- Diseases, Disorders & Conditions
Living With Crohn's Disease
Having recently been diagnosed (tentatively) with Crohn's Disease, it's something I'm pretty interested in at the moment. Hopefully this article will help others who have also been diagnosed with this problem.
I'll be writing this more like a diary of living with Crohn's than an information source - there are already plenty of those sites on the web, and a quick search will find you many of them.
If you have concerns about your health, please see a Medical Practitioner.
The Start Of The Problem
.......a painful interlude.
One day, out at a party, I developed a very painful stomach ache. It felt like wind, and I was also constipated. We had to leave the party and go home, because the cramps were so bad. In the car going home, I was jack-knifing with pain. When I got home, I had about three bouts of diarrhoea, and that seemed to ease the problem, so I put it down to something I'd eaten, and thought nothing else of it.
A couple of months later, after eating lunch one day, the same thing happened, only this time it didn't stop after a couple of hours; it continued for the rest of the day, and all night. At some time during the first afternoon, blood started to appear.
My partner was willing to drive me to hospital during the night, but I decided to wait until morning, and duly turned up at the local hospital emergency department at 0830.
I hadn't had anything to eat or drink except a cup of tea, since the night before, as I felt a bit shocky and nauseous, so was just sipping water occasionally. While being interviewed by the triage nurse, I was told, very abruptly, "Nothing to eat or drink!", so I went thirsty.
Several doctors and tests later, on a drip and still with nothing to drink, at 530 that afternoon, I was finally admitted to hospital, where I stayed for five days, much to my surprise. I'd thought I'd get perhaps a little medication and be sent home. They took it a little more seriously than that.
Do you or anyone you know have Crohn's disease?
Further Crohn's Developments
After five days in hospital, and many tests later, they discharged me with antibiotics and a couple of appointments with outpatients. One of these was for a colonoscopy - not the most pleasant of procedures, especially the few days prior, when you have to watch your diet, and take special medications. The medications also make one frequently dash to the smallest room in the house, and develop soreness in an unnamed place. This part is much worse than the colonoscopy itself!
After the colonoscopy, it was a matter of waiting for the appointment to find out what the problem was. They offered two options, ulcerative colitis, or Crohn's disease, which is the nastier of the two options, and towards which they were leaning. I saw the pictures of my intestines, and believe me, it wasn't pretty!
The next thing to happen was a long wait for an appointment with a gastro-enterologist, to get more information, and to find out what treatment was available.
Of course, I did a lot of research, as this was and is a problem which won't go away, so I'll obviously have to live with it. Maybe diet will play a part, but that's something I've yet to discover.
I think l was a bit shocked by it all, as it seems that this problem usually is diagnosed at about 20 - 30 y.o. and I'm a lot more than that! Anyway, whatever the outcome, it's here to stay, it seems......
No Appointment Available
......see your GP if you have problems
Well, the heading says it all - I received a letter from the hospital, informing me that there was a twelve months waiting list to see a gastro-enterologist, so if I needed help or antibiotics, see my GP.
Hopefully, I won't need to, but since I still haven't been diagnosed with certainty, I'm left wondering what I've actually got. Could be Crohn's Disease, or it could be Ulcerative Colitis, or maybe something else?
Whatever it is, I will have to live with it, and do more research on diet and how not to exacerbate it. Certainly I don't want to spend any more time in hospital, as it is not a good place to be, no matter how nice the staff are.
All Quiet On The Crohn's Front
....... thankfully !
The Crohn's kept pretty quiet for the next few weeks, and I had no problems to speak of.
The more I find out about this disease, the less I want to be diagnosed with it. Guess I'm lucky, really, as it seems to be pretty mild in my case: so far only two severe attacks, although the second did put me in hospital for five days...... not a pleasant time.
It has come upon me in my 60's so I may well be luckier than those who get this disease in their twenties, or even as children. The eventual outcome may even be a colostomy bag - not a great prospect, I must say, although this wouldn't happen until after a couple or more bowel operations, if they ever become necessary.
