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Crohn's Disease
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Posted 3/5/2013 2:37 PM (GMT 0)
Some background: I was diagnosed with Crohns around 8 years ago. I've been on pentasa, predisone, humira and now remicade and 6mp. Two CT-scans since the summer have shown chronic strictures in my small intestine. I suffer from pain, bloating etc. If I eat a normal size meal, I pay for it.

My regular GI suggested I seek a second opinion so I recently saw a GI at Mount Sinai in NY and was referred to a surgeon at the same hospital. The surgeon thinks I could benefit from surgery and I'm strongly inclined to agree. He contemplates doing either strictureplasty and/or resection with the goal of preserving as much of the intestine as possible. The strictures are not located in just one area so he needs to do the surgery with a conventional incision but with laproscopic assist.

When I met with him recently, he went over the risks of the surgery and I got somewhat concerned but am trying to focus on the benefits. Then last night, my curiosity led me to try to find a video of a strictureplasty on you-tube. instead, i found a video of a young lady discussing and demonstrating how to change an ostomy bag. That freaked me out like nothing else. I cannot even begin to comprehend life with an ostomy bag and it's scaring me.

I will speak to my doctors about this as well, but I wanted to post it and get the input of people who may have gone through a similar surgery as I plan to undergo. What are the chances that I will end up with an ostomy bag either short term, long term or permanently?

The whole idea of it is really disturbing me.

Thank you.
Posted 3/5/2013 6:41 PM (GMT 0)
Why are you jumping from strictureplasty to a full-blown colectomy with ileostomy? There is nothing relating one to the other. As somebody with small bowel disease only, you in fact would not even be considered for a colectomy (removal of the colon).

At least find out the probability of something first before having a panic attack over it. When I first googled images of stomas, I thought it was the most hideous thing ever and wanted to cry. That was several months ago, when the prospect of me having one was a real possibility. The prospect has become reality and I'm now the owner of a 2-week-old stoma. And I'm fine with it. I'd choose a stoma a thousand times out of a thousand compared to what I had previously. Maybe you haven't yet reached your breaking point but I had. I dunno how old you are; age probably makes a big difference to something like this. (I'm 38 for the record.)
Posted 3/5/2013 6:53 PM (GMT 0)
you will always remember having to poop in a bag which is just awful..

No, it's just pooping into a bag. You don't feel anything. It couldn't actually be any simpler than it is. The only slightly tedious thing is changing the bag, but that only needs to be done once every two days or so. It takes 5-10 minutes, not the end of the world.

You had a temp ileostomy. Temporary loop ileostomies are known for being harder to handle than permanent end ileostomies (though I can't compare from personal experience, admittedly). Also, studies have shown that folks who have ileostomies thrust upon them as a result of emergency surgery fare worse than those who chose willingly to have an ileostomy put in and plenty of time to prepare beforehand.

But almost everyone who has an ileostomy adapts to it sooner or later. It's easier to adapt, though, if you know the thing is permanent and aren't waiting for it to be reversed.
Posted 3/5/2013 7:11 PM (GMT 0)
ggaza, thank you for your advice. I am fairly certain i could benefit from the surgery as I've tried various medications and the crohns has gotten worse over the past 2 years or so. however, my case seems somewhat like yours in the sense that i haven't really had many of the traditional crohns bathroom issues.

nicecupoftea, i think part of the problem is my overall ignorance of the whole ostomy situation. i don't know if i would ever need one. i was just freaking out over the possibility of having one and was looking for someone to slap me around and say, 'what the hell are you thinking? that doesn't apply to you!'

my colon will not be removed as it is fine, thankfully. but i was concerned about an ostomy anyway because the surgeon mentioned it as a possibility in the event of leakage/infection in the intestine after the surgery. it would be for 3 months if that was the case.

Part of this is just generalized fear of the unknown. I have never had any surgeries before (i'm 35) and the idea of having parts of my intestine removed has just been bothering me. the surgeon said that he may do a combination of strictureplasty and resection but may not know for sure until the surgery begins. adding to the generalized fear of the unknown is the fact that in my job, i tend to see a lot of what happens when things go wrong. i am an attorney, and while i don't do a lot of medical malpractice work, i have worked on some. one that sticks with me is the case of a young lady (roughly 19-20) who eventually died due to severe crohns and malnutrition. I know it's not the norm, and i don't see malnutrition on the horizon, but the severity of her crohns is what scares me.

basically, i'm scared and nervous about all this and i know it isn't all rational.
Posted 3/5/2013 8:16 PM (GMT 0)
Oops, sorry. Yes, temporary ileostomies can be used to bypass sections of the bowel to enable healing. But in such cases, you'd keep your colon and the ileostomy would be a temporary one. Also, most folks who have a resection don't end up with a temporary ileostomy. I couldn't give any stats offhand, but ileostomies do not seem to be especially common with Crohn's, even temporary ones.

Your job, and boards like these, are naturally skewed towards worst-case scenarios. There are thousands of people who have ileostomies for whom nothing goes badly wrong and who are happier afterwards than before, but you won't hear from them. For various reasons, people are more likely to go to the effort of posting about bad experiences than they are about positive ones where little has gone wrong. My stoma nurse told me that she hadn't met one person who regretted having a stoma afterwards. Of course you might be sceptical about that; I was a bit. But she swore that she wasn't lying about it; that she would have told me if anybody had bitterly regretted their operation.

