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Adhesions How did it all get so bad

Updated on March 2, 2011

Adhesions

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Abdominal Adhesions! Hello and Welcome

I suffer with abdominal adhesions after surgery, this has left me in constant pain, its very hard as people do not understand the condition and when they look at you they think she looks fine. But Adhesions is a complex condition that happens after trauma surgery and can affect any part of the body or anyone but is more common in the abdomen/pelvis region.  

Trauma surgery on women can include, hysterectomy, appendicitus, bladder operations and cervical surgery, these are not the only cause but it is found to be more common in women who have had this surgery.

When I had my first surgery I was 16! and 7 operations later now at 44 I can longer have any surgery and I am left with Severe Chronic Pelvic Adhesions, Complex Bladder Dysfunction, IBD and Chronic pain. Basically alot of problems and symptoms...

I am sure there are many of you out there that are also fellow sufferers and find that there is not a lot of support or help for this condition with normally the doctor if he diagnoses you with adhesions only option is high opiods, with no other resolution.  Sometimes in rare cases or cases that have not exceeded the limit for surgery, you will be offered corrective surgery called a  adhesion dysectomy which will involve another operation to try to separate the adhesions and use a film to stop them sticking together. Surgery should only be taken with caution as the more surgery the chances of the organs sticking together increases with each operation. So it is a vicious rollercoaster that's in a loop the loop!

Adhesions are painful, very painful and can affect any organ in the body, the chronic pain that people feel can vary, but often making people not only trapped in their own body of pain but often isolating them from their friends and loved ones. Work is near impossible and it all seems very over whelming, often bosses not understanding the amount of time you are absent and the pain killers offer relief from pain but make you very drowsy and very often muddled and confused. which also lays a big impact on your employment.

After first being diagnosed with Adhesions, after visiting many doctors and hospitals, informing them that I was suffering, being ignored for 3 years and then yes finally, a visit to a private doctor who specialized in adhesions, I had an answer something I could call this horrible thing that had happened to my body.  Yes it helped but that was just the beginning as my 3 year struggle with Adhesions has only got worse, the pain is worse, the symptoms are worse.

I had to give up work and now have a carer, I am unable to go out unless accompanied and find that life is totally different with my adhesions. My blog is going to be my outlet for feelings and anything else that pops into my head...

Anyone who has adhesions will be able to relate to my blog and I hope I can offer slight relief, information, stories and maybe a few jokes!!!  Also I would like to let sufferers know they are not alone and there are others who are suffering like you, you never know maybe someone will get something from it.....


Do you suffer?

Do you suffer with Adhesions, do you suspect you have adhesions?

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    • Tina Vesper1 profile image

      Tina Vesper1 16 months ago

      Hello everyone. My partner and I work successfully with abdominal adhesions as a duo: Tandem Therapeutic Bodywork. Our website/upcoming blog etc are a work in progress. If you would like to know more, email me at

      tinavesper@OralTraditionsHealingArts.com

      Also, we both have personal experience with abdominal adhesions, for which there are many causes. We offer non-surgical, non-medication solutions.

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      Dibbs 2 years ago

      I think hydro would be really helpful as it can be incredibly soothing and relaxing, as well as a good form of exercise without putting pressure on the body...I would still advocate massage - but it sounds like you may have developed fibromyalgia as a consequence of chronic inflammation throughout the body...Are you taking anti-inflammatory supplements? They're not a quick fix but I found after about 6 weeks, my levels were massively reduced...You would need to check with your doctor about enzymes like serrapeptase and nattokinase (I take the strongest available, in capsule form) but I also take magnesium and turmeric capsules (the turmeric needs to be alongside black pepper / piperine because this increases its bio-availability by 125%). If your reaction is to scoff / pooh-pooh natural remedies, I completely understand - I was like you - but having tried pharmaceutical meds to no effect, I was desperate - and these DO WORK! Also, for fibro. symptoms, have a look at something called D-Ribose (online). A few of my friends are having great results with it. All of these things might, in time, help you feel more able to tolerate adhesion-focused massage.

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      Donna 2 years ago

      Thank you so very much Dibbs I will certainly talk to my g.p and my pain team im not sure about the massage cause anything touching my abdomen or pelvic area is so unbelievably painful even wearing clothes hurts , my doctors want me to have hydro therapy but where my body has swollen and I have put weight on I'm very self conscious have you tried hydro do you know if it's helpful? Sorry about all the questions I just want it all to end. Thanks again Dibbs it really means a lot to know that there are others who understand.

      Love and happy healing thoughts to you all xxx

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      Dibbs 2 years ago

      Hi Donna - if you scroll up a few posts, I have described some of the things that are helping me (alternatives to medication). However, from what I have learned on the Adhesion groups on FB, one drug that does seem to help sufferers is Targinact, which incorporates pain relief and laxative to stop the constipating effects of most opiates...Also, a lot of people are using things like Norytryptilline. You may want to ask your doctors about those, although I do think the alternative therapies / supplements are really helping me, although they're not a quick fix in the same way as pharmaceutical pain-killers.

      I really hope all of you lovelies feel better soon...I wish it all the time. Much love to you all. xxxx

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      Donna 2 years ago

      Hi all hope your all doing as well as you can be. I feel like I alwa winge and moan on here so sorry for that but Im in a living hell at the moment well I don't think I can call it living when all I do is sit in a chair or my bed all day every day the doctors have cut my morphine down so low but still haven't given me anything else or told me what they will try next I was wondering if any of you could let me know what you have tried over the years and what has been the best / worst thank you for reading and putting up with me. Love and healing hugs to you all xxx

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      Kathy scott 2 years ago

      Hello my dear friends, old and new, welcome Lor, l so sorry you are in pain, here we know all about pain, l send you a hand to hold, to give you strength, i will listen and be here for as long as you want. You are no longer alone. Love to my friends i hope life is being kind, i am thinking about you all. Hi Dibbs, my op is in october, perhaps if all is well, thank you. Lots of love kathy xxx

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      Dibbs 2 years ago

      Kathy - hope your nose op. is in the foreseeable future, and that your ticker continues to behave itself!

      Donna, Debbie, Lor - and anyone else reading - hope all of you are bearing up and in not too much pain today...

      Thinking of you all, and sending love. xxxx

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      Lor 2 years ago

      THANK YOU ALL FOR GETTING ME THRU ANOTHER 5 MISSERABLE PAINFUL DAYS. I ADMIRE ALL OF UR COURAGE AND NO LONGER FEEL SO ALONE. THANK YOU

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      Kathy scott 2 years ago

      Hello, its me, how is life? Being kind I hope.

      Im sharing, if thats ok, im going to hospital today for pre.assessment re. Broken nose. I will get date for op. Hopefully, now heart ok.

      How i wish i didn't have to go thru a 'procedure'., im very grateful for the care, i genuinely cannot breath, its scarey, but with many procedures under my belt! Can i do another one? My heart is pounding as i type.

      Love to you all, please let my friends find some peace, kathyxxx

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      Kathy scott 2 years ago

      Hello Donna, how are you today? Im going to try again..

      I thank you for you message, im sorry you are suffering side effects, i know how awful they are, this is the worst they have evrr beenfor me, my strongest meds are morphine, pregabalin,metformin, beta blockers for heart,all quite severe side effects. This is where my probs. are. I am going to ask the g.p. to reduce pregabalin,and as you advised, no increase in the others. I fear the pain though,What with everything we have going on with severe pain, the side effects are the last thing. What are we to do? my husbands asleep, i am staring at the wall, no more meds till 6 am.we really cant discuss medicine anymore, i end up crying, he walks away in despair. Enough of me, i reach out to you, its a song title sorry... but i do, with all the love strength healing i can find to take the pain from you. To see the relief on your face, worth a million dollars. Thank you for your help, i read Dibbs messages, a lovely lady, her energy, strength,courage are amazing, we have a young fighter to help us., Thank you Dibbs.

