Why not surgery?

I had a consultation with a colorectal surgeon this week. I have ~20 cm stricture in my TI. He confirmed I'm a candidate for surgery. I've never had an obstruction, just a lot of pain, bloating, etc. So, why not surgery? Why does everyone avoid surgery like the plague? Why not just cut out the strictured area in my terminal ileum and move on? Why not try for some good years where I can eat what I want, travel, work and play and not live so tentatively? I know the disease could rear it's ugly head again in weeks, months, years or never. Is that the reason everyone tries to avoid surgery? Because it's risky and no guarantee of being disease free for any significant period of time? What about the risk of the medications? Humira's literature indicates there's a 4x (400%) increased risk of lymphoma. I'm taking Humira and still feel crappy. I've been on Pentasa, Imuran, Entocort and now Humira the past 2-3 years and surgery is now looking to me like the best option available. Am I crazy to consider surgery when I haven't experienced an obstruction? Why not schedule surgery at a time that's relatively convenient? So I ask, why not surgery?

If you feel like it's for you I say go for it, but don't assume that you'll be able to just eat anything and that life will be back to the way it was before CD, sure it could very well be great, and be that way for a long time but there are risks to everything so you have to weigh them out and make the decision for yourself, it's the same as no one can tell you not to get surgery or that you should get surgery, ultimately the choice is yours only.

And although CD is very individualistic, the chances of re-occurance is higher after surgery, it's just the nature of the beast, but you're right, you could very well have a much better life for a period of time if you go ahead and get it done.

Good luck with your decision :)

I had two resections in a 5 month period. I didn't even know I had CD before my first resection. I thought I was having my appendix out. Woke up in horrible pain to find out that I was missing part of my intestines. My surgeon is very against doing surgery on Crohn's patients because of the high recurrence of the disease, especially after surgery. That being said, I didn't have much choice when I had the second surgery because of a twisted intestine, abcess, fistula and obstruction. I sure thought I would have a period of long remission after my first surgery. I wasn't careful about what I ate at all. I don't know if that contributed to my second surgery. I have been much more careful the second time around. I missed over 12 weeks of work last year alone because of the two surgeries, so I'm doing everything I can do avoid having it again anytime soon.

If you feel that surgery is the best option for you, then do it. I know, for me, the second surgery I was looking forward to it because I was in an extreme amount of pain. I've felt pretty good for the last several months since my surgery. I'm still having symptoms of CD, but I'm not having the extreme pain I was before surgery.

My brother had a resection of his TI 5 years ago and he has been urging me to have surgery for years. If I knew I would do as well as he did, I'd go for it. He jumped right into surgery after only being on Pentasa for about 6 months. He didn't want to try the aggressive medications. He was concerned that he could get colon cancer because he couldn't eat any of the foods that help prevent cancer, like all the veggies. He wanted to schedule surgery at a time convenient for him and not risk an obstruction and perhaps surgical emergency. He has been feeling wonderful for 5 years. At a recent colonoscopy, he said there was inflammation at the anastamosis site, but that he is on Pentasa for that and feels fine. He doesn't understand why I'm taking the heavy duty meds when I can get the strictured area cut out, like he did. (He's a surgeon, so that may explain his philosophy about treatment). Then I read these posts and see that people suffer through obstructions and still don't jump into surgery. I haven't even needed to go to the ER.

Thanks for your responses. Inflamed, can you tell me what medications you're on that have helped you avoid surgery?

pb4 - I'm glad you reminded me about the possibility that I wouldn't be able to eat everything I wanted. I've been fantasizing about my post-op menu for months!

Teddybearweiser - What are the other medications you're referring to? Perhaps Remicade? My doctor has suggested Remicade. However, I've come to believe that my stricture is due to scar tissue (since it hasn't seemed to respond to imuran or humira) rather than inflammation. I don't know of any drug that will relieve the scar tissue.

Crohns07 - that's such a bummer that you needed a second surgery so quickly. Were you on any meds after the first surgery? I hope your second surgery gives you long-term relief. The fear that the crohn's could return soon after surgery is the main reason I haven't scheduled surgery already. Another reason is the risk of developing adhesions, as Yogaprof pointed out. I just defended a lawsuit against a physician for allegedly causing a perforation of the TI in a patient with extensive adhesions who needed a salingo-oophorectomy (removal of tube and ovary). She was having pain because of her adhesions and when the doctor lysed the adhesions away from the tube and ovary, he may have caused damage to the outermost layer of the TI, which perforated some time post-op resulting in a 2 month hospitalization, 9 additional surgeries... The patient had suffered with adhesions for years and wanted relief, and ended up in worse shape. So adhesions are another thing to worry about!

So, I'll probably end up mired in indecision until I end up needing emergency surgery, which is what I'm trying to avoid, which takes me back to my original question!!!

