Surgery Dilemma

[AmandaNG]

I was diagnosed with Crohn's at age 17, and I'm now 26. I have been lucky enough to avoid surgery so far. I had a bad flare that began last October. I went back on Humira, which I had stopped taking because of severe sinus infections, and started taking Entocort.

I wound up in the hospital at the end of November. A small bowel follow through showed 2-3 cm of "threadlike" narrowing at the end of my terminal ileum, which is the area that always narrows when I flare. The first night in the hospital, I saw one of my GI's partners, who recommended IV Prednisone and a surgery consult. My GI, however, wanted to avoid surgery.

I was on Prednisone for 6 weeks and went back to the hospital in January with severe abdominal pain. My GI did a colonoscopy and said that I appeared to be in remission. He thought my symptoms were now more IBS-related.

I have been taking Elavil for the IBS but continue to have symptoms of abdominal pain and diarrhea followed by several days of constipation. I had another small bowel follow through last week that showed "slight improvement" but continued narrowing. A stool sample and bloodwork came back negative for inflammation, which to me means that the narrowed area must be scarring. My Crohn's specialist is on maternity leave, but her PA recommended that I see a surgeon. However, my regular GI does not think I need surgery. I know 2-3 cm of narrowing is a comparatively small area. Is it worth pursuing surgery for this? I am on medical leave from work because of the pain, and I just don't know what else to do!

 

[David]

If your stricture is that narrow and due to scarring and you're in a lot of pain due to it, I think surgery would be a pretty strong option. However, keep in mind I'm no doctor so I would strongly suggest getting a second opinion from another GI AND from a surgeon who specializes in that area. If they are able to do the surgery while keeping your ileocecal valve intact (that's the valve that separates the small intestine from large) then I'd consider it even more. If they feel they'd have to remove that valve, that would make me think even harder as it's pretty darn important. And if they can get away with only removing a couple inches of your TI, well, you have plenty more though you'd definitely want to keep an eye on various vitamin levels.

 

[DustyKat]

If the stricture is at the end of your terminal ileum then it will be difficult to remove without preforming a hemicolectomy so the valve would have to go. The other thing they may be able to perform is a strictureplasty. No bowel is removed but rather the narrowed area of bowel is opened up.

It it were me I would have a consult with a surgeon just to gauge their opinion and see what your options are, you are under no obligation. Armed with that information you may decide that your current GI is right or you may want a second opinion.

At some point though your quality of life has to be considered and if non surgical methods aren't cutting the mustard it may well be the best way to go.

Dusty. xxx

 

[AmandaNG]

Thanks for the information and advice. I have a consult with a surgeon on Tuesday, so we'll see how it goes.

 

[David]

Here's a case study about the importance of the ileocecal valve (and that's just one specific variable). They excluded people with CD so they could determine if removal causes chronic diarrhea. What I wasn't aware of is that they can reconstruct the valve in some cases if you do indeed have to have it removed. You may want to inquire about that if they do feel it needs to be removed.

 

[Heather_D]

Hi Amanda, I have been going through something similar for the last few months. My GI doctor also did not want to do surgery and just kept talking about changing my meds; I take 4000 mg of Pentesa daily and 400 mg of Cimzia monthly (also been on Prednisone since I was in the hospital last month - tapering ends on 3/20). However, I don't believe the meds are going to take care of the scaring that I now have. After my stay in the hospital last month I was referred to a surgeon; and I'm scheduled for a small bowel resection on 3/22. I really believe that this is the only option I have at this point to stop all of the pain. I haven't had to go on medical leave yet, but I've been in the hospital twice in the last six months and it just keeps getting worse. At this point I tend to be in pain after even only small amounts of solid food; even when they are 'soft'. I stick to mainly liquids; as this has allowed me to continue working and help lessen the amount of pain I’m in. I hope you find the relief you need. I'm keeping my fingers crossed that my surgery allows me to go back to some sort of normalcy because I am tired of living like this. Good luck to you!

 

[leithcote]

My understanding of the ileocaecal valve is somewhat different to what is being discussed here... Of course, if surgery is possible without removing it, then that is by far the most sensible option.

Saying that, I think it's important to point out that the valve only seems to have a genuine role in *some* people and definitely regulates the flow of material from the small to the large bowel. Its removal can cause ongoing problems with diarrhoea, which whilst unpleasant, can be effectively controlled with medication or with dietary supplements.

For others, the valve seems to be practically redundant, and they manage perfectly well without it. Thus far, I am lucky enough to be in this category - my valve, appendix, and 40cm of small bowel were removed in a recent procedure.

I guess the unfortunate problem is that you don't know (and can't) which category you are in until after the surgery.

There are always pros and cons to consider with surgical procedures - but if you have continuing problems with narrowing and chronic pain, I think that surgery is definitely worth considering.

With regards, Tony.

 

[David]

Tony, the valve also helps prevent reflux of fecal matter and bacteria from the large to small intestine. SIBO is somewhat common in people who have had it removed. In addition, there's the matter of bile acid absorption which of course also relates to enterohepatic circulation. Removal also results in decreased fluid and nutrient absorption.

It's definitely not redundant.

 

[leithcote]

Thanks David, I wasn't fully aware of that particular function of the valve - but certainly makes sense - having a form of one-way regulation and preventing faecal reflux. Perhaps "redundant" wasn't the best choice of words... perhaps "loss of the valve is better tolerated in some individuals than others" would be a better phrasing?

Unfortunately mine was in such a mess - glued and stuck together with the ileum - it had to come out.

My major concern (as well as others) was that without the valve, you are *always* left with chronic diarrhoea and non-controllable bowels. My surgeon said that this was not necessarily the case (as so far this seems to be true for me) and was very dependant on the individual.

Tony.

 

[David]

"loss of the valve is better tolerated in some individuals than others" would be a better phrasing?

I think that's no doubt a fair statement

 

[archie]

Hi i had to have surgery for the same reasons as yourself although i had 1 ft of damaged bowel it wouldn't 'heal' with meds alone. I did have the valve removed and have never really suffered diarrhea infact the opposite (although I would be in the minority with that) I also don't really suffer any other problems so far without it. As Tony suggests it can be pretty damaged anyway due to the scarring that losing it doesn't really change anything. Obviously if you can keep it well and good, it is a tricky dilema to be in surgery versus meds all I can say is i've had great success from surgery and hope you do too if this is where your headed.