      My love to you Donna thank you, i send you my love kathyxxx

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      Kathy scott 2 years ago

      Hello Donna, i hope so much you are alright, i cant put 'well'

      Thank you for your message, i have been in such a bad place.

      Donna, im not going to try and write, its loosing text, and keep shutting down, i will try later on .lots of love kathy xxx

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      Donna 2 years ago

      Hi kathy you poor thing morphine is just horrendous yes it definitely can cause sweats I'm actually going thru them as I'm lowering my dose it causes so many side affects and they are not the same for everyone please be careful with upping your dose because the higher the dose gets morphine can make the pain worse ( I was not told this until it was to late) so you don't know if it's real pain or morphine pain. I just long for pain relief that just works I know Dibbs you kindly suggested abdominal massage but I can't have anything touch my abdomen even with a feather it's just horrendous. I'm being refused 10% evey 4 weeks from MST they have stopped my oral morphinne completely now I have still got a long way to go. I wish I could tell you something that is going to help you straight away but I'm so sorry there is nothing I know of don't ever be tempted to just stop the morphine cause you will be a lot worse. I'm here for you kathy I just wish I could actually help you. I hope this all makes sense sending you all my love and healing thoughts kathy and everyone . Xxx

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      Kathy scott 2 years ago

      Hello Dibbs, thank you so much for your kind message. I really got myself into a state, i do not like to talk to any of the family, especially my husband, who has had heart attacks, i so try not to worry him.i am going to the GP on wednesday, although my husband does not support my decision to go...

      Thank you so much Dibbs, for the information regarding the medication, i am terrified to lose the morphine, i cannot go back to the horrendous pain. I guess i just lost control over the last few days, but i will talk to the GP., on Wednesday. Lots of love Dibbs, such kindness, thank you. Hugs and healing my dear friend. Love kathyxx fingers Xx here goes press the button

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      Dibbs 2 years ago

      Kathy, love - the morphine is actually going to be making things WORSE with your adhesions - the intestines / digestive system / bowel HATE opiates - so morphine will actually compound your issues! I have spoken to those on FB with the same terrible pain as you, and they all seem to think that Targinact (which comes with a built-in anti-constipation medicine) is by far the best thing. A lot of them are also using kratom (a LEGAL , natural, pain-killer). Please look it up online. So long as you take it with a stool softener, again, apparently, the effects are marvellous.

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      Kathy scott 2 years ago

      Hello dibbs, l should have messaged you sooner, im really struggling at the moment. As you see ive ask donna about morphine, but i dare not change my pain relief the only help is from morphine....i dont know what to do, but it could be hormonal...i just dont know. Sorry just so mixed up. Take care lots of love kathyxxx

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      Kathy scott 2 years ago

      Donna its me, can you help me? Iam going thru awful side effects,morphine, newhigher dose gabapentine..and heart tabs, so many tabs. Ive been told my horrendous night sweats, changing my clothes etc., could be morphine, how are you being reduced...am l awful asking you? Iknow you are suffering, lm being selfish, ive just rang the drug dependancey people, im thrashing about, donna, wbat can l do, bless youfor reading this lv kathyxxxx

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      Dibbs 2 years ago

      Kathy - your suffering makes me shed tears - truly...You're so brave, and so NICE throughout it all. What a lovely lady you are - you're ALL lovely, in fact...I wish I had a magic wand to help you all, but I will do my best to make our voices heard.

      Bless your heart. Love and hugs. xxxx

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      Kathy scott 2 years ago

      Hello Dibbs , just read your message, you are striving for us all and finding help with massaging and physio, im so pleased for you and us.i am struggling at the moment. The Drs. Surgery were so kind to me today, l went for an appointment re: asthma clinic., saw l was poorly and ended up having an E.C.G. and being cared for...i am so very grateful, oh and a hug, from my friend at the doctors.

      It would be good to have more research into adhesions, l was infront of the 'old guard' doctors, who did not believe in adhesions., my journey began in my 30's Im 61 now, and still the pain takes me to unbelievable pain level. When l reach the 'rocking' level like today l am struggling...l have managed to sleep, things have calmed down slowly. I know it all ends up with money....if the drug company have no money.....

      Take care Dibbs, l hope you are having a little peace, thank you for all you are doing, and your gentle hugs, thats lovely. Love kathyxx fingers always xxxx

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      Dibbs 2 years ago

      I just wanted to say that I am still following the progress of all of you, and wishing you all well...I had a 2 hour Skype discussion with Dr David Wiseman (who set up the International Adhesions Society) just this week. He is a doctor of pharmaceutical medicine, and his specialism is adhesions, research and development...We were lamenting the fact that medics fail to appreciate the awfulness of these bloomin' things, and the various reasons why so little research is being done into barriers, etc. There ARE promising ones out there - but the problem is that they are being developed by relatively small companies who don't have the funds to conduct big clinical trials...Nevertheless, we got to talking about other mechanisms / therapies which might help reduce pain. He confirmed that pelvic / abdominal massage and physio can be HUGELY beneficial. Truly, they're helping me! Anyway - enough of that - all I really wanted to say is that I'm sending you all gentle hugs. xxxx

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      Kathy scott 2 years ago

      All the times i have sent messages they have disappeared! I have been upset! This time i wish my previous message had disappeared, all i wanted to say was, i am sitting here crying and feeling miserable with pain...instead i said, isnt it difficult! What a fool,me! I am sorry debbie you have been poorly, i hope you will have some help, next week.we will all get strong again, lots of love to my new friends and not so new friends!! I better not say old!! Love kath xx fi gers xx press button

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      Kathy scott 2 years ago

      Hello debbie, good to see you, sorry you have been poorly, been thinking of you, missing you all my dear friends... l wish we could really say how we are, isnt it difficult, we put on our brave faces, and that gets harder every time. lm due to see the Gp., next week, l dont know where to start to tell her how l feel and whats happening. I am at the hospital end of the month, to be re.assessed for my nose op, again, then consultant for pacemaker....sorry to ramble on. Im ok., i think of you and look on line every day, but its been difficult lately, as it is for us all, im sending you all hugs, lots of love, thank you for your kind words debbie, i do keep them close, bye for now love kathyxxxx

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      debbie 2 years ago

      Hi Kathy, Donna, Stephen, Dibbs and everyone !!

      Hi all sorry that I have not been here to help and support you all, feels that I have let you down but been really unwell, computer problems as well. Have really missed all my friends but have constantly thought of you all! Well have to see neurosurgeon to try to help next week. My white blood cell count has bottomed and adhesions are giving me hell. Kathy I still have my sense of humour though! Well sending lots of love and hugs to you all and Kathy remember your heart was made by angels love! take care everyone :) xxxx

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      Donna 2 years ago

      Hi Kathy shoes for me to oh and clothes for my daughter I love shopping for her and maybe a glass of champagne forget all the awful medication thank you Kathy you always manage to make me smile you could never be unkind. I have missed talking to you but as you know things can get to much and the pain takes over.

