Crohn's Disease - My Story

Abdominal Pain is the worse you can imagine
Abdominal Pain is the worse you can imagine | Source
Ideal diet for Celiac's Disease and Crohn's Disease
Ideal diet for Celiac's Disease and Crohn's Disease | Source
PAREGORIC - dosage instructions
PAREGORIC - dosage instructions | Source

Diagnosis - awordlover's story

I was officially diagnosed with Celiac Disease (gluten sensitivity) in 1963, when I was around 10 years old. It was called "Sprue" back in the early 1960s. From the time I was a toddler, belly pain (called colic until I was 2), mouth sores (ulcers), abdominal bloating, vomiting, alternating bouts of diarrhea and constipation were my constant complaints. As a very young child, one doctor told my parents I had gastritis. I was always on the thin side, was considered underweight, anemic and iron deficient. I was sick. A lot.

In our house, Paregoric was given for almost anything that ailed you - everything from diarrhea to stomach pain to coughs to tooth pain. It was a derivation of opium, a narcotic, did not require a prescription (it was sold over the counter in tiny brown bottles) and was widely used until the 1970s. I can still remember the taste of it. Unfortunately, dosing with paregoric masks illnesses and therefore delayed diagnosis for many of its users.

Supplemental vitamins were always a part of my nutrition. No one else in our house was thin like I was, we all ate the same foods, yet I was the one who was skinny and got sick. By age 10, I was nearly 5 feet tall, weighing only about 60 pounds.

It became an annual medical occurrence to go through upper GI and lower GI series and I dreaded it. I can still remember getting so sick after each test, the taste of the chalky barium I had to drink and the awful feeling of the barium enema followed by a series of Xrays. And being sick with belly pain followed by chalky stools for two or three days after the test. The insurance my father had from work covered this test once a year.

To add insult to misery, I started with menstrual periods a week after my ninth birthday. The pain was unbearable. Losing all that blood made me more anemic and iron-deficient. Four to five days a month put me flat on my back in bed, with heavy bleeding, absent from school, with a hot water bottle, Donnetal, Paregoric or Belladonna for pain (whatever was available in the medicine cabinet), which helped a bit. When the gas pain and diarrhea kicked it on top of it, which it always did, I thought I was gonna die.

My first trip to the gynecologist at age 9 1/2 years old resulted in being prescribed birth control pills to regulate my periods, which were occurring from three to eight weeks, lasting four to five days. The longer I went without a period, the worse it was. The GYN said the birth control pills would help make the pain less severe, but you couldn't prove it by me. I wasn't allowed to take medication on my own; it was doled out by one or the other parent, who often did not compare notes with each other. No dosing happened more than overdosing.

By the time I turned 11 years old, the doctors diagnosed "ileitis". My parents didn't hear "Your daughter has Crohn's Disease," until three feet of my ulcerated colon was removed and I was given a temporary colostomy.

The temporary colostomy was reversed one year later when I was 12 1/2 years old. The thinking at the time was to give my colon a chance to heal without stressing it with bowel movements. I hated it; it was supposed to be for SIX months, but I was still exhibiting a lot of gastrointestinal symptoms, so the docs decided to let it go for 12 months. Never tell a child a date and then renege. It was a very long 12 months.


MAYPO - A STAPLE AT OUR HOUSE
MAYPO - A STAPLE AT OUR HOUSE
OATS DO NOT AGREE WITH EVERYONE WITH CROHN'S DISEASE
OATS DO NOT AGREE WITH EVERYONE WITH CROHN'S DISEASE
FARINA - WHOLE WHEAT, A CELIAC & CROHN'S DISEASE NO-NO
FARINA - WHOLE WHEAT, A CELIAC & CROHN'S DISEASE NO-NO

"She Complains Too Much"

About six months before the colon surgery, my belly complaints took on a different tone. At that point, my complaints fell on deaf ears because I had been complaining all my life. I often overheard my parents on the phone or in mixed company - "She complains too much." With the start of menstruation, any pain I talked about was attributed to that or gastritis. This time, professional care came too late. I had a "hot appendix" which resulted in an emergency appendectomy. Unfortunately, my appendix burst and I got peritonitis.

