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When did you decide surgery (colostomy) was the right thing to do for your Crohns?

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Posted 10/18/2011 5:43 PM (GMT 0)
Hi...to give you a little background, my husband has had Crohns for over 18 years now. There were times when he was in remission when he was younger. He is now 33 and the last 5 years have been tough. The last year was especially hard because we had a baby and he was at his sickest. He started Humira and 6MP in June/July of this year. His CD has improved sigficantly. Like going to the bathroom 25+ times a day to now about 5. He has a lot more energy and is actually feeling pretty good. He has gained 30 pounds since August!

He had a scope yesterday, but the Dr couldn't get past the first stricture which is 15 cm from the rectum. She is saying that his rectum is so diseased that she recommends he get his whole colon taken out (colostomy). She believes that that is the best course of action because of where the disease is and his history. We've been going over the pros and cons of continuing the meds versus the surgery. She's saying the because of the extent of his disease, the meds isn't helping as much as it should. But, I'm having a hard time wrapping my head around that because he's feeling so much better.

Life is a lot better than it has been in the last year, but of course quality of life could be a lot better. I want my husband to be with me and our daughter as long as possible and live a long healthy life. If the diseased part looks this bad even on meds for the last 4 months, is that really bad? If the Dr can't get past the stricture, then we can't monitor his colon for cancer, correct?

I know that nobody can really tell us whether he should have surgery or not. BUT, if you have had surgery and live with a colostomy bag, what is your life like? Knowing what you know now, would you do it all over again? Do you have a better life than you did when you were only on meds? Do you think it's too early to tell for us on whether the meds are going to do their job (Humira for 4 months and 6MP for 3 months)? What are the risks and cons of having a colostomy? Can the Chrohns just reappear somewhere else? Can you go swimming? And if so, how? Wouldn't the bag show? How many times do you have to empty the bag?

This is such a big decision and would appreciate anybody's feedback. Thank you so much!!!!

Posted 10/18/2011 9:33 PM (GMT 0)
It is a big decision, and it's great that you are getting information here -- there's a lot of knowledge. Welcome!

The vocabulary here is new and confusing, and I think you mean that the doctor is recommending a colectomy, not a colostomy -- a colectomy is when they take the whole colon out, a colostomy is when they leave all or part of the colon in, and bring part of the colon to the belly to create an opening (the opening is called a colostomy). If the whole colon is out, then part of the small intestine is brought to the belly, and this is called an ileostomy (for ileum, the end of the small intestine).

Or is he recommending that you take the rectum out and only part of the colon? That could be a colostomy.

In any case, that's not the main thing here, but I mention because I am not sure whether or not I had the same surgery as your husband.

In my case, I took most of the drugs -- I was on remicade and 6mp, and then humira when that didn't work, and then cimzia, as well as prednisone a lot of the time. I was adamantly opposed to surgery, wanted to keep all of my original parts, but then I had a set of horrible complications -- I broke out in painful boils all over my butt (cutaneous Crohn's, a rare thing), had a terrible eye condition, and then spiked a 104.6 fever, while I was on these terrible immune suppressing drugs. I was in the hospital for 10 days, and when I got out, I found out that my school had hired someone to teach for me for half the semester.

At that point, my decision became very clear -- I'd rather keep my job than my colon, and I never want to take those horrible drugs again..... I have not wavered since. I am very glad I made my decision and do not regret it -- but before that, I hadn't been ready.

Some things about my life now: no urgency ever, I don't have to know where the bathroom is everywhere I go. I can eat all kinds of things I couldn't eat before. I put on weight, have more energy, and look a whole lot better. I have reconnected with friends I was too sick to see.

I had a complication from my surgery that has not let me go swimming yet, but most people can go swimming within a few months. I had my anus removed and sewn shut (I was freaked out by that part, as I didn't know that surgeons often do that until a bit before the surgery), and the wound did not heal properly -- I had a second surgery a few weeks ago to fix that ... but I think there are only two of us on this list who have had this complication.

Despite the complication, my life is WAY better than when I was sick.

There are various wraps and belts and things for men to cover the bag when swimming, and with a little effort, it won't show. Being able to swim was a big concern of mine too, as I love to do it, and I'm looking forward to it when I heal up from this surgery.