      Sending you love and healing thoughts xxx

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      Kathy scott 2 years ago

      Donna, i hope you didn't think i was being unkind, i know how awful you are feeling, the darkest place, no one to help, they care,only they don't know what to do to help. I have missed talking to you, me too with pain soaring, like now, but you are strong lady, you will square your shoulders to this cruel illness. I send you my love strength an d healing thoughts.take care kathyxxxx xxxfingersxxxxx

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      Kathy scott 2 years ago

      Hello Donna, my heart goes out to you...if only i could help you, my very dear friend. How you cope with reduced morphine, i dont know... lets think, we are going shopping, i will buy shoes, what would you buy? Lets stop and have a tea with lots of cream, blast to the diabetes ha ha, lets laugh, and giggle like kids, for a while we are good....i will wave you goodbye and drive off until next time...my friend i send you love and healingxxxx fingers x please fly to donna. Love kathxxx

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      Donna 2 years ago

      Hi, Kathy I'm so sorry it's been so long things have not been great I am so low right now and can't seem to get out of it this time the doctors changed my anti depressants but things got worse I'm still slowly coming off the morphine that's getting harder they still haven't been given any other pain relief I'm just so tired of it all and I have only been suffering for 3years so after doing this and with so many more problems for 30 years there is no way you can call yourself wimpy you are strong and very kind lots of love and healing thoughts. X

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      Dibbs 2 years ago

      IN NO WAY are you a wimp, Kathy - you are a WARRIOR - an admirable woman who has fought one HELL of a battle for over 3o years - NOBODY could do more...!!! I wish I could give you a hug and tell you it's going to be OK! Please just know you're not alone in this fight. Lots and lots of love.

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      Kathy scott 2 years ago

      Hellp Dibbs, how are you? This always seems such a silly question, but ment with much love! Im having bad days at moment cannot cry, cos then i camt breath, see broken nose! My Gp has arranged for E.N. T to put me back on list to help with breathing.

      Anesthiest refused to do op. On my nose due to heart, but with pacemaker perhaps can now help me. Dibbs thamk you for all the informatiom I will re.read it, but it looks really good advice. Your energy burst out, which is great, im sorry but I am really weary and beaten down, doesn,t that sound totally whimpy! But i am with you, i have battled for 30 years, that dreaded word adhesions. Bless you. Take care. Lots of love to you and all my dear friends kathyxx fingers x i will press go.

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      Dibbs 2 years ago

      Hi Kathy - I'm here - lots of love to you and the rest of the group! I really think - if you're brave enough - that the FB group of which I am a member would be great for you all - as there is ALWAYS someone online with the condition to advise / support / give cyber-hugs! There are now over 1000 members, although obviously they don't all post, lol! It's such a friendly community - and we're all going through the same hell. However, it's been invaluable to me, not only for the words of encouragement but various tips that people have posted, of which I've taken advantage and then passed on. I am posting a link to the group here:

      https://www.facebook.com/groups/414454158602482/?f...

      We now have a highly respected medical researcher on board who has spent the last 28 years examining pelvic pain/ adhesions - he is the guy who set up International Adhesions Society, a resource that lots of sufferers have used.

      If you don't feel able to use FB, I did promise to list helpful supplements / therapies that are working for me / others, so here goes:

      * serrapeptase

      * nattokinase

      Both of these should be taken in capsule form; they're available from health shops; they're enzymes that work by 'dissolving' / eating away at the fibrin that makes up adhesions. You need to give them 6 weeks to feel any benefits;

      *thiosinaminum

      This is derived from mustard seeds and is a homeopathic medicine that again works on reducing the effects of adhesions. You can take it in capsule form, or use it externally as a cream on the affected areas. You can make a paste yourself by crushing mustard seeds and mixing with a little water.

      * anti-inflammatories, to reduce the conditions that adhesions love - I advise magnesium, turmeric, and black pepper (piperine). The black pepper increases the bio-availability of the turmeric so it's important to take the two together;

      * pro-biotics and aloe vera - both of these improve bowel health, something which is vital to those of us suffering bowel problems as a result of the strictures caused by adhesions;

      * specialist pelvic physiotherapy - this involves intensive massage, and mobilisation / manipulation of the organs affected by the adhesions. Alongside the enzymes I mentioned above, this is really proving to 'break' lesser adhesions, and stretch thicker / larger ones. The physio may also offer internal work where they can ease pain trigger points;

      * intensive abdominal / pelvic massage - this is also known as fascial release, where deep, focused massage of the affected areas can smooth out the knotted fascia beneath the skin and, again, break up the adhesions;

      * stretching / rolling over an exercise ball - this should be done on and off throughout the day and is vital to prevent us being 'scrunched up' by adhesions sticking our innards together...Also, if done regularly, with a clockwork motion, you can stimulate your bowels and compensate for the constipatory effects of the adhesions.

      * personal, hand-held ultra-sound device - used on the 1mhz setting, the pulses given off by these devices can penetrate about 4 inches below the skin. They can ease pain and help to break down adhesions (physiotherapists use them for all sorts of injuries / traumas / stresses). You should use it in 10 minute bursts, keeping it moving in circular motions over the affected areas.

      Please do give the above a go, folks - so far, 8 months out from surgery, I'm nowhere near perfect, but I am still (touch wood) not having to take pain-killers (with all of the horrible side-effects they can have).

      I really hope to see you in the FB group! Much love to you all, my dear friends. xxxx

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      Kathy scott 2 years ago

      Hello my dear friends, how are you? As you haven't put any messages on i can only guess. This is the second time i have written, i hope this 'goes'. I wanted to say 'thank you' for being here for me, i was so in a dark place, when i found you. I miss you, lots of love hugs and healing thoughts, kathy xxx

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      Kathy scott 2 years ago

      I miss you, my very dear friends, who i found when i was in the dark and so lonely...

      There you were..thank you. Lots of love hugs, healing thoughts. Your friend always kathy xxx

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      Kathy scott 2 years ago

      Hello susan, sorry to see you are having nusea from your adhesions. I take meds for sickness called DOMPERIDON 10mg, i take two tabs whenever needed. Dr tend to advise me each time they prescribe to not take these tabs to regular, hut i am careful with them, but they do work, instantly and fast. Mention this to this pharmacist and or you GP. Best wishes. Love kathyx

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      Susan 2 years ago

      Hi Everyone. I have constant nausea due to adhesions around my liver. Is anyone in the same boat? I am on Zophran, but that does not work some days. Can anyone help me? Advice?

      Thank you!!

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      Dibbs 2 years ago

      I think we all feel very sorry for ourselves - rightly so - when the nature of this illness means it goes unrecognised by so many, including the medical profession...How many times have we heard, "adhesions don't cause pain / they're not life-threatening" when, in fact, they do both.

      Like you, I also feel angry, and I grieve for my past life...I still have hope that one day surgeons will be forced to appreciate their role in making us so poorly, and that medicine will seek to find a way to make us better. I have made it my mission to tell as many people 'in power' as possible by writing letters to all who may be even remotely connected to the health services. Next week I have a meeting (via skype) with the CEO of Endometriosis UK to tackle a range of issues with her. I also set up a group for women in Wales suffering at the hands of these disorders, and my health board has made me a 'stakeholder' so I will be consulted on various related topics...I won't stop until have made a difference somehow!

