So nice to see a board like this, so here's my unique story (trust me on this one). I hope it helps.
I was 18 when I was diagnosed with Ulcerative Colitis in 1986, just three days before my graduation from high school. Early symptoms were unexplained weight loss, followed by bloody loose stools which prompted the doctor visit. My UC stared in my rectum and then progress throughout the colon. At that time, many drugs now did not exist so I just took Prednisone and Azuldafine (and a folic acid supplement) 3 months after my diagnosis I was hospitalized for 2 weeks on bowel rest, and went home. Improved somewhat over next year- no fever, reduced paid, but never really regained what I would call a "functional level" of continence, nor did I gain much weight back (I dropped from 150 to 130, and got back to 140 lbs). After a year of battling, my fever returned, inflammation got worse and rehospitalized. I was not able to improve, and had my colon and rectum removed at UCSF in September of 1987, with the construction of a j-pouch from my ileum which was reconnected. Disappointing certainly, but at that time I was very happy to get on with my life- I was so tired of being sick, incontinent and suffering from the tremendous side effects the Prednisone beat me with.
Next phase- over the next 3.5 years I had numerous surgeries (14 total over a 3.5 year span) to fix my internal pouch. I was getting chronic pouchitis, fissures, fistulas, you name it I probably had it. My surgeon and I even attempted to start over from scratch on three separate occasions, one of which was with a Koch pouch, but all of them kept having problems. Ultimately I needed a permanent ileostomy, and I had that when I was around 23 years old (sorry, I lost track of exactly when). Major bummer, but I had no choice and as depressed as I was to go down this road, I was happy to look forward to a disease free life. Ulcerative colitis is cured through surgery, and I could not get sick again. I have gone over 20 years disease free.
Now the fun part- I was just diagnosed with Crohn's disease in my ileum, located at the base just inside my stoma- the part most often assoicated with Crohn's disease. I had a history of a partial bowel obstructions, but not many and my last one was many years ago, so when I was having my recent episode I chalked it up as just another bad food choice. However, my sed rate was too high, along with some other test I can't remember, so more tests were done. Ultimately a scope was used and diagnosis was made. Fortunately, there was none (or very little) scarring and I am now back on meds- taking Prednisone, Pentasa and will start Imuran at my next doctor appointment in two weeks. 6 months from now I will get scoped again to see how the healing is going. I am feeling ok, not in any pain and over the entire shock, or WTF moment since I thought I was cured.
Probably the best explanation to what all happened with me, is that I originally had a form of Crohn's disease called Crohn's colitis, which can often be indistinguishable from Ulcerative colitis. No matter what it was, when I was originally diagnosed in 1986 at 18 years old, every indication was ulcerative colitis. Even after my colectomy, the pathology report confirmed the ulcerative colitis diagnosis. Now over the years I had heard there will always be some doubt with a diagnosis of ulcerative colitis, and some doctors even asked me after my surgery, how much medicine I was taking. I wasn't taking any I didn't need to- I was healthy with no signs of disease anywhere. Adjusted to my life with an ileostomy and moved on. Now I understand why there will always be that doubt whenever someone has ulcerative colitis. Since Inflammatory Bowel Disease is still not fully understood, there will be doubt. The fascinating thing I feel, is that in my case the disease was a camelion. I am sure my case is rare and I don't mean to scare anyone who does have u.c.. However, one advice I wanted to pass on to those who are post surgery from u.c., is that if any kind of problem happens there always will be the possibility that Crohn's disease is really the culprit. My post surgery complications certainly seemed to be due to my disease and it's very unfortunate I had to go through a dozen surgeries over so many years before finally giving up. Why so long? Well, nobody ever brought up the possibility that I should consider a permanent ileostomy before. My doctor told me he never brought it up because he wanted ME to bring it up first. I understand that since an ileostomy is such a life changing decision. But realistically, nobody in their early twenties is going to say "yes, I want one", especially when you don't feel sick and your parents are dead set against it. Besides, all of my problems were easily fixable- it's just that they kept coming back. The final straw was when multiple problems came back just one month after my 12th surgery (most were for minor stuff, but they still count). At that point, nothing left to do, game over so to speak.
