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Date Joined May 2008
Total Posts : 21
Posted 5/1/2008 3:17 AM (GMT -6)
While doctor is trying to ascertain cronicity (by doing 2nd colonoscopy in less than a year as the first one showed none), I am trying to find out about
how to avoid resection of terminal illeum by diet. I presented with "obstruction" vomiting and D one day last June after a huge salad and 20 oz diet coke after several months of stomach aches (which I had atrributed to stress and crazy diet due to both bad and good events, just too many of them). Long story short, I am 56, never lost weight, never had D except that one time and did not fit profile. Cutting to chase, wondering if anyone knows about
how to stay healthy (and avoid surgery) on the specific carbohydrate diet as so far I have been bargaining with doctors by eating less than 3 grams of fibre (soluable daily). As I told the doctor, my only symptoms seemed to be that before I ate no fibre, it felt like I had had my stomach stapled. Again, never D. That is when they did barium follow through and found very scarred stricture in terminal illeum.
If I take the Pentassa (4 times daily) EXACTLY four hours apart and eat small meals (right now mostly protein and now not rice...) I feel pretty good. It took 6 days to have BM after recent colonoscopy though and I worry about
the consequences of that as much as surgery, but do not want surgery. The Promethesus tests were all normal except the CRB1 which was HIGH. I am wondering then where did that 24cm scarred stricture come from, and if the endocort did not help it heal, could diet reduce inflammation. I do not want to do immunosuppresants unless
I have to have the surgery. Since it is in the terminal illeum (typical of crohn's) and so scarred I was told by a doctor that it would probably just keep coming back and needing to be resected. So, as you see, I feel I am in between a rock and a hard place. I am lucky that this has happenned without any diasterous events so far and would like to keep it that way. However, I need more information from others with information about
fibrostenosing crohn's, scarring strictures due to bacteria (?) or other toxins including iboprofin (which I used to take a lot) and any suggestions of ways to stave off that surgery (or at least until we find out what is really the matter). THANKS. Sorry so long. For me this is short. Good Morning / Good Night.
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Date Joined Oct 2006
Total Posts : 367
Posted 5/1/2008 6:35 AM (GMT -6)
Hi nightowl--I too presented with little symptoms. It's hard to figrue out how my body turned against me without my knowing it! I know you want to avoid surgery, but I want you to ask yourself something--am I satisfied with my quality of life and quality of care? If the answer is not a resounding "yes!," then it is time to think seriously about
a second opinion and to give surgery a second chance.
Keep us posted on how you are doing and what you decide. I also answered your other post and said basically the same thing. Good luck in finding answers.
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Date Joined Jul 2007
Total Posts : 239
Posted 5/1/2008 7:41 AM (GMT -6)
I was alot like you. I had very minor symtoms for years, until I ended up in the er with such pain and I had scarring in the terminal ileum. I was on medication and diet therapy for 9 months. Pentasa, entocort, Imuran. Vicodin for pain. Never had much d, though. I went to the doctor one day because the pain was getting worse. He sent me for a CT scan, said he would see me in 6 weeks and we would talk about
Remicade. I was back in his office right after the CT scan, the radiologist had called him, and I was having surgery 8 days later. The scarring was inflamed, nothing was helping, and almost nothing was getting through. The surgery and recovery really weren't that bad (it was
open surgery, tried laparascopic but I was too much of a mess, they find a fistula they got rid of too that hadn't been seen on the scan) and I am much better after the surgery. Imuran for maintenance and my last scope showed I have no active disease. I do have pain sometimes, cramping, and d more now than before, so we're watching things, but surgery definitely was worth the trouble!
diagnosed 11/06, solving the mystery of years of on/off abdominal pain. No more "it's just a virus". 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bowel resection 9/07. Doc says no active disease, but flare-ups anyway. 11 year old son with IBS-C, on Bentyl.
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Date Joined Feb 2007
Total Posts : 1010
Posted 5/1/2008 7:54 AM (GMT -6)
Many people diagnosed with crohn's, especially stricturing crohn's, present with a history of constipation not diarrhea. It sounds like you are in the bargaining phase of coming to terms with your illness. The prometheus tests are incredibly effective -- as a source of revenue for the lab that owns the proprietol rights to it. They are no where near being conclusive, however. If it's positive there's a pretty good chance you have crohn's. If it is negative, it is of no diagnostic value. Many people with crohn's do not test positive.