      I also haven't forgotten about detailing some of the things / supplements I am taking which enable me to keep functioning with minimal pharmaceutical meds (so far, touch wood). I will get to it! In the meantime, I am sending you all loads of love, hugs, hopes, and well wishes. xxxx

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      Kathy scott 2 years ago

      Hi its me, thank you Donna for sending me your kind wishes, i will keep them close, i have felt so bewildered, 61 and a scared rabbit! All the surgeries ive had, this shoukd have been no worries, but i felt alone. My family have been wonderful, i am very blessed and love them dearly, they are my life.

      im so sorry you are still in need of help, and so much pain, i am holding your hand, we will cry together, ive done a lot of that lately.your surgeon was female, mine male, that ruined my life.i understand, i too miss my passed life, i understand, you are not a spoiled brat, you are a lovely caring person, why you? I feel sorry for myself as well, what a pair we are. My very dear friend, i send you my love healing thoughts. Take care kathyx always here if you want me. Please let this go.

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      Donna 2 years ago

      Oh kathy I'm so sorry to hear your news please don't ever apologies you don't winge. I hope to god that now you have a pacemaker the pains will stop and at least one thing will be better for you. I really wish I could help you somehow all I can do is send my love and friendship.

      I have not been to good lately they are still lowering my morphine but still haven't given me anything else for the pain all I seem to do at the moment is cry I cry for the pain and I cry for my old life witch I miss so much I keep thinking how because of that one surgoen my whole life has changed I can't do anything and that surgoen is just getting on with her life it's just not fair sorry I know I sound like a spoiled brat. Hi Debbie hope you are doing ok and Stephen have not heard from you in ages hope your doing alright.. Hello again Dibbs and welcome Jackie .xxx

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      Kathy scott 2 years ago

      Hi its kath, hope my dear friends are as well as can be, hello jackie, i dont think we have met yet? Bit all over place at mo. Ive been in hospital since i last wrote, passed out last wednesday, ended up at local hospital then the big heart hospital in cambridge suffolk. I have had pains in my chest going on since 2011, and been on meds. Apparently, my heart has been firing off then slowing down too much, now know why broke nose, and passed out. This may not send? but im home today, and have pacemaker. More pain, sorry to winge. Lots of love i have missed you all so much kathyx

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      Dibbs 2 years ago

      Finally had a BM, lol! So the partial has passed for now...The colorectal surgeon I am seeing wants to fillet me like a fish and do a huge vertical cut to chop out the defective portion of bowel - uhhhh, no - that will create more adhesions around my SMALL bowel - and there ain't no way that can all be cut out! So I am getting all of my records together and going to try to see a specialist at St Marks in London, the big bowel hospital (I will have to fight because I am in Wales and we aren't allowed to see doctors in England) but I reckon if the redundant portion could just be stitched into the correct place instead of it being flopped and stuck into my uterine cavity (following a hyst. 7 months ago) I could go normally-ish again and wouldn't have these awful obstructions...Since my op. I have lost so much weight - 40 pounds now - because I can only eat a tiny amount of low residue foods each day or I block up.

      Anyway, since my obstruction has passed, I am back to a dull ache / pressure again rather than pain - so I plan on trying pilates tonight. My physio recommended it!

      I am so sorry to Jackie - I have no experience of pain pumps...Thus far I am managing without regular pain relief. I take various enzymes and supplements that have a cumulative pain-relieving effect instead. They're not immediate but, after time, they really help.

      So nice to meet you all!

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      debbie 2 years ago

      Hi friends, sorry that I have been away for so long but it was really bad infection and as you know infections cause adhesions! Oh hell! Anyway back here again (is that good or bad?) and on the better side of it now crossed fingers. Hi Donna great to see you again had me worried for a while there! Hi Kathy how are you, bet you looked great in your outfit! Hello Dibbs welcome as you have read I am totally mad but I blame it on the pain killers. Well friends just wanted to say hi and that hoping you are all well and here for you all again Stephen hoping you are also getting there love and hugs to you all Debs xxxx

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      Kathy scott 2 years ago

      Hello dibbs, i read with horror, i couldn't take that treatment. I have DOCUSATE 100MG CAPSULES 2 x morn and 2 nite., as i take morphine this can make you constipated, and as with other prob with my bowel ihave to have gentle 'help'., Dibbs your bowel condition needs addressing, i have bee turned away from doctors many times and a and e, but be strong when you can, and get help. My meds,help, me, give these tabs a try. Take care. Love kathyx

      Hi only me, love to my dear friends, a bit difficult at moment..love kathy xx

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      jackiemcharland@gmail.com 2 years ago

      I didn't quite finish what I wanted to say,

      I'm really scared of the medication pump they say 1 out of 397 units is is defective, that's a lot of defects.

      I also feel like what if it causes more damage more problems.

      It also has to be replaced every 5 to 7 years and there's a catheter that runs into your spine .

      Has anyone had this medication pump? does anybody know anybody who had this medication pump ? Please please if you have any advice or information please email me. Jackiemcharland@gmail.com

      Also if anyone knows of any support groups for chronic pain in the Las Vegas Nevada region please let me know.

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      jackiemcharland@gmail.com 2 years ago

      Hi I am reading all of this and saying oh yeah that's my day, I'm 33 years old and all of this started when I was 21 I have chronic pelvic pain daily and I have had five laparoscopies a full hysterectomy my gallbladder out and my appendix out. I have been on narcotic pain medicine for 12 years and now they want to stick me on the thoracic spinal medication pump.

      If anyone has any information or is tried that the medication pumps please send me an email at jackiemcharland@gmail.com.

      I have been fighting with t

      pain doctors because they refused to raise my dosage and they want you to be on the nonnarcotic medications, which don't work as well and then they try to psychiatric medications which make me crazy because they say I'm depressed. Of course I am depressed .

      it's been a real fight because yeah they do say it's in your head or you're making this up or this is just how it is you got to learn to live with it for through it all that stuff I'm tired so very tired 12 years of pain and I've been to over 30 doctors and eight different states into countries like I don't know what else to do

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      Dibbs 2 years ago

      Thank you, Donna - and hi! In a considerable amount of pain/ discomfort this evening - 5 days into a partial bowel obstruction (due to the adhesions). I have stopped bothering going into A&E now - they x-ray me and say it all looks "fine" - just lots of constipation and dilated portions throughout the bowel. I've given up trying to explain that that is a sure sign of adhesions narrowing / constricting things. It's pointless. They just look at me like I'm mad. I'll spend hours and hours there, just to be given a laxative and sent on my way...I also had my second session of pelvic physiotherapy today where she pummeled my belly and did biofeedback (an electrode thing inserted in one's lady parts) and then hooked up to the computer so you can see how your pelvic floor muscles are working (or not). Mine are incredibly tight from pain. The whole appointment hurt - but I do feel like it helped - although still no 'movement' on the loo. When I've had a bit more of a rest, I'll write up all the things I am doing / taking / trying - in the hope that they might help you all somehow. xxxx

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      Donna 2 years ago

      Welcome Dibbs we are a very close group who always take care and try to help one another. As you have probably read we share our stories and anything that might help someone so please go ahead and let us know your story and anything you have tried.