Obviously that doesn't mean things don't go badly wrong from time to time. But it's rare for them to, much rarer than for them to go basically right. Operations are almost infinitely safer than they used to be.
Posted 3/5/2013 9:43 PM (GMT 0)
I don't know, ggaza, but you were having continuing problems with an abscess, that clearly needed to be addressed in order to resolve it.

Remicade is a very powerful drug that is the most effective tool out there for treating Crohn's, so I would guess that even though you had a resection there must have still been active disease that your DRs thought they could resolve with this treatment. Maybe otherwise they'd have had to remove more bowel and give you a permanent bag?

You should probably review your charts from this time and remind yourself of what the facts were.
Posted 3/5/2013 9:59 PM (GMT 0)
Were you an adult when these decisions were made? Did you understand the reasons for the decisions at that time? Are you still on remicade?

Pentasa is a nice safe drug but studies have shown it is a poor choice for people with fistulizing disease for one (you had abscesses so I assume there was some kind of fistula activity) and will not induce remission in someone with active and agressive Crohn's.

Despite your experience of not having "the regular" symptoms of Crohn's like diarrhea and fever, it sounds like you were pretty sick. Or maybe not, maybe you're right and your DRs were just mercenaries looking for a surgery to bill.

The OP's situation is much different. He has chronic problems with eating correct portions and frequent pain. I don't think it's wrong for him to consider surgery. I didn't post at first because I don't have such active disease and don't anticipate ever needing surgery, but I've known several people who've had strictures resected and they've done really, really well.

Posted 3/5/2013 10:05 PM (GMT 0)
Get a copy of your charts and sit down with your parents to talk about what happened. It sounds like you are angry at the way this illness was treated.
Posted 3/6/2013 12:00 AM (GMT 0)
Avi77, just to give you a positive view of things, 16 years ago i was in your position. I had been suffering with chronic pain, particularly after eating and would actually stand looking at the food in the fridge crying because i was hungry but afraid to eat because of the pain! I had bouts of running to the toilets constantly and then bad constipation, i really was very ill. Following several tests and with a weeks notice i had a bowel resection and stricture plasty in 3 places. For the last 16 years my symptoms have been relatively mild, i still have to go to the toilet several times a day and alot of foods don't agree with me but i haven't until recently suffered with the permenant pain that i had previously. I now have another stricture that is causing me problems but it was bound to happen eventually and i think 16 years is pretty good going! Also just to add, i have never taken any meds for my crohns other than pred before and for a few months after the operation, i have never been offered any although i'm beggining to think that may have been bad practise from my consultant!
Posted 3/6/2013 2:36 AM (GMT 0)
Kel, thank you for the positive view. I think I feel better about some of my concerns now. 24 hours ago I was pretty worried. I know every situation is different and there are no guarantees but just hearing about some of the positives helps.

My new concern is whether my job will be there for me when I'm ready to return. I told my boss about the time I may need to kiss and he didn't seem pleased. I have a 25 mile commute by car each way and I will try to push myself to get back to the office three weeks after the surgery. I don't know if I'm being realistic though. However, I cannot risk losing this job.

Thank you everyone for adding your two cents.

Crohns is just a barrel of fun, isn't it? I always thought I had a pretty minor case but recently I've been learning that its probably in the moderate to severe range. But I recognize that many people have it worse than I do and I'm thankful I can function as well as I can.
Posted 3/6/2013 9:26 PM (GMT 0)
You're welcome, i know it's scary. Just wanted to add that i know you're worried about your job but returning after 3 weeks after such an operation is completely unrealistic, you shouldn't even be able to drive that soon after and you have to make sure you take the rest you need or you can do more harm than good
Posted 3/6/2013 10:24 PM (GMT 0)

kel said...
You're welcome, i know it's scary. Just wanted to add that i know you're worried about your job but returning after 3 weeks after such an operation is completely unrealistic, you shouldn't even be able to drive that soon after and you have to make sure you take the rest you need or you can do more harm than good

This!

I hope somebody can give you good employment advice, because your boss needs to learn that making you jeopardise your health for your job is not acceptable. If I knew what advice to give, I would give it in a heartbeat. But please, try to explore other alternatives. A start may be to search old threads on this site for employment-related advice. (If you add Crohn's to the search box, all the results which come up should be Crohn's forum threads.)

Best of luck...
Posted 3/7/2013 12:51 AM (GMT 0)
I asked my boss straight out if I could lose my job due to my absence after the surgery. He said they wouldn't fire me for missing time. I told him they wouldn't have to pay me for what I miss so I hope that helps also. However, I'm an at-will employee and they can fire me for almost any reason or no reason at all.

Either way, I told him that while I may want to come back after three weeks, I cannot guarantee it.

But again, I'm just venting my concerns here. Some of them may be overblown but I'd rather get them out and be told that I'm over-thinking it than hold them in and ruminate over them endlessly.
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