At this point, I'm just trying to live as normal a life as possible, and find out which foods, if any, exacerbate the problem, so that I can avoid them.
What do you avoid? Are there some foods that you love, but just can't eat any more? Let me know in the comments, please.
Carrot Juice and Hospital Outpatients
About a month ago, an acquaintance who's interested in natural therapies told me to drink carrot juice. Unfortunately, I didn't ask how much, so have been guessing.
Currently I'm drinking about 250 mls per day, and have been for the past few weeks. It may be coincidence, but so far, so good, although the past few days, there have been rumblings again. Could it be because I got a bit slack about the daily carrot juice?
As I've mentioned before, it's difficult to get an appointment at the hospital with a gasto-enterologist, and I was told it was a twelve month waiting list, but it's only been about four months since I was told that. Surprisingly, yesterday I received a letter from the hospital, letting me know I have an appointment in a couple of months!
Perhaps I'll finally be given some advice on living with this.......
Waiting Rooms Are No Fun
.....The hospital visit.
The time for the hospital appointment finally arrived, so off I went to arrive on time at the outpatients department. I know they don't always run on time, but if you're there on-time, or even a little early, your file will be ahead of those who came late. That's my reasoning, anyway.
After a fairly short wait, I went in for the much awaited doctor's appointment.
Well, I started off with a very pleasant medical student, who asked the usual questions about consent, etc. (It is a teaching hospital, after all) I had no objections so she started to take the history. Before we'd finished in came the Doctor, who seemed surprised the student hadn't finished the history.
Well, to cut it short, I didn't learn a thing I didn't already know, and it was a complete waste of time, in my opinion. If it's so hard to get an appointment, and there is such a long waiting list, why not give the appointments to those who really need them?
Currently, I'm not having much of a problem with the Crohn's so someone else may well have been able to have that appointment. Now I have to go back in January for another checkup, and quite frankly, I don't see the point. Perhaps someone with more experience of this disease can enlighten me? :-) I actually cancelled the next appointment, and haven't been back.
I'm So Lucky....
.....It could be a lot worse.
Shortly after my hospital visit, while watching a current affairs program on TV, I saw a story about a child of about ten, who had been born with problems, and had operation after operation. To cap it all off, he had just been diagnosed with Crohn's Disease. What a horrible prospect, and he was so happy and positive, helping others.
This really made me think that I am very lucky, even though I have this problem. As I'm in my sixties, it's highly unlikely the Crohn's will progress to the stage of a colostomy bag in my lifetime, even if it does get bad enough to require a bowel resection.
I guess what I'm really saying is that no matter how bad things look, there is always someone worse off than you.
And the disease is still staying away! Hopefully it will do so for a long, long time. I certainly don't miss it!
If you have Crohn's, please try to be positive - maybe it will go into remission for months, or even years. Live with it, change your diet, do whatever you can to have a normal life, and enjoy yourself NOW.
Oh No, Not Again!
After a couple of years of relative inactivity, the Crohn's struck again.
We'd had dinner and were just relaxing with our new cat, sitting watching TV when the pains started. After that, it was trip after trip to the bathroom. Not that much sleep for either of us.
This particular attack was one of the worst I've had, as I started to bleed again. We decided to go to the local hospital, and see what they said, and hoped we'd get antibiotics and I could come home.
No way! The hospital was bed-locked, and the only people getting into the emergency room were those with broken bones, and problems which they could treat and send home straight away. Since I might have had to stay there, I didn't get called.
Not being a very patient sort of person, after three hours of sitting on the most uncomfortable seats in the world, I decided to go home, since I was feeling better, and the pains and bleeding had eased.
It turned out ok, after watching my diet for a few days, and sticking to soft foods and liquids. Bananas are good for you, and are great in this situation. How I'd love to get rid of this problem!
