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Crohn's Disease

Discussion in 'BBS Hangout' started by RunninRaven, Apr 7, 2004.

  1. RunninRaven

    RunninRaven Member
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    I'm looking for information on Crohn's disease. Not the general stuff you can find from a simple web search. I've done that. I'm looking for more specific, detailed info that someone might have from personal experience with the disease, or from a relative or loved one that might have had the disease. Any info that could be provided would be greatly appreciated. Anyone here have the disease?
     
  2. DallasThomas

    DallasThomas Member

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    #2 DallasThomas, Apr 7, 2004
    Last edited: Apr 7, 2004
  3. Mr. Mooch

    Mr. Mooch Contributing Member

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    There's a couple people on this board that has it besides me. I'm currently "Crohn's-free" but I hate saying that. From what doctors have told me in the past year, there's only a 3 in 10 chance it will never come back.

    Anyway, what type of information specifically are you interested in? I'm glad to answer any questions you may have. I had a thread a year ago about my hospital experience and my history of the disease which I'll try to find.
     
  4. Mulder

    Mulder Member

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    My wife has UC. That and Crohn's are nasty, nasty stuff that I wouldn't wish on anyone.
     
  5. Master Baiter

    Master Baiter Member

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    PieEatinFattie's wife has that but he is here in Charlotte interviewing today with the company that I just started with. I'm sure that he will post something tonight or tomorrow as he knows quite a bit about the subject.
     
  6. mateo

    mateo Member

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    My neice has it, and she's spent a lot of the past couple years in the hospital.
     
  7. Supermac34

    Supermac34 President, Von Wafer Fan Club

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    Take one spoonful of Metamucil a day. Solves all problems with the bowels.
     
  8. Austin70

    Austin70 Member

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    My mother has it, no medicine helps. She can eat one thing one day, no prob, then the next day she eats it again she is in and out of the bathroom.
     
  9. Steve_Francis_rules

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    I have it, but it seems that compared to Mr. Mooch's story, my case was quite mild.
    I suffered through the symptoms of the disease every day for about a year until I was finally diagnosed. That was about five years ago, and with the help of medication, I've pretty much been fine since then.
     
  10. PieEatinFattie

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    My wife has it as MasterBaiter said and it is a big pain in the A**. I don't know how much it will help, but here is everything that I know about it.

    About two and a half years ago Mrs. Fattie started getting serious stomach pains. Now we didn't think much of it since she has already had her gallbladder removed and has a history of Kidney stones, but we went to the doc anyway. He ruled both of those out and started running test after test after test. After about six months of testing he told us that he thought she might have Crohn's. When I asked how he could find out, he told us the only way to know for sure was to rule everything else out. She was literally tested for every conceivable disease in the intestinal track. This took almost a year to rule everything out. Now that we know she has Crohn's, we need to figure out how to treat it. Notice I said treat and not cure. Problem is that finding the treatment is as bad as finding out if she had it in the first place. Now we are trying medication after medication to try and find what will work for her. About a month ago she had some kind of attack from the Crohn's that pinched her lower intestine. All they could do was stop feeding her orally and give her meds for the pain until they un-pinched themselves. This took about two weeks. Obviously we have not found the right meds for her yet, but we're still trying. From what I understand, the worst that it will ever get is that if we don't find a medicine that works for her, she will eventually start having to have surgeries to remove pieces of her intestines and if enough is removed she will have to have a colostomy bag.

    Basically, she was having the runs all the time until the doc started these different medications. So it has gotten better but it isn't controlled yet. She has also lost alot of weight which is the only positive in her eyes.

    This is the extent of my knowledge on the subject. My condolences and prayers to anyone you know that has this disease.
     
  11. giddyup

    giddyup Member

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    My company markets a natural product which is great for gastro-intestinal problems. In fact, we are rolling out a new product in May for the equine industry; horses have a lot of gastro-intestinal problems.

    Anyone who wants more info can email me through the board.
     
  12. RunninRaven

    RunninRaven Member
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    Thanks for the input everyone. The reason I was asking is because my girlfriend's little 7 year old boy was just diagnosed with it. They told he had a "significant" case, but that it wouldn't require surgery. He is currently on three different medications, one a powerful antacid, one some type of steroids, and one that is relatively new and is also used on cancer patients (called 6MD or some weird acryonym). He has had terrible diarrhea and vomiting along with stomach pain for months now, and has lost something like 15 pounds (from a kid that started out at 54 lbs, it was a pretty dramatic weight loss).

    Since they finally diagnosed him (I know it is a difficult diagnosis to come up with, but I really think the hospital dragged their feet on this because they sent him home once without a diagnosis or any kind of medication and all he did was get worse for 3-4 days until we put him back in) and finally got him on medication, he has been like a different kid. He eats fine now (but only the diet they gave him which is low fat, low residue, low fiber). There was extensive ulcerage throughout his colon, and some in his small intestine and stomach. No one has said the word "surgery" yet, but that is my biggest fear up to this point since he is so young. For those of you that have this, how many surgeries have you had and how long did you have the disease before you started needing surgeries, if ever?
     