      Hi kathy,Debbie and Stephen how are you all at the moment hope your all as good as you can be all my love Donna xxx

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      Dibbs 2 years ago

      Thank you so much for welcoming me to the throng, Kathy! This site seems a good place for sharing personal stuff - I tend to use the FB group to ask for advice / research on the topic of adhesions. As I say, I have learned a LOT - and am doing various things / taking various supplements to help me. I get incredibly angry about this condition, not least the lack of recognition / compassion from medics...As a consequence, I have become a bit of a political animal, attending meetings with / writing to the health boards - and in a fortnight I have a meeting with the CEO of the UK's endometriosis charity (the disease which started my adhesion journey). I am more than willing to share my discoveries if you think they may be of use to any of you - but, in the meantime, thank you again for opening your hearts and lives on here...Bless you all. :-) xxxx

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      Kathy scott 2 years ago

      Hello Dibbs, welcome to our little 'band of brothers', perhaps band is not a good word! I am very new to this wonderful board,this i stumbled upon and i am so very grateful, i have very dear friends, who i care about very much, stephen, bless you, invited me to share my life story, my life with adhesions, i am no longer alone. Debbie and Donna, come to my side when i call, a d have never let me down, thank you for your advice with regards to Facebook, i am not on Facebook but will ask my daughters to help me. We, if my friends dont mind me saying,have all been struggling as you have noticed, no messages, but as soon as we feel stronger will be our old selfs again. Yes, you will loose you messages, it happens, and upsets me very much when ithappens, fingers x, this is shown. Take care, with kind regards, much love, kathyx

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      Dibbs 2 years ago

      I hope my last post shows up - it appears to have vanished! I was just introducing myself and thanking you all for sharing your beautiful, moving, emotional accounts...Fingers crossed you are are all still using this site!

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      Dibbs 2 years ago

      Hello, lovely people! Are you still using this site to post about your adhesions? I have them too - and I just read all of the above and wept all the way through...I feel like I know you all, and your stories were so moving...I am a Debbie too - so I am using a shortened version of my nickname instead...If I may be so bold, may I recommend a Facebook group which is also wonderfully supportive and informative? It is called Adhesions Pain and Suffering and there are almost 1000 members on it now - which just goes to show how common these wretched adhesions are!

      I am very fortunate (right now, touch wood) not to be as bad as you, or some sufferers on the FB group - but my life has changed irrevocably and I do cry - a lot. I am divorced, with a ten year old son - we share custody of him, and my Mum helps me a lot...I get very lonely still - and sad that I can't be the parent I would like to be...I do have a fella but he is back in the USA right now as both his parents passed away at the end of last year and he has to sort all the legalities etc - we have been apart for almost a year now and I miss him - but, hopefully, he will be back soon!

      I am taking / doing various things which I am finding helpful in keeping the pain, torment, and restrictions that come with adhesions as manageable as possible - and am more than willing to share, if you would be interested? Certainly, the things I am doing are keeping me off traditional pain meds (for now, lol) although bowel obstructions are always lurking just around the corner - very frightening.

      I will also tell you a little bit about my adhesion story, if you would like? I thought I'd check and see if there is anyone out there first, as the last post on here was a week ago and I didn't want to just be chunnering away to myself like a mad thing, hehehehe!

      Much love - and thank you so much for sharing your lives on here.

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      Donna 2 years ago

      Thank you Kathy you always know what to say to make me feel better. Xxx

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      Kathy scott 2 years ago

      Hello donna, thank you for your message,

      yesterday went well, we had a lovely day, only 20 or so people, cant believe its all over. I am exhausted never mind. Donna, my heart goes out to you,my youngest daughter, who married yesterday, felt that i was her responsibility,her school work took a step back and her friends, she felt she was left with me, her two other sisters, had left to live their own lives, so she stayed with me, she had grown up with the 'ill mummy' and bless her at an early age would run in from school and run straight up to the bedroom, she knew where i was, laying down. Talk toyour lovely daughter, many are not as lucky to have such caring family, tell her she has to go to school, and be with her friends, i know its hard donna, really i do, we never asked for this, this illness and all that comes with, but tell her you are so proud of her,of all she does, but then im sure you do, but its ok for her to do all the things she has to do, then you can cry after, like we do.i send you my love, and a hand to hold, please let this be shown to you.love kathy xx

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      Donna 2 years ago

      Hi kathy, Debbie and Stephen it has been a while since I have been on here but things have been all over the place pain is awful and been having a few problems with my teenage daughter she is a wonderful girl but all this has hit her quite bad I have trouble getting Her to school I think she is scared to leave me the summer holidays are coming up and I want her out with friends not stuck in with me. Kathy I hope your daughters wedding went well and you got through it ok.

      Sending you all my live xxx

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      Kathyscott 2 years ago

      Hello its me, how are you, re.read my last letter, sorry, i ment ' not hearing ftom you' you are poorly, love healing many hugs, lots of love kathy xx i miss talking to you my very dear friends, take care, stephen,debbie,donna, xx kat xx

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      Kathy scott 2 years ago

      Hello, my dear friends, been thinking of you, i hope that doesn't mean the worst of pain. Isn't this weather awful, layi g with hot water bottles on you doesn't help. I have my daughters wedding on saturday, that has come round so quickly. Can i share, saw gp last week, he is surprised that things have deteriorated quite a lot, another ecg tomorrow, i dont understand, one minute straight to a and e., then.....oh well. With everything else, not good at mintue, trying to be strong for saturday. Im going to bed, lots of love, healing,and many many hugs. Nite nite kathy xx

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      debbie 2 years ago

      Hi Kathy sorry not got back until now but you know how I am at the moment but I am always thinking of you and will be with you in the love I send while you see all the specialists dear friend I am there holding your hand and my arm around you hugging you. We may all get hard over medical matters Kathy but its love, friendship, hugs and kind words though that get us through the problems, its the support that makes us able to have the strength to fight or just to cope with the pain for example we go through 24/7. Also as everyone who knows me says I am totally gooey inside! So dearest friend let that angel made heart accept all the love your friends here send and let it keep stretching to take it. all my love and hugs your friend Debs x

      Hi Donna and Stephen sending love and hugs hoping the pain eases and that you can have a gap to draw breath all my love Debs x

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      Kathy scott 2 years ago

      Morning, i have just woken up, goodness its been a long night. Love, healing and blessings to you, my very brave friends, you make me humble, i am so grateful you are there for me, thank you so much. Love kathy xxx

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      Kathy scott 2 years ago

      Hello debbie, just wrote to you,its gone,im so upset..bless you for your kind words. I m so upset. Nite nite love kathy xx

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      Kathy scott 2 years ago

      Debbie, you are so very kind,when i read your lovely words, i get used to being tough, strong,everything is ok, im not waving any flags, but i have got hard, where health is., i guess we all have. Thank you for reminding me its ok to hve a kind word said and hold it. Im in bed just shattered and all that goes with it. The dr said another heart trace next week, and see consultant. He took my pulse, and said 'thats not right" looking back on my 2011heart records he said things have changed somewhat.the fall, my nose, and my constant loss of balance is due to heart, not or as well meds. I couldn't have a lovlier thought as being wrapped by angels wings. Thank you my dear friend. Lots of love and healing your friend.kathy xx nite nite.love and much healing donna and stephen, together we are stronger. Xx

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      debbie 2 years ago

      Hi Kathy, I am thinking of you Kathy meeting the specialists about your heart but you tell them from me, any pains or problems it is only because your heart is stretching to hold all the extra love in it, as it is a heart built by angels! all my love, big hug, god bless dear friend Debbie xx

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      Kathy scott 2 years ago

      Hello debbie, i must have fell asleep, well, passed out more like, after i wrote to Stephen. How do you write pain, i dont know the twilight films but i will watch them, my hubby loves these films he will know instantly. I come to a point, i cant cry anymore, but tears fall, the pain is screaming at me, but i step away from it, i leave my body, and wait for the clock to tick bye, i usually have a temperature, i have rang samaritans, stood by the meds cupboard, and looked to sellf harm, took too many tabs at the wrong time, but still the pain is still there, throbbing away, the last time i was at the knife draw and my daughter walked in chatting away..she never guess, thank goodness, theres many things debbie, but in the cold lite of day it sounds silly and stupid, but its sad, very sad.

