The great surgery debate!

[eastcoast]

Hi! I'm hoping to get some advice about possibly getting my first surgery for crohn's. I was diagnosed with crohn's in january 2013 and i've been on humira, remicade and pretty much everything else. Nothing has worked. I've never had problems with blood or diarrhea, but mostly just the stabbing pain in my ileum, and weight loss. I recently was admitted to the hospital and they put in a drain to drain an abscess that had formed from my small intestine rupturing, which is still draining three weeks later. My surgeon wants to do the pre-op surgery stuff in two days but i don't know if I'm ready to get surgery! I'm only 27 and I'm worried about having to get further surgeries down the road, constantly having diarrhea when I dont have that problem now, and all of the added complications. I can't seem to make up my mind. My husband and I are looking to have kids in the next few years and I know you have to be in remission to do so. And it would be nice to possibly eat vegetables and fruits in whole form again. I've read that people are glad they got surgery and couldnt believe they didnt do it sooner, but right now with the drain in I dont have any pain in my ileum, so its hard for me to say yes to surgery. I just dont want to trade one problem for a bigger problem if i do get it. But if they take the drain out maybe the abscess will come back and I will be at square one. So many what ifs! Any advice would be wonderful!

 

[Jennifer]

I had my first and only bowel resection when I was 17 (I'm 32 now). They removed part of the ileum, cecum and removed the ileocecal valve (about 8 inches in total). I get B12 shots every two weeks since my B12 is a bit low in the 300s (it's common after a resection of the ileum yet not everyone needs the shots as often and many can still get by with just oral supplements) but I don't have constant diarrhea. Not everyone has constant diarrhea when the ileocecal valve is removed.

My resection put me into remission for 14 years (continued on maintenance meds during remission). Just started my most recent flare last year but it's extremely mild in comparison to what I was dealing with before surgery.

It's up to you but if you need surgery to have a better quality of life then it could be just what you need to kick start remission. Let us know what you decide to do.

 

[If*]

Hello, this illness seems to come with many tough decisions. You are right to ask questions. Try to keep in mind that they don't casually recommend surgery for CD. A good question is, what will they be removing, how much will be removed and will the ileocecal valve be left in tact? Some adjust well after and some do have permanent 'D'. Diet can help with some 'after effects'. Also if rupture is a risk it is good to address the problem so it does not become an emergency.

Hope you get all the input you need to feel comfortable with your decision. Take care.

 

[ronroush7]

I had a resection in 2010. One of my doctor's associates was against surgery because he said the disease always comes back.

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[eastcoast]

Thanks everyone for the replies! I think I am going to go through with the surgery. Maybe I'll be one of the lucky few who stays in remission for a long time!

Jennifer - Which maintenance meds did you go on after surgery? My surgeon is talking about me going back on Remicade or Humira.

 

[Jennifer]

I was taking Mercaptopurine (50mg) and Asacol (6 pills per day, can't remember the dose exactly) prior to surgery and continued on those for about a decade and then my GI took me off Asacol where I continued on Mercaptopurine for 4 years before my next flare. Generally you would continue on the medication you were taking prior to surgery.

Edit: Going back on Remicade may be difficult as your body starts to produce antibodies after you stop taking it. The same happens with Humira but there have been less reports of Humira not working or causing a reaction after restarting the medication compared to Remicade. This is likely due to the mouse protein used to make Remicade (more of a guess really as I haven't researched it that far).

 

[ronroush7]

I had a reaction after restarting Remicade.

 

[Sparkles24]

Hi eastcoast! I was in the same situation as you are. My main symptom has always been pain and I was doing okay but after I had a colonoscopy in December my doctor told me that surgery would be the only solution for me since I had a stricture in the terminal ileum. It was caused by scar tissue and no amount of medication would help. It was definitely a very difficult decision and like you I thought of all the things that could go wrong. I'm happy to report that it's been two months since I had a resection and am so glad I went for it. I'm on mercaptopurine as my maintenance drug and they will do a colonoscopy in August to check if I need stronger medication. My life has finally come back to normal! I can finally eat fruits and vegetables that I couldn't eat in the last two years! I would recommend try to get as many doctor opinions as possible- that really helped me make the final decision.