  13. Elienator

    Elienator Member

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    I've been diagnosed since about the age of 13 (I'm nearly 24 now). I fortunately have never had surgery. When I've been in remission, I rarely think about the disease. I had a recent flare up in December that landed me in the hospital for over a week and it really looked like they were going to remove part of my intestine. For a young person, I think one of the worst things about the disease is the side effects of medication (especially steroids). Being on high doses of steriods can dramatically affect the way you look and cause self-image problems.

    As for the hospital dragging their feet, it's probably not the case. Crohn's is a pretty tough disease to diagnose especially since the symptoms overlap with many other intestinal problems. It took nearly a year and lots of different therapies from when I started seeing doctors to when I was actually diagnosed with Crohn's.

    On the positive side, once the disease is under control, it is possible to live a normal life.
     
  14. Mr. Mooch

    Mr. Mooch Contributing Member

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    The medication you were referring is 6MP. I was on and off of it for parts of the last few years. I'm currently taking Azathiprone/Imuran (same thing essentially) as preventative medication to help prevent the Crohn's from ever coming back.

    Now when I was diagnosed in December of '98 (I had the symptoms for the previous 4 or 5 months I would say), it was truly an odd disorder. The only real symptoms I had were the IMMENSE pains (truly some of the worst pain I've ever experienced, second only to the hospital stay last July in which the doctor's ****ed up trying to fix my chest; another story), diarrhea, spiked fevers, and loss of appetite. Now the appetite thing was really a joke for me because I've always been skinny my entire life, the typical picky-eater and such. But man, I was 55 pounds, 12 years old, and about 4'8".

    I had a battery of tests done, some of which I remember quite vividly at Texas Children's and St. Luke's. I was forced to drink barium, sitting quite impatiently for hours trying not to vomit the stuff up. The worst was the 64-ounces of laxative they demanded I drink overnight in order to come in for a colonoscopy the next day. Ha, what a joke. No way in hell I would drink that ****, let alone have the, uhh, yeah. That never happened, but it was quite obvious I had Crohn's. What made my primary physician consider it to be Crohn's were the many ulcers/sores in my mouth.

    So my Crohn's doctor (Dr. Ferry was his name; don't know if he had retired on not since we left town) prescribed Pentasa and Prednizone, the harsh steroid. From the beginning there was talk over whether Prednizone would be helpful or not. It literally made me (my face especially) look 20 pounds overweight. It did increase my appetite. I was up to 75 pounds by May.

    I was on and off the drugs (stayed on Pentasa all the way through my 'mass exodus' last February) throughout my ordeal. My disease had been maintained adequately. Never any intense pain while on the drugs, but it lingered. If I was maybe an hour late for a dose that I would take usually around 3-4:30, my body would notice the absence and start with the pain. I had kidney stones, directly resulting from Crohn's, almost yearly since 2 or 3 years before I had Crohn's symptoms.

    The one thing about Crohn's is its origin is questionable. It could be genetically because I have heard of instances of a father having two children with Crohn's. Recently British scientist found that it might come from milk-borne bugs that occur when milk isn't pasteurized enough. Apparently milk is usually sterilized at around 140 degrees Fahrenheit (correct me if I'm wrong; I'm just remembering the pasteurization part from a research paper I did 2 years ago). If the milk was just ten degrees warmer (reaches Ultra-Pasteurization level), the bugs would be eradicated.

    The worst part of it all was just not being able to be 'normal'. I always wanted to play full contact sports and other activities, but my over-protective, ever-sheltering Jewish mother worried for me of course. Not being healthy was the biggest issue with me when I had the Crohn's; it was not getting better, not necessarily getting worse. It was a horrible lifestyle.

    But now that the damn Crohn's is gone I can finally achieve good health which I've been negligent, lazy, and still self-conscious enough not to go to the gym anymore. Too many hot women I'll have no chance with at the Student Recreation Center.

    But yeah, enough about my life story; if you or anyone else had any specific questions or needed advice or any tips I'll surely answer them. Oh, and I would've posted this long post a few days ago but I jus got back from a couple days in Athens. What a place! Great college town. I mean really, what a college town!!! I just don't know about the academics.

    Anyway, I wish the best of luck and good health to your girlfriend’s son as well as to anyone else who has it.
     
  15. RunninRaven

    RunninRaven Member
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    Well, what bothered me about the hospital was that they initially brought the little guy in for about 5 days when he got really bad vomiting and having diarrhea. They told us it was likely either an infection somewhere in the intestines, or some type of inflammatory bowel disease. I did some research at the time, and my g/f's little guy exhibited every SINGLE symptom of Crohn's. Every blood and stool test the hospital did to search for infection came back negative, but they continued to tell us it probably wasn't Crohn's, but probably an infection somewhere. When they ran out of tests to do, they said they would follow up and probably do a endoscopy and colonoscopy (this was on a thursday). They couldn't do it the next day because they didn't do scopes on the weekend (when did Friday during work hours become the weekend?).