It's really too bad that ileostomy surgery is so frowned upon for young people. Now, I'm not saying it should be encouraged by any means, but sometimes the decision to have one is abundantly clear. What disappoints me is the whole "stigma" about it. Yes it sucked. However I was young but I knew that surgery meant I could finally get on with my life to the fullest. Being incontinent to the point where you are afraid to drive a car for fear of soiling your car seat, not gaining your wieght back, etc, is not how anybody should live. Especially when you are 19 years old and not getting any better. Life is too short to be forced to accept that.
As for my Crohn's, I am actually relieved to be diagnosed with this after already having the ileostomy done- incontinence is not an issue, and that's huge. I am getting better with my new medication, (back to gym only 1 week after getting home from hospital), and back to work. Perhaps I will someday get a bad relapse which creates other problems. But the way I see it, I had over 20 years of disease free remission before this flare up, and I seems the flare up is already getting better so I am hoping for another 20 years. I hope to be come down off Prednisone (taking 40mg/day) sometime this year. The one nice thing about having a relapse at my age now (44), is that my doctor expects any side effects from Prednisone to me much less than when I was 18-19. Teenage chemistry is much different than a 44 year old's and for that I am grateful.
I also wanted to pass along some advice for those currently sick with IBD. Remember that you are along for the ride, and hopefully the meds will work and make the ride better. Don't worry about all the scary stuff because you have no control over that- let your doctor worry about it, it's his job. Educating yourself is important as many doctors will certainly answer your questions but may not tell you where to go for answers. Places like this website are huge- if only this was available to me back in 1986! As for any diet related stuff- that's a tricky one because everyone is different. You will learn what you can and cannot eat. Dairy products gave me cramps, and any kind of ruffage gave me very bad cramps so I ate bland, soft food. Not much fun, but that's what my sickness was like. Yours may be much different. Eat what you can and feel you can tolerate. I love my protein shakes and I am an avid vegetable juicer- things I would do regardless of any health problem, mostly because I hate cooking. But even so, the foods I could tolerate were not fine all the time. Sometimes a perfectly good food caused me problems- because my illness was flaring up a bit. Sometimes you might see this coming because your bowel changes in firmness or smell, so it's always good to be cautious with your food choices when noticing any changes- may save you some cramps.
All the best,
Hobbes650
I was 18 when I was diagnosed with Ulcerative Colitis in 1986, just three days before my graduation from high school. Early symptoms were unexplained weight loss, followed by bloody loose stools which prompted the doctor visit. My UC stared in my rectum and then progress throughout the colon. At that time, many drugs now did not exist so I just took Prednisone and Azuldafine (and a folic acid supplement) 3 months after my diagnosis I was hospitalized for 2 weeks on bowel rest, and went home. Improved somewhat over next year- no fever, reduced paid, but never really regained what I would call a "functional level" of continence, nor did I gain much weight back (I dropped from 150 to 130, and got back to 140 lbs). After a year of battling, my fever returned, inflammation got worse and rehospitalized. I was not able to improve, and had my colon and rectum removed at UCSF in September of 1987, with the construction of a j-pouch from my ileum which was reconnected. Disappointing certainly, but at that time I was very happy to get on with my life- I was so tired of being sick, incontinent and suffering from the tremendous side effects the Prednisone beat me with.
Next phase- over the next 3.5 years I had numerous surgeries (14 total over a 3.5 year span) to fix my internal pouch. I was getting chronic pouchitis, fissures, fistulas, you name it I probably had it. My surgeon and I even attempted to start over from scratch on three separate occasions, one of which was with a Koch pouch, but all of them kept having problems. Ultimately I needed a permanent ileostomy, and I had that when I was around 23 years old (sorry, I lost track of exactly when). Major bummer, but I had no choice and as depressed as I was to go down this road, I was happy to look forward to a disease free life. Ulcerative colitis is cured through surgery, and I could not get sick again. I have gone over 20 years disease free.
Now the fun part- I was just diagnosed with Crohn's disease in my ileum, located at the base just inside my stoma- the part most often assoicated with Crohn's disease. I had a history of a partial bowel obstructions, but not many and my last one was many years ago, so when I was having my recent episode I chalked it up as just another bad food choice. However, my sed rate was too high, along with some other test I can't remember, so more tests were done. Ultimately a scope was used and diagnosis was made. Fortunately, there was none (or very little) scarring and I am now back on meds- taking Prednisone, Pentasa and will start Imuran at my next doctor appointment in two weeks. 6 months from now I will get scoped again to see how the healing is going. I am feeling ok, not in any pain and over the entire shock, or WTF moment since I thought I was cured.