      I am so very sorry the pain you are in, i would share with you, just to give you a little peace, we are all in a very dark place, together,but we will get strong again, i know we will, love to you all my very very dear friends. Love kathyx

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      debbie 2 years ago

      Hi friends hell we are all in a bad way at the moment just shows though what we all have to cope with without help, I do not know what to do with myself due to amount of pain I am in at the moment my brain has got to the stage it cannot cope with pain messages I think. I actually hit my head on floor a couple of times last night to take pain elsewhere did not work just headache and bruise. How are we to cope? Sorry for moaning but I know how hard I am finding it to cope, black corner back, so I can understand your pain and what you are going through and so my feelings for all my friends here is true and so much love is sent to you all, it is truly a blessing to have you and know that at least I have you that understands as how can you put this pain into words to describe it, there are no words. Stephen, Kathy, Donna all my love big hugs from me to you always god bless deb xx Really fed up though with losing what I write like you Kathy!!

      I have found a way to describe to others what I am like I tell them to watch a part of a film it is the Twilight films the breaking dawn part 1 where she is injected with venom she is perfectly still due to morphine but the film shows flashes of her screaming, pulling hair out etc but no one can see that it is showing what she is feeling on the inside well that is us I am bella swan at that stage not screaming on the outside but screaming on the inside all the time. Dxx

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      Kathy scott 2 years ago

      Stephen, im so sorry you must be feeling so poorly, how i wish i could say the right words to help, I am sending you so much healing,and much love to get stronger. Please pain, let go...my love to you and your lovely wife. Kathyxx

    • Stephen D Cox profile image

      Stephen D Cox 2 years ago

      Hi folks,

      So sorry for nor not be in touch. Simply too much pain right now. Take care, bless you you all.

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      Kathy scott 2 years ago

      Hello debbie, me again, i fine really, but my pain is throbbing, isnt this just ...well no words to describe, sorry just had to tell. This page keeps twisting round, its so weird, i put little pussy cat and dog faces on at the end of my letters, but they never appear? Im going to try and sleep, you too, take care love kathyxx

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      Kathy scott 2 years ago

      Hello debbie, im sorry, you must be in so much pain,the anti biotics not helping with this infection? Not to bleet on about myself, but it took, three lots of different meds, to knock out my bladder/kidney infection, as you know the body gets used to all these tabs, so the gp has to up the strength, i had my real bad bout all over christmas, i think i smiled not stop, raging temp,no wonder im loopy!

      I know that this was nothing compared to how you are feeling,please dont worry im fine, you get well, stronger, im listening to the birds singing, three hot water bottles, guess where placed!! sending you much love and smiles, your loopy friend kathyxx

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      debbie 2 years ago

      hi kathy up due to usual how are you? I truly understand as you know how it does your head in at the thought of coping with another serious disease. My dad and all his side of the family have heart problems, hereditary so I have worries, sorry not been here for you but infection got so bad. will try to be here more for you dear friend but still suffering at the moment badly xxx Debbie sending a big hug, healing and to just say always thinking of you xxx

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      Kathy scott 2 years ago

      debbie, so sorry, you arefeeling so poorly, you take care, take meds, and rest, with every mile from suffolk to you, love, healing,hugs,and quietly holding hands to give you strength, my thoughts are with you dear friend. Love kathyxx

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      deb 2 years ago

      Hi Kathy really ill at the moment but I just wanted to say that I am thinking of you and sending all my love and a huge hug Hi Donna thinking of you, take care hope all goes well with GP Stephen are you ok? sorry it is short but taking too much effort and energy I have not got.D xx

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      Kathy scott 2 years ago

      Morning, my friends, or night owls, listening to birds singing, gastritus woke me, i hope a better day is today for all, sorry a bit low today, got upset and angry with life, hey ho, chest pains, honestly, i have been having this pain for sometime, just put it down to meds, oh dear. Seeing gp this week, donna, hope your meeting is soon with gp. And pain team. Nite nite, lots of love kathyx

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      Donna 2 years ago

      Morning kathy it really is so good to have found friends that truly understand how your feeling I'm so thankful to have found you. I have asked for a meeting with my pain team and my G.P so I can get some answers as I'm loosing my mind and any strength I had left. I have all my fingers crossed for you i hope you get some peace from all your worries. Lots of healing thoughts and friendship. Xxx

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      Kathy scott. 2 years ago

      Hello donna me again, sigh some of my text is missing? How are you this morning, didyou manage to have any sleep. Take care donna, i hope you can get some answers, and some pain relief. Lots of love kathy x

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      Kathy scott 2 years ago

      Hello Donna, so good to hear from you, thank you for caring, putting on a smiley face as we do, but inside like a jelly!, a bit unhappy about it all, and i guess, feel a bit sorry for myself. Im sorry that you are in turmoil, i can feel all your pain and questions you want to ask the doctors. How do they send a patient away, with, well we will reduce your morphine, they have not told you the replacement? But what do you do at the meantime? All you can see is this one bottle of morphine to last you, i would feel exactly the same, scared, you are so brave, i admire you greatly, i do know how you feel, and i promise i do. This illness is a monster. Can you call your pain tem and ask them for advice? I know that doesn,t help the pain right now, but perhaps that will answer some questions. I so wish i could take this pain away, i am sending you so many healing wishes..love and many hugs. Thank you for caring, i have found friends in such a dark place, i am so lucky. I do hope this is shown, fingers x it doesn,t disappear love kathy

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      Donna 2 years ago

      Hi kathy, I can't stop thinking of you and how so unfair things are I'm so sorry you are having to go through even more. Adhesions are just so cruel not only do they give us so much pain they can stop us getting help for other things I really hope they can sort this for you I can't imagine what you are going through. I hope you can get some sleep and peace and for all this to be sorted quickly for you. The pain team has told me I'm only aloud one bottle of morphine a month I just don't know what to do with myself most of the time and once they get me off morphine I don't know what they are going to give me for the pain. Take care all my love and friendship. Xxx

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      Kathy scott 2 years ago

      Hello donna, how are you? , better days? I do wish peace for you donna, its kind ov you to write. Im sorry its taken a while to answer you but i have, having trouble getting my head round this heart thing. I am, well i like to think i am,pretty tough, but this news has dented me a bit. The gp rang today, i am seeing the doc. Next friday, this is suppised to be 'urgent', the doctor has got to refer me back to the cardiologist! The anesthetis wanted to do that on wednesday, but not allowed to do that. The main concerns is more adhesions, understandable i guess. Other docs. Have refused me any surgery due to adhesions, our old adversary! I have gone on about me, donna, but how are you really? I write, moan, chat, moan, again, that my letters arn,t shown, but in all gbat donna, i wish you peace, no pain, sleep, take care,my dear friend, kathy x☺

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      Donna 2 years ago

      Kathy Im so sorry I wish I could say something to make everything ok for you but sometimes life can be so unfair I can imagine your head has been all,over the place today I know it doesn't help you but I'm thinking of you and wishing all the best for you I hope you can get some rest tonight xxx

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      Kathy scott 2 years ago

      Me, debbie, i had to smile when you sent, just two lines you were upset and putting on a film, i do that, ihopefully just get passed who is in the film, then fall asleep.