Although my Celiac symptoms started when I was still a toddler in the 1950s, that diagnosis would never be considered in a young child. A milk allergy was ruled out early on. However, everything dairy was an antagonist and as children, most of our diet was dairy, sugar and starches. So I always had abdominal pain, bloating, diarrhea and constipation which doctors called gastroenteritis, and in conversation my parents shortened to gastritis.

When the doctors said I had appendicitis and needed emergency surgery, I thought my problems would be gone with the removal of the appendix, thinking that had been the problem for all those years. Remember, I was still a young girl then. It took a long time to recover from the appendectomy and peritonitis. The gas, bloating, abdominal pain, vomiting and alternating diarrhea and constipation returned with a vengeance after the appendectomy. It became an everyday thing with me. More medications were ordered for symptoms and dosages were adjusted. All played havoc with my blood sugar, vision, mobility, and stamina.

My Gran came to take care of me while my parents worked and my brothers went to school. She prepared cream of wheat, farina, puddings, buttered cinnamon toast and hot tea for me to eat most days. And most days I was as sick as a dog.

Gran and my parents had no idea that the foods they were feeding me were making me sick. Doctors did not tell them or me half of the foods and types of flours that should have been eliminated from my diet, not to mention fried greasy foods. So my diet went relatively unchanged growing up in an Irish American household in the 1960s where there was no extra money in the household budget to buy 'special' food for one family member. If the food served was good enough for the majority, it had to be good enough for me.

Because of fairly consistent flare ups, I have been on sliding scale doses of steroids (oral Prednisone, IVSM, Decadron) for Crohn's Disease since age 11. In September 2011, I turned 58 years old.

Oh, I forgot to tell you -- I was diagnosed with Multiple Sclerosis at age 23, and Rheumatoid Arthritis at age 33. Oral Prednisone is the medication I take for all three autoimmune diseases, IV Solumedrol for flares.

Infertility, Fatigue, & Immune Diseases - awordlover's story

There was no way to know at that young age, the future repercussions of all the medical decisions that were made for me by others. Just as there was no way to know about what certain medications would do to me in the long term.

What added to my symptoms was the use of oral contraceptives at an early age, smoking (from age 13 to 30), unregulated diet, stress, depression, fatigue, untreated acid reflux and the fertility drugs and treatments. I think if I had known then that birth control pills, smoking, stress and untreated acid reflux (GERDS) were all antagonists, that I would have pleaded to the powers that be to help me. Hindsight is 20/20, but hopefully others can learn something from my experience.

After a tonsilectomy (age 5) which resulted in lacerated larynx and loss of speaking voice for 4 years (I could sing but not speak), adenoidectomy (age 6) which resulted in lifelong sinus problems, reoccurring insulin dependent diabetes induced by steroids, four bouts of mononucleosis before my appendectomy with peritonitis, colon resection, two intestinal obstruction surgeries, surgeries for removal of adhesions, D & C's for breakthrough menstrual bleeding, eleven years of all types of fertility treatments, five in vitro procedures none resulting in a live birth, seven laser surgeries for endometriosis (which always grows back), reproductive organ reconstruction surgery due to endometriosis, seven miscarriages, two live births, gall bladder surgery, three back surgeries, two ischemic (brain) strokes, four benign brain tumor surgeries for meningiomas (which caused MS flares, memory loss, numbness and blurred vision) partial then a complete hysterectomy, complications of multiple sclerosis (more than 20 brain lesions), rheumatoid arthritis, chronic fatigue, GERDS, dysphagia (swallowing issues) due to MS and strokes, both Addison's and Cushing's Disease from steroid use, years of physical, occupational and speech therapy to regain what I lost in function due to all of the above, people say it is a wonder I am still around.