Probably the best explanation to what all happened with me, is that I originally had a form of Crohn's disease called Crohn's colitis, which can often be indistinguishable from Ulcerative colitis. No matter what it was, when I was originally diagnosed in 1986 at 18 years old, every indication was ulcerative colitis. Even after my colectomy, the pathology report confirmed the ulcerative colitis diagnosis. Now over the years I had heard there will always be some doubt with a diagnosis of ulcerative colitis, and some doctors even asked me after my surgery, how much medicine I was taking. I wasn't taking any I didn't need to- I was healthy with no signs of disease anywhere. Adjusted to my life with an ileostomy and moved on. Now I understand why there will always be that doubt whenever someone has ulcerative colitis. Since Inflammatory Bowel Disease is still not fully understood, there will be doubt. The fascinating thing I feel, is that in my case the disease was a camelion. I am sure my case is rare and I don't mean to scare anyone who does have u.c.. However, one advice I wanted to pass on to those who are post surgery from u.c., is that if any kind of problem happens there always will be the possibility that Crohn's disease is really the culprit. My post surgery complications certainly seemed to be due to my disease and it's very unfortunate I had to go through a dozen surgeries over so many years before finally giving up. Why so long? Well, nobody ever brought up the possibility that I should consider a permanent ileostomy before. My doctor told me he never brought it up because he wanted ME to bring it up first. I understand that since an ileostomy is such a life changing decision. But realistically, nobody in their early twenties is going to say "yes, I want one", especially when you don't feel sick and your parents are dead set against it. Besides, all of my problems were easily fixable- it's just that they kept coming back. The final straw was when multiple problems came back just one month after my 12th surgery (most were for minor stuff, but they still count). At that point, nothing left to do, game over so to speak.
It's really too bad that ileostomy surgery is so frowned upon for young people. Now, I'm not saying it should be encouraged by any means, but sometimes the decision to have one is abundantly clear. What disappoints me is the whole "stigma" about it. Yes it sucked. However I was young but I knew that surgery meant I could finally get on with my life to the fullest. Being incontinent to the point where you are afraid to drive a car for fear of soiling your car seat, not gaining your wieght back, etc, is not how anybody should live. Especially when you are 19 years old and not getting any better. Life is too short to be forced to accept that.
As for my Crohn's, I am actually relieved to be diagnosed with this after already having the ileostomy done- incontinence is not an issue, and that's huge. I am getting better with my new medication, (back to gym only 1 week after getting home from hospital), and back to work. Perhaps I will someday get a bad relapse which creates other problems. But the way I see it, I had over 20 years of disease free remission before this flare up, and I seems the flare up is already getting better so I am hoping for another 20 years. I hope to be come down off Prednisone (taking 40mg/day) sometime this year. The one nice thing about having a relapse at my age now (44), is that my doctor expects any side effects from Prednisone to me much less than when I was 18-19. Teenage chemistry is much different than a 44 year old's and for that I am grateful.
I also wanted to pass along some advice for those currently sick with IBD. Remember that you are along for the ride, and hopefully the meds will work and make the ride better. Don't worry about all the scary stuff because you have no control over that- let your doctor worry about it, it's his job. Educating yourself is important as many doctors will certainly answer your questions but may not tell you where to go for answers. Places like this website are huge- if only this was available to me back in 1986! As for any diet related stuff- that's a tricky one because everyone is different. You will learn what you can and cannot eat. Dairy products gave me cramps, and any kind of ruffage gave me very bad cramps so I ate bland, soft food. Not much fun, but that's what my sickness was like. Yours may be much different. Eat what you can and feel you can tolerate. I love my protein shakes and I am an avid vegetable juicer- things I would do regardless of any health problem, mostly because I hate cooking.
But even so, the foods I could tolerate were not fine all the time. Sometimes a perfectly good food caused me problems- because my illness was flaring up a bit. Sometimes you might see this coming because your bowel changes in firmness or smell, so it's always good to be cautious with your food choices when noticing any changes- may save you some cramps. All the best,
Hobbes650