      can i share? I went to hospital today for pre.assessment for op on my broken nose, as were going thru questions, swabs, then i had a ecg, i do take tablet for irregular heart beat. I heard the dr. Ask for the anesthetis, whe the anesthetis saw the ecg she said No, not doing op on nose i should go straightto cardiologist, but, can no longer do,due to the cha ges in legislation, the dr. Said she would ring my gp, get me to them quick, they refer me again, quick, their was talk of admitting me, i was knocked side ways, so here i am, waiting, we aretalking heart pacer? My mum bless her had heart trouble angina, then a triple heart op. And diabetes, so there is my diabetes, and now progressing heart probs. Told two daughters, but not my daughter who is gettibg married. I haveto say, the nurses doctors,anesthetis, were superb, i was looked after, and the ansethetis was lovely. Oh im tired, so tired, cant get head round today, oh they told me to go to a and e, if i need them. I really hope this is posted. Nite nite love kathyx

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      Kathy scott 2 years ago

      Hi its me, debbie, so sorry you are in a bad place, i always feel so helpless, but this illness is, isnt it, yes we take the drugs and are very grateful for them, but its still there that awful gnawing pain...i just wish for you, as the clock ticks, it will tick away the pain, and that you fall asleep...for some relief. As for any distractions, i pin, and watch our forum, and try and read i say try, cos i always fall asleep, a bit boring i suppose. Your quilting must look lovely, a labour of love. I will send this, be back love kathyx

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      debbie 2 years ago

      Hi friends, (well that is what we all are to each other isn't it?) how are you all, well whoopee had a massive 2 hrs sleep! Still knackered. Sorry about yesterday Kathy and you could never offend me love, and as far as angels I have them all around the house. The ark, well start building shall we. Pain is awful today painkillers not touching it, you know the feeling guys, brain fuzzy totally zonked on morphine but in agony that has you writhing and rolling with it. I just wanted to check you were all ok and hopefully take my mind somewhere else Hubby is worried as I have high temperature and prone to sepsis and worried it is not just bad infection/cyst flare up but something more hidden going wrong I just feel so unwell at the moment with it but will wait and see a bit longer as really hate the hospital and as you all know when you are in there you might drop off to sleep amid the noise and they wake you up to take your blood pressure and they say it is high well of course it is high firstly you have just been woke up and the pain raises your blood pressure and then they say that you really should get some sleep, honestly better at home as long as possible.

      Can I also ask how you all get through the days what do you do to keep yourselves occupied even though in pain and have you any hobbies. Myself, at the moment I am hand piecing a quilt all in batik fabrics as quilt to take to the beach for my son and girlfriend have made a total of about 3,500 hexagons and now joining them to look like flowers it looks very tropical, I have always made quilts, crocheted, knitted etc it helps get through the pain counting stitches. I'm waffling totally not with it. Well hopefully have a chat later, and Donna thank you for your very kind words but honestly I am here for all of you if you need me as I know I need you all, I think we need each other with what we are going through daily, that is why this site is a godsend. Stephen please let me know you are ok as I really worry about you and just hope that you are not over doing things. love and hugs to you all Debbie xx

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      Kathy scott 2 years ago

      Hi its me, another day, my dear friends to get thru. Debbie i hope you have some sleep, donna,thank you for your kind words, please beep me, whenever, im here, to listen, to waffle on......im good at waffle, ive always been called chatty kathy, even as a kid!, hello stephen hope your days are being kind to you.will send this and write again,as been to hospital today, just to tell you whats happened. Love kathy.xx

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      Donna 2 years ago

      Hi, I want to thank Debbie and kathy from the bottom of my heart for all your advice and friendship your both always here when I'm feeling lonely and in so much pain. So thank you both for all your kind words. XXX

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      Kathy scott 2 years ago

      Hello deb its me, im shaking so please excuse wording and writinim so sorry you are upset, please dont cry, i cried this afternoon, we had better build an ark! My hugs, handholding,love to you, my dear friend. Im battling with zonked out hubby scared i can tell by his face, our angels,i hope you are not offended, they hold us gently.lots of love kathy xx

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      deb 2 years ago

      I am going to take my meds and as crying now going to put a film on and see if it is boring enough to fall asleep so hopefully speak later to you all love dx

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      debbie 2 years ago

      Sorry but knackered because of being woke up, in pain, the sun is shining its such a beautiful warm day and cannot even get out of house to sit in garden, trapped! What a sh---y life its not fair is it to much to ask for someone to be here to help me sit in the garden in the sun instead of how I am living? Sorry just down as tired Debx

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      debbie 2 years ago

      Hi Stephen how have you been love or is that a stupid question? So missed you and the whole of your fan club missed you hopping all is well and your wife also give her my love. Oh and must not forget that hubby said to pass on his love and understanding to your wife. Hope to speak later and your thoughts to my idea take care friend, love knackered debs xx

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      Stephen D Cox 2 years ago

      Kathy, thank you so much.

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      Debbie 2 years ago

      Morning all, (Serious bit later to ask you guys Might interest you Stephen) how is everyone, just been woke up by double glazed salesman with finger glued to doorbell, thick man he was stood in front of double glazed door and passed a double glazed window. Really angry as first sleep in 3 days and had only had 3/4 hr and now been jolted stirred everything up!!No chance in hell of going back to sleep and not due meds now for 3hrs! I am waiting for a sticker from the council that you put on your door against cold callers it is the council and police working together have you guys heard about them - free! Friend has one has has since not had one salesman knock!

      This is something that I have been looking into due to my arthritis and hubby has it also and that I have noticed pain has been really bad when also arthritis is moaning so found this:-

      " How's your weather? We have and will continue to have, high humidity, heat, storms, and rain. That means the barometric pressure is falling....and my joints are terrible. Dr. James Fant (University Specialty Clinics) stated "if the barometric pressure is decreased, then that would allow the inflamed tissue to swell more, simply because there is less atmospheric pressure holding the tissue back. If there are nerves in that tissue, then those nerves would be stimulated by that swelling and that would translate into pain."

      Is there a connection? Our adhesions are connective tissue, so is this tissue which is always inflamed from being pulled acting the same to air pressure.I know that temperature plays a part and the seasons can I ask you guys if you think this is a stupid thought and would really like your opinions. Like I have said before it seems where they cannot do anything for us they have given up so I am trying to find something and answers why pain so bad at times etc when all I have done is the same sat on bed! love to you all and sending hugs debs xx

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      Kathy s cott 2 years ago

      Hi its me, just woke up cat patting face...thats a little of the night gone. I always read our previous post's, i am concerned stephen,are you ok? I know thats a silly question, but i know you understand! I send you much healing wishes, both to you and your good lady wife, lots of love kathy x

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      Kathy scott 2 years ago

      Hi its me, thank you for offering your wheelchair, debbie and all the infomation. I do have a little mobility scooter, cant tell you the look you get from people, the same as when younare in a wheelchair, people get angry, and dont hold back, the things people have said to me. But, you do get the kind people too, helping you in supermarkets. Ill go on debenhams web site, thank you, my daughter popped in today so i got the update on the big day.

      i am still so zonked out....

      donna, i am concerned for you, how can i help you, i know that sounds silly, but i want to be able to say something to help you.please take my hugs,love and healing wishes. Lots of love kathy xx pressing button now fingers x.