The Stress Factor - my decisions

Besides diet, stress plays a big part in any digestive disorder. If you get your diet squared away and still have a moderate amount of stressors going on, you are defeating your purpose in trying to get well. It is very easy to say -- cut down on your stress -- it is another thing to actually be able to do it.

When you add being a sickly child living in a constant state of flux between fighting parents who happened to also be dependent on prescription drugs for anxiety and depression, and who also happened to be functional alcoholics (meaning they went to work mostly every day and drank from the time they walked in the door from work until they crawled up to bed - and weekends blended into one very long day), removing stress from your life is just not possible.

Removing stress from your environment is probably the most impossible thing for any person to do. Stress is everywhere and comes in many forms. It should not be out of the question for anyone to have a little help with low dose Ativan or similar drug because not many people can do it all on their own without picking up, moving to another city, leaving all ties to their former life behind. Almost like going into a Witness Protection Program, without the protection of the authorities. ::smile::

For me, the changes I put in place came with a whole new set of stressors. I became the sole provider for me, living on my own, supporting myself, paying to go to college and later medical school, paying rent for an apartment, holding down two part time jobs while in med school, paying for my own medical insurance. Some said I had gone from the frying pan into the fire.

In actuality, I had total control over the stressors after the changes. I could remove any one of the stressors at any time. Because none of them involved having feuding family members in my life anymore, the stress was on a different dimension. I was still getting sick, just not as much. Slowly I weaned off a lot of the medication I had been on since early childhood in order to be able to function, hold down a job and go to school. Some people in my life saw my schedule as one big stress factor, but I loved it. I was achieving a dream for a career I had been told was totally out of my grasp. I was always told I would never amount to anything, that I'd be better off finding a husband and let him take care of me for the rest of my life.

Not a chance.

If you don't try, you will never know if you would have succeeded. If you happen to have a whole laundry list of medical problems, then what better field to go into than the medical field. My education was important to me but after graduating from high school it was no longer important to my parents. Anything I wanted after that, I was on my own.


CREAM OF RICE - Fat free, gluten free, and cholesterol free
CREAM OF RICE - Fat free, gluten free, and cholesterol free
GLUTEN FREE PRETZELS
GLUTEN FREE PRETZELS
GLUTEN FREE COOKIES
GLUTEN FREE COOKIES
GLUTEN FREE ROLLS
GLUTEN FREE ROLLS
GLUTEN FREE PASTA
GLUTEN FREE PASTA

Diet and My Medication

I think the hardest part of any diet is finding out what is not on the list of approved foods. Favorite foods that you didn't think twice about eating before and had no idea they were making you sick are now replaced with other foods.

Don't deprive yourself - substitute.

If you deprive yourself, you will never stay on any diet. Don't try to go on a gluten free diet all at one time. I think it is best to do it gradually. By the same token, when saying goodbye to foods you love, do it a little at a time - say eliminate one food per week until you have eliminated them all. See if the same food has a gluten free version to substitute so you can still enjoy that food. It may take quite some time to totally get on a gluten free diet, but by doing it slowly, you won't feel deprived and therefore will have a better chance for success.

The trick to any diet involving treating any digestive system disease is to keep food in your body at all times. That means eating six to seven small meals per day, getting enough fluids, and supplementing with vitamins and minerals whatever you are not getting from your food.

So what do I eat? Actually I eat very well, all things considered.

  • Unbreaded, baked or grilled chicken, turkey, fish, and meats.
  • Eggs - hard boiled or scrambled without milk added. I don't care for egg substitute
  • Gluten-free cookies, cakes, pasta, snacks
  • Rice (I use white unprocessed rice because I don't like any other kind)
  • Anything that has only one ingredient listed on the package is usually okay
  • Bananas - this is a perfect food because it has everything a body needs
  • Potatoes - in its original form, not instant mashed potatoes
  • Vegetables - flash frozen, I like them steamed in microwave - carrots, green beans, some broccoli (makes me a bit gassy but it is ok once in a while). NO CORN because it hurts me (comes out the same way it went in).
  • Cereals - as long as they are gluten free. All rice foundation products. Rice Chex, Cream of Rice hot cereal, anything that doesn't have wheat, oats or ingredients I can't pronounce in it.
  • Fruits - mostly all fruits except pulpy
  • Milk, cheese, margarine - in moderation. I use no cooking oils for my meals
  • Desserts - all gluten free - If I cheat or eat something I'm unsure of, I medicate immediately after.
  • Fluids - 1% milk, most clear juices, spring water, tea
  • Sugar - absolutely no sugar substitutes in any food or drink. Just reading the label should scare you!
  • Cookies - shortbread cookies, crackers -no wheat additives