Crohn's presents in many different forms and that's why it can be so difficult to diagnose. For some, and I include myself, the disease does not present as a fulminating pan-colitis event with bloody diarrhea, excessive weight loss or any of the other manifestations associated with a full-scale assault on the body. Rather it follows a much more subtle, incidious course. While it is simmering away in a particular section of bowel (usually terminal ileum) the transient symptoms associated with the inflammation can be completely missed as we go about
our busy lives. It isn't until it has been active for years, with multiple episodes of healing, that the cumulative damage from scarring and current inflammation results in an episode of obstruction. Or maybe a significant life stress occurs and you're hit with a bout of intractable diarrhea. The point being that it seemingly comes out of no where.
That's what happened to me 30 years ago just five months after the death of my second child. At the time I believed I got sick because of the stress, but in hindsight I realized that there had been little warnings for several years prior to that first nasty bout of illness. I suspect the stress of losing a child suppressed my body's natural defences and allowed the inflammation to flare out of control, but it had been there bubbling away for years.
Maybe in looking back you might remember a time when you had some odd pain and urgency after eating popcorn at the theatre, or an episode of vomiting and pain after a family barbecue, but at the time you just passed it off as a tummy bug. Maybe not. The important thing now is to focus on what next.
You say you want to avoid surgery. I can empathize with that. With crohn's, especially stricturing crohn's you do want to manage your disease medically as long as possible because it will come back. But there does come a time when surgery offers the best option. Is it possible for you to modify your goal slightly? Maybe your goal could be to do everything possible to reduce the need for surgery, while maintaining an acceptable quality of life. If you keep assessing your efforts to avoid surgery against your quality of life, and remain rooted in your reality, you will know when the balance tips towards the need for surgery.
A person can suffer for a long, long time with this disease before surgery is a matter of life and death. So if your goal is just to avoid surgery, you can suffer through incredible misery for a long time through force of will. I know. I've done that. But is that necessarily the best decision? For you? For your family?
Keep asking questions. Continue to be an active partner in this unwelcomed relationship you now must forge with this disease. But keep all your options on the table.
30+ years living with Crohn's.
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Date Joined May 2008
Total Posts : 21
Posted 5/1/2008 7:04 PM (GMT -6)
You all are so wonderful. Just arrived home and off to eat some chicken soup. Had about
an hour of sleep trying to figure out if my query went out. I was so excited and touched to see people responding. Thank you! It makes me feel good that I am not the only one who didn't present l0 lbs lighter, as a child, teen or 70 year old and without D. (because when I am not bargaining away surgery I am worried that the stricture is cancer--of course--what else could it be?) So, until I get the colonoscopy results, it was good to hear from you each and my fears are assuaged for tonight that others presented like me and are here to tell the tale.
Right now I am working to strengthen my core (back and stomach muscles) as I tore a bulging disc in the fall and messed up my right arm rotator cuff...So, from what I read, I will need those muscles in good order when the time comes for the surgery. Right you are, I am in the bargaining stage. However, hearing that you did the same method of treatment and it all leads eventually to one path...Well, I am just trying to put that off without compromising my health further.
Seeing as I can work, have never had D and quality of life is good (except that I worry about
cancer on one side of the scale and repeated surgeries on the other (( never had surgery before )) when I take the Pentassa right on schedule, I cannot complain.
I did have six months before the obstruction when life was a rollercoaster of good and bad things (I am sorry for your loss, unimaginable, and makes having my son go off to college seem trivial) However, it was a year of great highs and great lows and all too close to one another. It was not out of the blue as you said. I am grateful not to be caring for anyone but myself today and grateful for good insurance. My husband and mom are on my case that it is not true, all my fault and/or don't want to hear about
it. So, thank you so much for "listening". I will let you all know what the colon. results are, and again, it is SO good not to do this alone. 30 years?!!! You give me hope and you all give me inspiration! this nightowl is off to dinner and bed. Thanks to you all I will be able to sleep soundly (finally).
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