Why not just have surgery and be done with it?

You did clarify that it wasnt your large bowel involved but what I was trying to say was that when I had my last resection done the disease went wild throughout my entire large bowel within 6 weeks after surgery so therefore leaving me with an ileostomy after all avenues were exhausted. But if I could have avoided all my surgeries I would have for sure, as this disease shows no mercy. Although everyones disease is different, it has'nt let up on me for several years and now trying to come to terms with my ileostomy. Hope u consider every option available and make the best decision that suits u. Best of luck

Hi Mr. Denial. My brother is also a surgeon and also has CD. He opted for surgery (ileocolectomy) after less than a year of his diagnosis and urged me to follow the same route as it worked so well for him. I had the surgery ~1 1/2 years ago. I now don't have the pain I used to have, but did get some new problems - i.e., g-a-s, intolerance to some foods I could eat before the surgery (eggs, cereal, milk...). I know I was headed in the direction of surgery - Pentasa, Entocort, Azathioprine and then Humira weren't helping. I could have postponed the surgery for weeks, months or perhaps years, but wanted to improve my quality of life. My brother's CD came back ~6 years after his surgery and now he's on Remicade and still feels well. I'm glad I elected to have the surgery. Good luck with your decision. SB

well, i have an update. had several flares-nausua, vommitting, cant/dont want to east/passing mucho mucus and and yuck in bowel movements- since last post. Dr did CT scan with barium. My 2 spots have not gotten any better and look like scar tissue. the remicade is not working. Dr put me on soft/liquid diet to keep me from getting a blockage until we can have surgery scheduled. he said this is the next step for me as i have run out of medication options to reduce the problem.

I feel that the title of this post is very misleading. We are all aware that having surgery does not rid ourselves of this terrible plague. I remember when my doctor gave me the choice, and he assured me my symptoms would return within 7 years. Not to mention I would have to take Vitamin B-12 shots my entire life amongst other issues the surgery would cause.

Surgery should be the last resort in my mind. As others have said, once you take out intestine you cannot return it. Obviously surgery is unavoidable in some cases, it depends on your scenario. But, just be aware that symptoms will eventually return, and in some cases worse than before.

I am the last one to suggest surgery. What they take out they can't put back in. BUT - with your record I think you are a WONDERFUL candidate for surgery!!!

Look at your history w/this DD (danged disease). 30 year Dx and only recently having these severe symptoms. Crohn's tends to follow its original path. You've obviously had a pretty mild form of it. In addition the recurrences are usually less severe as we age. And you sure as the devil want to get off that prednisone as soon as possible. Men get osteoporosis too and pred will cause osteoporosis quickly. Especially at your age.

We have 20 feet of small intestine. Unfortunately, it is the last 3 feet of the small intestine, the terminal ileum that does most of the bile salts removal and bile salts irritate the colon causing diarrhea. However, many who have donated a good portion of that TI, ileocecal valve area avoid or control any resulting diarrhea w/Questran or similar product.

Since I do hate to donate anything to the pathologist's plate - and I'm a curious, nosey ole broad - I'd probably be inclined to try that double balloon endoscopy. They "might" be able to do "just" a balloon dilation of your strictured areas. I wouldn't count on it given you've had the disease 30 years but ... since you HAVE had it 30 years and it is only now getting to the point of considering surgery ... and they do mark the stricture areas during the DBE.

On the other hand, they get the absolute best look at the entire intestine during surgery. You do want a surgeon who handles the intestine and other organs GENTLY as gentle handling makes the recovery so very much easier and less painful!!!

I was Dx'd in early 1976 after symptoms since mid 1975. But I couldn't handle the only med they offered me at the time - asulfadine - and didn't have enough sense to go back to where I was Dx'd to see what else they had to offer. By early 1978 I ended up having an emergency resection to obstruction and (the locals said) perforation. I was fortunate, in that untypically my Crohn's first struck at the mid-ileum (actually from the surgery description it sounds more like it was the proximal end of the TI rather than the usual distal end and ICV). They removed 18" of the small intestine at that area and - I WAS BLESSED W/A 20 YEAR REMISSION - w/o medications. (Of course, knowing what I know now I would have explored what other meds might have been available to me as maintenance meds after the surgery).

When my Crohn's did finally return in 1978, the symptoms were very mild, but I recognized them and headed to a gastro. I've been in full remission and/or symptomatic remission these last 11 years w/Pentasa and Imuran. I do have a high grade partial obstruction at the old resection site w/quite a bit of dilation above the obstruction - and unfortunately some scar tissue nearer to the ICV but they think that I'm a good candidate for balloon dilation in that area since it is still some distance from the ICV. Since I'm not having any symptoms and am doing well w/no problems at all w/the Pentasa and Imuran - and have another issue they would like to handle surgically as well, another issue we've been monitoring that is also causing no symptoms, I'm not interested in surgery - yet. But I've discussed the situation w/my family doctor, local gastro and my Mayo gastro (that's where I was Dx'd in '76 and had the resection in '78) and they all know my wishes and intentions and are respecting my decisions in this regard.

When any truly bothersome symptoms start I'm on my way to Mayo for surgery!!! I even have the Mayo surgeons lined up that I want to do my surgeries. A WONDERFUL gyn/onco for the two ovaries and a good colorectal for the intestine.

I'd ask my gastro for further clarification on what there is to gain by doing the CBE and make my decision about the CBE after that. The surgery ... I'd say "go for it". You are an excellent candidate for it w/a long remisssion after.

Hi denial...wish I used that for my screen as it fits me too. I had surgery involuntarily in 1990 (I ruptured and was then dx'd as CD). I have to say that I had many great years post surgery, but that was with maintenace meds and a VERY strict diet the first 3 years post surgery. I just wanted to mention that although I had about 10-12 years post surgery that were great...it came back with a vengeance after that. My TI was removed, but now I have nasty symptoms after the TI repair down to my anus area.
I don't know if I would have the symptoms if I did not have to have the TI removed, I jsut wanted to give you more perspective. Such a personal decision....good luck and let us know how you do.