Try to stick to foods in their original state. If it has a lot of window dressing, chances are it has something in it that will hurt you in a few hours.

If you do eat something that you know will cause you pain or discomfort, medicate as soon as possible after the meal. I use Phazyme (Generic: Gas-Ex -has simethecone ingredient) to cut down bloating and gas discomfort after most meals. I take Nexium twice a day and Zantac two hours before bed so I don't get reflux. I use Bentyl for cramping and spasms. I take one capsule of Psyllium per day to make sure I get enough fiber. I drink 8 to 10 bottles of spring water per day.

I do not include Remicade, methotrexate or Humira in my treatment plan by personal choice. What I do take is Flagyl (an antibiotic), Bentyl (PRN for spasms, cramping), Prednisone (steroid -sliding scale dosages for MS, RA, and Crohn's), Vitamin D3, Calcium Magnesium, Selenium with Vitamin A, E, & C, Vitamins E, B12, CoQ-10 with phytosterols, Glucosamine Chondroitin, Psyllium (for fiber), Imodium, daily Nexium with Zantac at bedtime (for GERDS), Aleve (PRN for pain), Compazine (PRN for nausea) and Ativan (for everything!)

What works for me may not work for you. You have to do things by trial and error to get a plan in place that is tailor made for you. These are the things that have worked for me and I only pass them along to you as suggestions.

I wish you well in your journey to wellness.

This is awordlover's story, not yours. Do Not Copy

This means don't copy this article. It also means if you DO copy, a DMCA notice of copyright infringement will be filed against you.
This means don't copy this article. It also means if you DO copy, a DMCA notice of copyright infringement will be filed against you. | Source

Get A Second Opinion

I think if I knew then, what I know now, I might have taken control of my health a lot sooner than I did. I also think if you are still sick after six months to a year with one doctor, chances are you have not gotten adequate medical care.

I hope my story empowers anyone reading this to always question what medical professionals tell you, always do your own research, and always get a second, third or even fourth opinion.

Published 2/4/2012 by Anne DiGeorge

Update 2/2/2014 by Rachael O'Halloran - replaced pixelated Copyscape logos, provided photo attribution and corrected format issues

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Comments 10 comments

Ghaelach 4 years ago

Morning Anne.

My heart goes out to you.

I read about Crohn's Disease as I researched my last hub on Clostridium difficile (c.diff).

You have had a tough life and I think your decision to take control of your life was a wise choise.

The problems you had as a girl or young woman I can only hope are behind you, but I fear not.

My problem with Chronic Osteomyelitis is a small problem after reading your life history.

I won't go writing something like get well soon, as is often said to me. I only know that our illnesses will leave this earth when we leave.

Take care Anne and I wish you a stress and pain free weekend.

LOL Ghaelach


awordlover profile image

awordlover 4 years ago Author

Hi Ghaelach, Thank you for your comment. I do believe most of the "stuff" I went through as a young girl is behind me but I have a lot of residual leftovers.

Multiple Sclerosis, Crohn's Disease and Rheumatoid Arthritis will never leave me, but thankfully all the fertility and endometriosis problems have been surgically excised. Oh, how nice it would be to be able to do that with everything else! LOL

With all that I have experienced in my life, I am still thankful for what has come my way, because without it, I would not be the person I have become today. I have good days and bad days like other people do, it is just our origins that differ in most cases.