Oh No - It's Back !
......And it's all my fault!
After months of comparitive quiet on the Crohn's front, this week I've been having pains again, and the usual other symptoms associated with the disease. I'm sure I don't need to go into them here, for fellow sufferers! :-)
It's all my fault too. This week I decided to cook a curry for dinner, but unfortunately, was a little too heavy handed with the curry powder. Although it tasted beautiful, the results were anything but that.
There was even a meal left over for the freezer, but when that gets eaten, it will be somewhat weaker, since I'll be adding more vegetables to it.
Hopefully, these symptoms will go away in a couple of days, and it won't lead to a full scale attack - I have to go to a wedding on Saturday.
No, Not Another Attack!
After the curry disaster, I was pretty careful with my diet for a while, so the Crohn's once again went into remission, and I haven't had any symptoms for quite a few months now.
Just as I was beginning to feel safe, it has decided to make a re-appearance. This time, there doesn't seem to be a reason, unless it's the stress of the Xmas holiday season.
Of course, the worst of the pains has to be at night, when I'm trying to sleep, but at least it hasn't become so bad that I don't get any. Hopefully, it will stay that way.
At the moment, I'm eating very bland foods, and avoiding acidic drinks, and anything else that could possibly add to the problem. The diet is boring, but it's better than another stay in hospital, that's for sure. Mashed potato is a current staple food.
.....Oh No, Not Again. When the rumblings start, I wonder what I've eaten this time to set them off. Hopefully, I'm learning to avoid attacks, and there are some foods which I've learned to avoid. Here are some of them:
- Acidic foods
- Too much pastry
It doesn't take much to upset chancy tummies, does it? I should know better by now. Guess it's because nothing much has happened recently, and I became complacent. Not a good thing.
Oh well, at least I didn't eat half a packet of liquorice allsorts this time. Now that really gave me an uncomfortable day, but I do love liquorice.... guess it's among those things I'll have to cut down on from now on. :-)
Travelling With Crohn's
A Few Tips
Every had to go on a trip, and had that sinking feeling? You know, "Oh, I can't do that, what if I have an attack?" It's a common reaction to our problem, but don't let Crohn's rule your life.
Later this year, I'll be going on my first overseas trip since being diagnosed, so I'm doing some planning now. Here are some tips I've come up with:
- Take your medication with you
- Some anti diarrhoea tablets such as Immodium are a must
- If you get stressed travelling, see your Doctor and get some mild relaxants
- Take some pantipads with you, even if you don't normally use them
- Watch your diet, don't try anything too exotic which may affect you
And most importantly, Enjoy your trip!
A New Treatment
......Article from The Lancet
My partner mentioned on one occasion that he'd seen something on TV about a new treatment for Crohn's Disease. I hadn't heard about it, so did a search.
This is the site I came up with - it's a little too scientific and technical for me, but hey, I'm only a lay person! If you're interested, here's the URL of the article.
Anything which gives hope of relief from this problem is to be welcomed, that's for sure.
This may help IBS and Crohn's sufferers ;
Recently I started using Glucosamine as an aide to a problem in my shoulder, and decided to do some research on this supplement. After all, one does need to know what's going into one's body! :-)
Discovered that Glucosamine is an additive to many health products which are sold as IBS treatments. It is useful in adding a lining to the intestine. I'm going to try Glucosamine and Fish Oil combined, as that may ease the constipation side of the Crohn's.
The dosage isn't all that high either, and it's found naturally in the body, mostly in the joints and cartilidge. That means it probably won't have much in the way of side effects, but check that one out for yourself, as I'm no expert here.
Anyway, just though I'd add that snippet of information to this lens, in case it may be helpful to some of you.
Note: Since I wrote this, Glucosamine has been somewhat discredited, but I've left this in the article for interest.
Links to Health Pages of Interest
- Health Help from the Mayo Clinic
A very useful site, with plenty of information