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In remission for almost 30 years

I was first diagnosed with Crohn's back in 1982. Although I had been having the symptoms for years, none of the doctors back then knew what Crohn's was. I ended up in a hospital emergency room, malnourished, with a high fever, unable to keep even water down, weighing just 83 pounds. Luckily, one of the young doctors on duty that night correctly diagnosed me and was able to save my life. I was in the hospital for two and a half weeks, with TPN and lots and lots of drugs. I took prednisone for almost a year (hated it!) and responded well to sulfa.

After a year, I felt pretty much back to normal, and stayed on sulfa for years, allowing me to stay in remission. I learned what to eat, what not to eat, and knew what symptoms to watch for. I went in for annual colonoscopies, and always took a hand-held tape recorder along to tape my conversation with the doctor afterwards because otherwise I'd have no clear memory of what he said. I also learned that I could make appointments with two doctors at once so they could talk to each other, and I could participate in the discussion.

About five years ago, I developed a bad rash, all over my body, and the doctors finally figured out that I had developed an allergy to sulfa. I stopped it and the rash went away. I tried Pentasa and Asacol, and developed allergies to both of them after a few months. So I stopped everything and was fine for about five years. No drugs, no Crohn's.

A recent annual colonoscopy showed that Crohn's was active again although I was still pretty much symptom-free. My doctor prescribed Azathioprine, and that seems to be working fine, with no nasty side-effects. About six months ago I also developed really severe constipation, which I never knew could be caused by Crohn's because I have always had the opposite symptom. I'm trying to get that under control, so I can return to full remission.

My advice to any of you who are recently diagnosed with Crohn's is to find the best doctor you can, ideally someone you like and trust. I was so lucky to find the doctor I did in the emergency room that night, and I've learned a lot from him about how to advocate for myself as a patient. Whenever I had some new symptom, he would always ask: "What do YOU think it is?" and when he offered solutions, he'd offer three (one was always "do nothing"), and let me choose. Unfortunately, he left the practice about three years ago, and I chose another gastroenterologist recommended by my gp, and I never liked her -- she just didn't listen and she always insisted I had ulcerative colitis instead of Crohn's, so I could have a colestomy if things flared up again. When she prescribed Visicol for a prep for my colonoscopy last January (because they don't use Go-lightly any more and I'm allergic to sulfa, which was a key ingredient of the alternative), it made me so violently ill that I was unable to have the colonoscopy the next day. That was the last straw, so I switched doctors (I called my original gastro doc for a recommendation), and am much happier.

At the time I was diagnosed back in 1982, I had just met Madeleine L'Engle, author of A Wrinkle in Time, and she told me she also had Crohn's and had been in remission for 20 years. She gave me hope at a time when I needed it. I also met another woman around my age with Crohn's that first year, and she introduced me to some great foods I could eat that weren't white or bland -- corn bread! Nepali food! -- and that helped get me through; otherwise I would have been living on a diet of cottage cheese, white chicken, and bananas. I think it's important for Crohnies to hear from people who are in remission and who are symptom-free, or who have active Crohn's but have found ways to cope with day-to-day life, and who are able to maintain a sense of humor. It's hard to stay optimistic when you are first hit with the bombshell, but knowing that it is possible to leas a happy and productive life really helps you make it through the bad times.
 

Jennifer

Adminstrator
A tape recorder is a very good idea. I see a lot of people on the forum asking what's wrong with them because they forgot what the GI doc said. As far as the food/diet, it just goes to show how different everyone is and that people should find foods that work for them rather than following random diets that worked for Joe Schmo in the past. Keep up the good work! :D
 

xJillx

Your Story Forum Monitor
Your story was so wonderful to read. It really gives me hope. Thank you for sharing.

By the way, that must have been great to meet Madeleine L'Engle. She is a skilled author. Though science fiction isn't my first choice, I read A Wrinkle in Time with my 7th grader students and they just loved it.
 

Dexky

To save time...Ask Dusty!
Great story K! All these long remission stories give me so much hope for my son!! Thank you and good luck for many more years of remission!!
 
hello those who need hope

I did not get Crohn's badly in the sense of it doing much damage to me. It started after I gave birth to my first but was not diagnosed for another 9 years. It was the only bowel attack that I have ever had in front of a doctor. Doubled in pain on his floor one minute and running out the back to his outside toilet the next and being unable to answer them waiting on the outside of the door because of the pain. There's not many attacks (partial bowel obstructions) that you actually remember the detail of so this won the cake until last Friday night.

That attack was the first one that ended me in hospital. The next one was last Friday night, 25 years later. But I actually have had these attacks for the life of my elder son and he is 36. But somewhere along the way the evidence of Crohn's disappeard from my colon and I went back to 5 year colonoscopies. The frequency of attacks diminished but it was hard to shake the one that came with my monthly period and this was well after stopping all meds. But I could avoid or delay them till the next morning by now if I lay completely still. I'm not saying I never had diarrheoa in between these attack because I always go several times in the morning but it became easy and over the years even they are mostly normal even if it all does not come out at once. The actual attacks more or less vanished after menopause which was a bit early in me because of other issues.

So for me, from the time of my divorce until now things have only gotten better and better. That was 1999. I like to think the frustration left when he left. He took no notice of my Crohn's ever since that night. I have managed it alone ever since and quite nicely I may add. So who says you need a good support network to aid recovery? Everyone. I say, not necessary but nice wherever you can grab it from. Nowdays I have a girlfriend who I support when I can and she supports me when she can...in the practical things. A ride to hospital, meals, etc But it usually has nothing to do with Crohn's. I went from being skinny to being fat. Now I have diabetes. I blame different medications along the way but mostly anti-depressants because I have lived with depression and anxiety on and off.

I'm not sure if this recent onslaught of gut problems means the return of Crohn's. I've never had anything like because now I can recognize that my stomach is becoming paralyzed preceding a bowel attack. Gastroparesis is often caused by diabetes but there are other causes and I do not rule out a Borrelia infection. Borrelia is the same genospecies that causes Lyme disease and Lyme disease is known to cause gut issues that mimic Crohn's. I have tested positive for Borrelia and the subspecies recently found in the Australian paralysis tick could very well cause Lyme-like illness.

In fact my Lyme Literate doctor reckons everyone who has Crohn's disease be checked for it. It can be treated with long-term antibiotics. I took them for a year including fortnightly IM injections. And after that Crohn's really did seem to become a thing of the past. I learned about constipation. I didn't even list Crohn's in my list of current illnesses. History of Crohn's is what I put. Doesn't that sound good?
 
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