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      Debbie 2 years ago

      Kathy I do not know if you have one but if you want to use a wheelchair on the day just to rest in instead of standing non stop you can hire or even dr's can help for the day I believe British red cross hire and age concern can also help with this. Better than getting tired or hurting yourself love. I would let you borrow mine if you were closer. love debx

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      debbie 2 years ago

      Hi Kathy nothing you say is trivia, dress sounds fantastic what a find! Pink would be lovely, I have seen some lovely ivory embroidered accessories around, the embroidery having all colours so would then go with any future outfit? Say Ivory shoes with beading on or embroidery debenhams have some great stuff at the moment is this any help kathy? love and hugs debx

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      Kathy scott 2 years ago

      Page 2. Debbie, like you, i get stooped over as if im being pulled down, as the adhesions strangle mybladder, then a trip to hosp. For bladder stretched. My steps little tiny steps. Donna, i too likeyou fall sleep,tea all down me, chair, hubby just takes the cup and i strip off in shower,im so sorry what you all go thru, so sorry you suffer so much. Stephen, i cant thank you enough for this forum.

      i am hoping i can get to my daughters wedding, this seems trivia,sorry. Sending you lots of love kathy xx here we go fingers x

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      debbie 2 years ago

      Hey hang on a sect Donna look at me always rambling away moaning but I told my hubby about it and he says it is because of years having no one that could understand and then when I have found someone that does it is spilling out of me and the same applies to us all. Isn't it a real pain when it is your favourite pj's and then in the wash and just throw a sheet over the sofa hell that is replaceable you are not hell this is taking so long to type as shaking lets just say started as soon as yours appeared! Trust me once you come down more off the morphine and side effects start to go you will be back to normal mug! and you will get better as time goes as far as the withdrawals so there is light at the end of the tunnel as far as that goes, I am here if you need me so please do not forget I have been there and got the t shirt but sadly it did not come with bottoms ha ha I have put on weight due to the steroids I have to take for other ailments and what exercise do we all get bar shaking with the pain. Yep get totally upset about it all the time everytime I look in mirror I look haggard due to pain, grey or yellow depending on if liver working or not that day and look pregnant, but like I said I do not see anyone. that is the good thing here isn't it you cannot see if my hair is brushed etc love and hugs Deb xx Yeah same rubbish meds and chatting to each other all day on the internet instead of the dusting and hoovering we can no longer physically do um is that bad?

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      Kathy scott 2 years ago

      Morning, just been jerked out of sleep,postman,hubby an swered anyway but awake now...oh to sleep.hello my frie nds. Ha, there was more to my letter, i did say i ordered my dress from catalogue,its blue,deep blue falls from bustline, low pockets,soifmy stomache swells, as ilook8 months pregnant when itdoes swell, this dress will i hope hide it. I thought pink accessories,although, i have never been a pinky girl, blue or mauve,being healing colours.

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      Donna 2 years ago

      Thank you both for your kind words and advice but they won't let me try any over medication until I'm off the morphine. I also live in my p.js I have put on so much weight and my body is so swollen I can't wear any nice shoes I look so pregnant it makes me cry all the time. I go through so many pairs of p.js due to falling asleep with a cup of very hot coffee that ends up all over me I have ruined my sofa with coffe Stains so now drink out of a plastic cup with lid just like a child sorry I know I do go on.

      Here to another week of the same old rubbish

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      debbie 2 years ago

      Hi Kathy that is why my pjamas are the best for me as mine goes up and down I can have some jeans on one minute and they are baggy then next minute to tight and as the bed is most comfy for me compared to sitting which is so painful in pelvic area my pj's are the best. but yeah I know where you are coming from what to wear when you go out end of the day we want to look nice but what size is our waist going to be throughout time out? elastic waists and loose tops oh the days when we wore fitted clothes! I could cry but over the years I think I have cried myself out and just get depressed looking at clothes so just head for the pj's and go home end of the day who do I see - yeah no-one so why bother. Must work out a way we can all talk Kathy when we talk we are just saying what the other one is going through it is like describing what we see in a mirror. love hugs and healing to you dear friend debbie xxx

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      Kathy scott, 2 years ago

      Me again, re. Wedding belles, its been difficult, my "stomach"swells when it wants,due Gastritus, adhesions, nausea ipromise i look 7 months pregnant, i could cry, i bave to wear,cardigans or large tops,but then i look weird i have skinny legs

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      debbie 2 years ago

      Hi Kathy we keep meeting each night it is no way to live is it hubby and dogs are snoring and I am like you both so my heart goes out to you both tonight and always there has to be a answer somewhere for us they are making such headways in other areas how about them using some energy to help us as we are living in a nightmare of pain torture, I would love to have one day without pain and just the relief and sleep a whole night and not a half hour or odd hour here and there it would so help to recharge batteries to cope with it. thank you for the info on your meds Kathy going to show dr to see if any good for me I am so desperate I will try anything, and yeah tried sleeping tablets pain goes through those and wakes me! love and hugs Deb xxx

      DONNA are you ok darling we are both here for you xx

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      debbie 2 years ago

      hi girls I am on Gabapentin teva 2x 600mg 3 times daily this is for the nerve damage (used for other things also) caused by the adhesions given this due to the latest findings on adhesions this helps a lot this enabled the drop in morphine the pain I am in at the moment is worse though due to infection and flare up of cysts on liver and adrenal glands but like I said my doctor checks all the time for latest findings she is lovely and supportive it is the others that are not. Hey girls going to admit to you what a lazy so and so I am due to tummy so sensitive to anything I 99% of time stay in pj's as more comfy as lose around tummy and groin (yeah even there between legs are adhesions) me and my pj's are best friends totally peed at the moment though favourtite pair in wash wish I had brought a couple of pairs of them at the time. Love and hugs to you both your friend debs xx

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      debbie 2 years ago

      Hi Kathy wrote back to you and it has not appeared it keeps happening!well here goes again! well so many family things I have missed out on to upsetting to list. I feel so much for you love but just rest and try to get the energy etc for the big day and go to dr's and say you have her wedding and you need their help to enable you to be there in the form of pain relief etc and what can they do extra for that day. I was told I could have done that after a wedding I missed! just for that extra meds but not all the time but ended up on them anyway it is worth a try love anything to help you on the day. I just wish there was a way I could give you my phone number safely and then we could chat. love and hugs friend debs xxx

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      Kathy scott 2 years ago

      Hello donna so good to hear from you. Im so very sorry to read that you are in a sad place, i have just gone back to what i sent about these stronger meds im on, sorry i know i go on, but there not there,anyway, donna, i cant understand the lowering of your medication, although, when i saw you meds, you are an amazing sttong lady to cope with your meds. I do waffle on and ment to say this at the beginning. My gp woukd not increase my morphine,i saw her 2 wks ago, so we left it as is plus oromorph. She did however, increase my pregabalin, i used to be on 2 x 100 mg per day, but it is nowvraised to 600mg per day, i did get the tablets all mixed up, and the gp rang me to explain what to do. I have been totally zonked out, but i have had the *edge* taken off in my pelvis, other bits not so, its still roaring, that's why i awake, hotwater bottles etc.,would this tabletbe any help to you? This is prescribed for epilepsy,anxiety and pain. Perhaps this would not be strong enough for you my dear friend., i hope a little info. On my meds, my help. Thank you so much for your kind words donna, i laugh and take it in good part, but inside, well you know. My youngest is the last to leave the nest,its very sad, but there it is.Lots of love,peace and my healing wishes.kathyxx

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      debbie 2 years ago

      Hi Donna hey honey you still there and want to chat? I am here clock watching for meds that are not working but hey would not like to try without if you know what i mean and yep being a zombie is less pain but do not know the world around us but they lower it and bang pain central I am still working out what is best as myself I do not know how much more of this pain I can take as it is knackering and really unbearable. love deb xx