6mp worked for me, but the results are different for all. I've been luckier than a lot of people.

I also have a stricture which is scar tissue and thus not going anywhere no matter what medications I take.  I have resisted surgery for a while but I am planning to have a resection or strictureplasty in a couple months.  I feel great right now but when I do have a flare, and there is inflammation on top of the scar tissue, then the stricture is very annoying and I have to be very careful about what I eat (smooth/soft foods, and very tiny meals).  I think surgery to remove a cold stricture is very different from surgery to remove the actively diseased part of the bowel.  We aren't hoping the surgery will "cure" us, we are just preventing serious physical complications like obstruction or perforation.  I'd rather do the surgery when I'm feeling well and can recover nicely than in an emergency situation when I'm weak and sick to begin with.

Only have a colorectal surgeon operate on you!!!!!!!!

Hi Ski bum,
Please make sure the surgeon you see is experienced with CD! I was initially referred to a general surgeon who turns out was clueless about CD as well as how we don't heal like normal folks. I really suffered! Three incisions that weren't necessary! My current colo-rectal surgeon really knows CD and I trust that he will perform surgeries with CD in mind. He consults with my GI Dr. about treatment and drugs post-op. In fact, it was he who suggested to my GI that my condition needed Remicade. My GI agreed but unfortunately my body disagreed with 2 reactions. But thats another story. ;-) Bottom line -- I'd ask all the surgeons about their experience with CD. I feel for you! Such a tough decision!

i recently a my ti removed before that i never went to er for obstructions etc,i was in alot of pain etc,the surgery wasn't easy.but i defintly think it was worth it.if the drugs arent working why wait for things to get worse? my partners mum was sick for ages and the doctors thought she only had ibs in the end she need a colectomy.After surgery you need to be careful still bout wat you eat,if you haf a temp bag you dnt need to worry to much,just make sure you chew well and dnt eat the things they tell you not to eat.I had  a temp bag for 2 months and it was ok.If your in pain etc like i was surgery is good i dnt get pain like i use too that was horrible,anyway good luck

I went through this last year. I met with the surgeon, we talked about the procedure, and I was ready to sign on the dotted line when I heard about Humira. My GI hadn't had a patient on it yet - it was still not approved - and I figured I had come this long without eating, surely I could go another month to give it a try. Thankfully, for me it worked.

Surgery was last resort for me because:
- the recuperation period. I work FT, am young and new in my career, and didn't want to be out that long
- the money. We are still paying off Remicade infusions from 3 years ago. Financially we are barely making it by.
- there is only so much to cut, and I knew it would come back. At 28 years old, did I want to start cutting already?
- the complications of surgery and the issues that we'd have to address afterwards. Like B12.
- knowing that I could go through all that pain and money and still be right back in the same spot 6 months later.

It WAS my only option if Humira didn't work. Nothing else was working and I had already spent 2 weeks in the hospital and dropped 75 pounds. I'm thankful I didn't have to go there - yet.

I would seek out every other option first and then I'd have no qualms about surgery. I couldn't live with the pain. With the liquid only diet. With the low energy. It wasn't a life.

Hi Ski Bum,

My general surgeon thought he knew what was wrong with me but it turns out he didn't know a fistula when he encountered it. So long story short -- he got a "learning experience" but I got 3 incisions that I didn't need. I was quite ill (high fever and very bad abcess) when he said "I don't know what else I can do for you". He later told me he was going to pass me off to a colorectal surgeon, but I beat him to it and saw one myself. My colorectal surgeon knows CD and he fixed the problem ASAP. He knew exactly what was what. Actually when I went to the ER for my recent abcess, they said they ddin't want to touch me -- they said only a specialist who knows CD should treat me. I agree!

I question what your general surgeon said about Humira post-surgery. Does he understand that CD frequently attacks surgery sites?? Seems to me this is even more reason to take it!

FallColors - the colorectal surgeon told me he would want me on Pentasa after the surgery. He said that once he removes the diseased area of the TI, he thinks Humira would be too aggressive a medication to be on. He did mention that the CD could return at the anastomosis site (or elsewhere), but thought Pentasa would help to prevent that. I'm going to research to see if there's any literature on the different recurrence rates of active disease post-resection on patients who've taken Pentasa vs. imuran or 6MP vs Remicade or Humira. I wish I could just trust my doctor, but I've already received two different responses. GI: Humira; colorectal surgeon: Pentasa.

Gail - I'm glad to hear you're feeling better after your surgery. Pain all the time, at night anyway, is absolutely no fun. I'm laying in bed right now, listening to my husband snore, and not able to sleep because of the pain. It's hard to function on 3-4 hours of sleep/night and I'm really tired of it. I am getting some high scores in text twist and bubbles while I pass the night away. (o;