Why not just have surgery and be done with it?

Your reasoning sounds pretty logical to me, especially if you don't think you're tolerating Humira well. I was somewhat in your situation 6 months ago, except you sound somewhat worse off and you've gone 30 years and I've only gone 10 and I'm only 33. So I went with the Humira, but if it stops working and I can't get back on the 6MP successfully I would have surgery.

Mike

I Agree!... all the drugs for CD have some nasty side-effects eventually. I've had the balloon test done. Not the greatest. Wish they would have offered some pain meds. I think that they are afraid because of your blockage to do a colonoscopy or a barrium test? ...maybe that's why they have chosen the balloon procedure..???
I ended up having 18 inches taken off in the area of the illieum. Side effects because of loosing those valves are urgency...I still take immodium daily. However, I don't have blockage at this time and am considered in remission.
What you would gain is, the infected blocked area would be gone..feverish feelings and nausea should subside. This could all be worth it.
I am a believer in quality not quanitiy. I want the time spent here to quality. I don't want to always be the one that stand aside...waits...I want to participate in as much as possible. So, I have had my surgery's with the hope of my quality being better. Good Luck to you!

It's entirely possible for disease to return, and quickly, after surgery.

Also, you have this disease for life and you don't want to go ripping your innards out without due cause, and end up 45 years later with short bowel syndrome or whatever.

Hey Mr Denial,

In my opinion I think all avenues should be exhausted before undergoing radical surgery, cause once your bowel is removed it cant be put back and as Ivy said crohns can come back anywhere in the digestive tract. I had a right hemicolectomy some years ago and the disease did'nt let up from that moment on it got so bad that I was rushed to hospital at least once every 3 months and really battled for my life. I know have had my entire colon removed and also my rectum removed and am living with an ileostomy. Its a procedure I had no say in really as It was a last resort for me as all drugs failed as well. Living with an ileostomy is obviously better than the alternative but I am still battling with it. So thats why I would say try everything u can first., Take care

I'm in the same spot as you ... i have 2 strictures but do not have large problems with it... when I say large, I mean I'm able to function (walk, do stuff etc), but can't do sports and I'm generally feeling weak and tired all the time (and am loosing apetite). I am not content with the state I'm and am considering surgery. If you are afraid of short colon syndrome I have a suggestion. Ask your surgeon if he can do a stricturoplasty instead of a resection. That way you loose a lot less of you'r colon and I've found a research paper that says that it's a much better procedure with a much lower recurrency rate in the next 5 years (4% instead of 28 % for a resection).

here's a link to the paper

https://www.cybersurgery.org/cybersurgery23/CyberPlanner/..%5CQA/Crohns_SOC.pdf

the paper is very new (march 2009.) and from Columbia University...

so, I have some exams that I need to take care of in the next two weeks and than I plan to go in the hospital for some exams and to see what my options are... hopefully a structuroplasty could do the trick :)

Mr. Denial--unfortunately, you cannot have surgery and 'be done with it' BUT it can give you a quality of life for a significant period of time. I am a 20+ year sufferer and did have surgery when originally diagnosed at 19/20 years old. I did have a wonderful (well, almost) 10 years after that, but it is true that even when we feel good Crohn's is doing it's thing, so I had many years of struggling at the 10-15 year mark. While I did take the surgery option, I also tried all of the drugs available to me at the time and when they failed, one by one, and there weren't any others to take, I did have a final proctocolectomy. Now, that is drastic, but for the preceding 10 years I did not have small bowel involvement so I felt comfortable having the diseased colon/rectum removed.

I will say that that was the correct decision FOR ME...I had a definitive Crohn's diagnosis and don't mind my permanent ostomy because I have an AMAZING quality of LIFE!

Moral to my story: Take all the information (have your docs do all the necessary tests) and make a decision that you can live with whether it's medication or surgery...just because one person has a difficult time with a procedure or drug doesn't mean your experience will be the same. But at the same time surgery isn't a cure all for Crohn's. Good Luck:)

Thank you all for the thoughtful responses! One thing you've taught me is that there are no definitive answers to this complex and confusing disease. I just got off the phone with my GI and she suggested a consult with a surgeon who has been "standing by" and is familiar with my case. She doesn't disagree that elective surgery might be a viable option. Ultimately, I expect that it will still be up to me to make the final decision so I'll keep reading your posts which offer so much valuable personal experience. Thanks again!

dave

Hi Dave (Mr Denial),

I think you need to clarify just what kind of surgery you're talking about. Several posters above seem to have assumed that you're talking about removing the colon, which might not be the case.

I've had 3 bowel resections - all of them improved my quality of life greatly. Unfortunately, scaring of the intestine has been a recurring theme for me, which is why I've had to have 3 surgeries (an average of one every 7 years) to remove an obstruction. All 3 surgeries were at the terminal ileum (the juncture of the large and small intestine). That is the spot that usually causes the most trouble for Crohnies, but that's not the case for everybody.

Small bowel surgery is not such a big deal. It's not fun, but it usually provides considerable relief and few long-term side effects. The small bowel is about 6 meters in length, so if you lose half a meter, you aren't going to notice a big difference. You might lose the ileocecal valve in the process, and that could cause a tendency towards sudden diarrhea, but it's still not a life-changing event - I've lived without my ileocecal valve for many years with no great consequences. I don't have any regrets about my surgeries - the alternative was constant pain and living on a liquid diet, and possibly dying (my last surgery was actually an emergency - complete blockage that wouldn't resolve).

But my understanding is that getting the colon (large bowel) removed can indeed be more than a little inconvenient. Pretty much constant diarrhea, and possibly living with an ileostomy, etc. I'm fortunate that my large intestine hasn't caused me any trouble, and I hope that's the same for you. Anyway, my point is, please clarify the location of the blockage and the proposed surgery if you want more info from us as to the expected result. Of course, most of us aren't doctors, but many of us have had resections and can give you some idea about how it has worked out for us.

best regards,
Robert

If your brother were a Crohn's specialist, then he would know that no Crohn's-related surgery can ensure that you would simply "be done with it." It's just not that easy. Even if you have surgery, you will still need maintenance meds...Crohn's can re-appear anywhere, even right after the surgery.   

My daughter was sent to ER twice and hospitalized with an obstruction three years ago, and the SBFT and Cat Scan showed a lengthy stricture...it was so tight that her GI could not enter the TI during the colonoscopy. At that time, a Mt. Sinai doc suggested surgery might be the best option. All the GIs during the past three years seemed to have assumed the stricture was permanent scar tissue.

They were wrong. A SBFT last Nov showed no stricture. A colonoscopy last March confirmed no stricture. Am very glad we decided to consider surgery as only a "last resort" option.

Seems the docs don't yet know just how much of your stricture is or isn't scar tissue. Also, you just started Humira. Why not give the meds a little longer to work?  Flagyl and Pentasa are not that effective, so you have not exhausted the "big guns" of meds available.

How long have you been on the SCD?

I fully intend to keep all of my intestines for as long as I possibly can. The disease does seem to return, and I've heard of it happening all quite quickly in some. The only way I'd do is if I had NO other option.

As in I've tried everything else, and my quality of life is bad. Or if I don't get it out it could become an emergency situation fast.

But if it's scar tissue rather than inflammation, nothing is going to cure it. The only solution is to cut it out, or live on a soft/liquid diet for the rest of your life.

Not Mr. Denial, but he said he had the pill cam done and it got stuck and landed him in the hospital.