 

[Daisy123]

For me, surgery has always given me back my life. I have had about 7 but that is over 30 years and I don't regret any of them. You are much better to have it while you are relatively well and not leave it until it is an emergency. good luck.

 

[eastcoast]

Thanks everyone! Update! I did end up getting surgery last Friday, so I'm still in the hospital dealing with constant, urgent d. Something I never had before. The surgeon said they took out 8 inches of small intestine, about 3 inches of colon and my appendix. I had a pretty bad abscess that is in my muscle so I still have a drain for that and they disconnected a fistula from that as well. If you've had the constant d, what do you eat or take for it? The doctor says it will go away within a month once my body adjusts. I'm just hoping thats true.

 

[Daisy123]

Glad you had the surgery! You have plenty of bowel left and it should adjust. It is very early days. I find eating fibre helps with my diarrhoea although I do take medication for it and have done for 20 years. So there is medication that will help if needs be but it is still early days and you need to give it time. The pain medication should help with the diarrhoea or are you off it? Opiates have a constipating effect. I am avoiding gluten and lactose but generally I eat anything including fruits and vegetables. So glad you are on the path to recovery.

 

[eastcoast]

I am on oxycodone, which I think is giving me slight constipation that you are talking about. But, I also feel crampy and bloated! Before surgery I was so afraid of eating vegetables, fruits, and fiber so I think a part of me is still afraid to try. Maybe I should wait for more healing? It's only been 5 days. I've just been eating mostly white bread with jelly, crackers, light dry cereal, chicken and Ensures.

 

[Daisy123]

I am on oxycodone, which I think is giving me slight constipation that you are talking about. But, I also feel crampy and bloated! Before surgery I was so afraid of eating vegetables, fruits, and fiber so I think a part of me is still afraid to try. Maybe I should wait for more healing? It's only been 5 days. I've just been eating mostly white bread with jelly, crackers, light dry cereal, chicken and Ensures.

Sounds about right to me. Took a couple of months for me to be able to eat normally again after my last surgery.

 

[ronroush7]

I am on oxycodone, which I think is giving me slight constipation that you are talking about. But, I also feel crampy and bloated! Before surgery I was so afraid of eating vegetables, fruits, and fiber so I think a part of me is still afraid to try. Maybe I should wait for more healing? It's only been 5 days. I've just been eating mostly white bread with jelly, crackers, light dry cereal, chicken and Ensures.

I had a resection four years ago. I still have to be careful of a lot of fruits and vegetables.

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[DJW]

Hi. The cramps and bloating should pass as you start moving around.

 

[SupportiveMom]

I am facing this debate for my daughter and am starting the process of research as we are awaiting next steps. To make a long story short, she has being diagnosed with crohn's for 2 years, been or is on almost every IBD med out there, & now we got a 2nd opinion because the GI wants surgery. New GI (at the top kids hospital, and the GI is the head of the IBD department) is changing her diagnosis to Indeterminate and based upon the next few tests & scope she will recommend what type of surgery. (more details are here: http://www.crohnsforum.com/showthread.php?t=62300&page=4, #107 posted 8/6 if you want to read)

She is 13, almost 14 - If you had a choice for the surgery & it wasn't emergency how did you make the decision? What do you wish you knew then that you know now?

 

[eastcoast]

In my instance, my surgeon basically said it wasn't a matter of IF I would have surgery, but when. I had a pretty bad abscess from a small intestinal perforation. They tried to drain it, but it just wasn't collapsing on its own and it wouldn't stop draining from the infection. That's kind of what made up my mind. That, and the fact that maybe possibly my Crohn's won't come back! (wishful thinking). I do not regret surgery at all. I feel so much better now than I did before. I have a greater peace of mind now as well. I can eat the healthy foods I want and go for walks more often now without pain. I kind of look at it as a fresh start and I feel like a normal person again.
I met with my surgeon probably 4 or 5 times before I had the actual surgery. So, my husband and I made sure to ask a lot of questions beforehand. Nothing after surgery was really a surprise. I know there's a great list of questions on this forum to ask your surgeon if your daughter does decide to get surgery. I hope they get her diagnosis right and help her out soon!