Thank you for stopping by and introducing yourself - I'm spending my afternoon visiting your hubs.

Anne


medicinefuture profile image

medicinefuture 4 years ago

awordlover, your articles with personal touch are really worth reading you are the living example and inspiration to many to lead a life fighting multitude of diseases.your grip on subject is really worth appreciating. vote up is very small a thing for you.you are greater than vote up. may God bless you with more spirits to write more on health topics. keep us awaiting your new ideas and innovations


awordlover profile image

awordlover 4 years ago Author

TYVM medicinefuture. I'll keep writing as long as readers keep reading. I've been visiting you too :-) Love the last one on pancreas gland. well done! And - TYVM for your kind words.


KoffeeKlatch Gals profile image

KoffeeKlatch Gals 4 years ago from Sunny Florida

I was fascinated with your approach to taking over your life. I read your list of foods that you eat and it appears to be very similar to mine. I also have multiple sclorsis and a few various autoimmune diseases. I guess they tend to come in bunches.

I think we need to take it one day at a time and just keep on moving. Good luck to you and God Bless.


awordlover profile image

awordlover 4 years ago Author

KoffeeKlatch Gal...I learned early on in life that docs do not know it all and they don't know my body like I do. Even though some docs don't care for educated patients, it is imperative in this day and age to be educated about your health. Especially with docs having very busy practices and not able to dedicate time and research to each patient. BTW, most autoimmune (AI) diseases come in two's or more. You are a magnet for more, once you get one. Each patient is different in how they react and deal with their AI's and also how they treat them. We do what we have to do and what works for us and that plan can change at any given time. Mine does. As we get older, foods that were okay before, become not okay now and the diet and meds have to be adjusted. I am an administrator of an AI group on Facebook covering over 80 AI diseases. I'm still learning as I meet new people there. If you are on FB, put a search in for MS and Other Autoimmune Diseases and you will find us. We are always open to new members. TYVM for your comment. :-)


Pamela Kinnaird W profile image

Pamela Kinnaird W 4 years ago from Maui and Arizona

You are a very brave woman and you have given so much good advice in this hub. Your list of safe foods to eat is especially appreciated. I've devised my own list of safe foods this past fifteen years and it is almost identical to yours. Mahalo nui loa.


awordlover profile image

awordlover 4 years ago Author

Hello Pamela Kinnaird W, I think probably my list of safe foods may very well be different from other people's only because of culture. Certain ethnic foods I would never eat are normal every day fare for others. We each have to do whatever it takes by trial and error to get a list of what is not going to make us sick. Thank you for your comment. :-)


lafamillia profile image

lafamillia 4 years ago from Soutcentral Europe

I must say that I admire You. I am proud to have an follower like You :) What an interesting, but still effective approach to Your live, and to writing of Your experience.

For sure, now You have me as an follower - but... You see, in a way, we have something in common. You've battled Your decease, and I still have to battle mine. I was an hard-opiate addict, starting in my 14th, to my 20th year - when I started my Methadone Treatment. I left an hub about my fight - so, if You decide to read someone else battle, there is mine. It's hard- so prepare Yourself , but it is realistic. Maybe too realistic, in a way. :) I have published some more hubs, I would say really great - so, if You want to - here I am, ALWAYS FOR YOU. I am here to support You, and if You want - to talk to You. I am alone in this fight, and in this life - and I know how it is.


awordlover profile image

awordlover 4 years ago Author

lafamillia, thank you for your comment. I have read some of your hubs and left comments.

I think each of us face our battles with whatever "life equipment" we manage to pick up along our way, whether it be friends, family, or strangers, good advice or bad. The lessons we have learned play a big part in our both our physical and mental healing, which I believe will always be ongoing throughout life.

I visited your Facebook page and photos. It looks like you have a good support system of friends. While families pass out of our lives (in one way or another), we are not alone as long as there is but one person we can call friend.

Boris, I hope we both find something inspiring from each other. I wish you well in your journey toward recovery.

Thank you for your visit.

Anne

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