    He goes home, does okay for a couple days and then has a bad flare up again and we are back in the hospital where we finally get a really good GI doctor that couldn't believe they ever let him leave the hospital and didn't know why they didn't do the scopes the friday after the day they let him out before. After looking at all the results and examining Blake (the little dude's name), the doctor came out and told us he thought it was probably Crohn's, something none of the other doctors would really even acknowledge as a genuine possibility. After the scopes, they were certain of it and they began medicating him. Since the medication (now that I have read some of the other posts, it is indeed 6MP, the steroids he is on is Pregnizone and he is also on Prevacid) he has done great...so you can see where his mother and I would be seriously irritated that they didn't move a little faster on the scopes.
     
  16. Elienator

    Elienator Member

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    Raven,
    I can certainly see why you would be upset with the hospital, but one thing I've learned through spending a lot of time dealing with hospitals is that they move slowly. Not every doctor is an expert in every area of medicine. Even if someone exhibits a lot of symptoms of one disease, it doesn't mean they have it, especially when nearly every other GI disease has the same symptoms. Crohn's is the kind of disease where you usually do try to exhaust every other possibility before you start treating it. The medications given to keep it under control have some rather serious side-effects. No doctor wants to put a patient on something like prednisone unless there is no other choice (or that choice is surgery).

    I'm very glad to hear that your girlfriend's son is doing better and I think that you are a very good man because you cleary care about your girlfriend's son a lot. The advice I can give you in dealing with hospitals is that they are business, and doctors, nurses, and staff members are all normal people who in general have a pretty ****ty job. Procedures like colonoscopies, gi studies, etc all cost money and are governed by a limited amount of resources. Last time I was in the hospital, I came in on a Friday evening and had to wait all weekend without being able to eat or drink anything until I could get to radiology on monday. Over that weekend I only saw a GI doctor once. Additionally, things like colonoscopies can actually present a risk (bowel perforation being a large one for people with chron's), so it's not unusual for doctors to try to avoid doing them). I'm not saying this to suggest that you should not be upset with the slow turnaround in your case, but to let you know that hospitals have lots of sick people and only a limited amount of budget, equipment, and people to run that equipment. To get the best experience, the patient (or his parent/guardian) has to make sure they ask a lot of questions, do research into their condition, and push for things to move as quickly as possible. Even then, sometimes things will move slowly, but getting too upset by it is generally counter productive.

    Consider that Mr Mooch, PieEatenFattie, Steve_Francis_rules, myself and others have mentioned that it took on the order of 6 months to a year for diagnosis. I'm not sure how long your ordeal has been going on, but it sounds like Blake was fortunate in finding a good GI doctor. I'm not in any way trying to downplay what Blake (or you and his mother) have been going through, but reality is that hospitals move slowly. I'm very glad to hear that Blake is doing better and as you can see from the responses on this board, it usually is possible to lead a normal life once the disease is in remission. I'm also very glad to hear that Blake has at least two people who really care about him because that makes dealing with any problems much easier.
     
  17. RunninRaven

    RunninRaven Member
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    I do understand that Blake is lucky in his diagnosis came after only a couple months of discomfort and pain. My problem wasn't them wanting to do other tests before the scopes. They admitted the next step was to do the scope. At that time, they had no diagnosis and no real reason to believe that Blake would get any better. Instead of doing the scopes on the friday coming up next, they tell us they don't do them on weekends and send us home. When we got back in, all our doctors agreed that we should never have been sent home, even if they couldn't do the scopes sooner rather than later. As long as Blake was on his own, he wasn't keeping any food down, and wasn't getting hydrated enough...but they sent him home anyway. That's what pissed me off.
     
  18. Batman Jones

    Batman Jones Member

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    I have three very close friends with this disease. It sounds just horrible. One of them lost about two years to it, in and out of hospitals. Anyone who has it has my deepest sympathy.
     
  19. Elienator

    Elienator Member

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    Thanks for the clarification. I thought you were mostly upset over the scheduling of the scope, not that Blake was discharged while he should have been under medical care. If he couldn't keep down food or stay hydrated, then I can easily see why you would be upset that he was discharged.
     
  20. RunninRaven

    RunninRaven Member
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    Another question for those that have it. What kind of diet do you eat? Do you regulate it heavily, or lightly or at all? As of right now, they have Blake on low residue, low fat, low fiber diet. It means all of his favorite foods he can no longer have (Mac and cheese, chocolate, chips, sausage...). We do what we can to make substitutes that he will like and fit his diet, but it isn't easy.
     

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