I empty the bag about 6-8 times a day. As you get further out from surgery, the small intestine starts absorbing more liquid and functioning more like a colon, and then you don't have to empty quite as much -- thinking this process might not be done for me yet.

As for the meds, 6MP takes a long time to kick in, up to 6 months, so it might be too soon to say with it. It sounds like the humira has started working.

Has he had any involvement in his small intestines or only in his colon? I had only had involvement in my colon, and I was told that there was an 85% chance that the surgery was a cure. Crohn's can be anywhere in the digestive system though.... so some folks still need meds after the surgery.

It sounds like the surgery is being recommended because of the stricture, not because the meds aren't working. I don/t have experience with that, but others on the list do. Strictures can be very serious and there are people here who have had surgery because of them.

Feel free to ask more, and I'm sure others will be along w/their thoughts.
Posted 10/18/2011 9:36 PM (GMT 0)
Hi I have answered your post on the Crohn's forum. Hope you find some answers.
Posted 10/19/2011 1:02 AM (GMT 0)
Hi Blueglass! Thank you so much for your response! We talked about it a little more today and we both agree that what gives us the longest, healthiest life together is the right choice. I believe he has disease in the small intestines as well, but just very severe in the colon and rectum. It really helps to know that you don't regret it. Also the idea of not having to worry about where the next restroom is a big thing to look forward to.

I wish you all the best in your recovery! Hopefully you heal in time for next swim season!
Posted 10/19/2011 1:22 AM (GMT 0)
Hi Madigascar,
I can speak for most people on here and say that most people here will probably say they don't regret it. But I'll let them tell their stories!

As for me, I had Crohn's for 10 years before surgery. My dr had tried every drug for me, and finally just said, surgery...and I was in complete denial at first. That did not last long because I was really ill (going 25+ times a day on 60mg of prednisone and no food at all), and then it really wasn't a choice. I had to do it.

I CHOSE a permanent ostomy (he offered a temporary one), and I could not be more thankful every single day. It has completely changed my life. You get so used to living this crappy quality of life and you trick yourself into thinking that you're not living much differently than anyone else. Once you have surgery you realize what your life should have been like this whole time. It's completely different, in a really good way.

Things that have happened to me in the last 1.5 years since surgery:

-got off all meds
-got a new job teaching school (was too sick to do that before, could barely make ends meet)
-bought a new car
-bought a brand new townhouse!! (could barely make rent with medical bills and not working before)
-went from 92lbs (at 5'6) to 135. Now I'm trying to stop eating so much and work out! LOL
-actually feel HEALTHY!
-my hair stopped falling out; stopped wearing wigs

It's so much better. SO. MUCH. BETTER.

Please feel free to ask any other questions you have.
Posted 10/19/2011 1:52 AM (GMT 0)
I had UC so im a little different, but i was just so tired of missing out on everything! I wasnt a good mother or wife, i couldnt do the things i felt like i should and wanted to!
I would think, with crohns, they are probably wanting to do a colocetomy, i wouldnt think they would leave any of the colon in because it is diseased, but thats just my opinion.
I empty 4-8 times a day it depends on how much i eat, and what i eat. If i need to i can take immodium and stop my output almost completly. But it only takes a few minutes to empty and its not something that cant wait a minute. Theres no running for bathrooms to empty. Most of us empty when we pee.
I had surgery in april and was swimming in late june. You have to wait until everything is closed all the way up. I think most of the guys wear shirts over their suits to hide the bag, like swimshirts. But my husbands bathing suits come up high enough on him if he had one i dont think it would show.
Bottom line, anytbhing that gets the disease, or some of it, out of his body is a plus!
Posted 10/19/2011 4:32 AM (GMT 0)

This is the BEST place to come to for help in making these tough decisions.   I was seeking info a few months ago, even though I was 95% sure I wanted to have the surgery and get my life back.   I have never regretted it, even though I am only 3 months post surgery.   

If you want to read my story, here is a link to the thread and the many kind and reassuring replies I received.

https://www.healingwell.com/community/default.aspx?f=33&m=2015240

I have indeed gotten my life back and am 100% happy with my decision.  I have 2 adorable granddaughters and a grandson on the way, and I was missing out on life with my family, and life in general.

I may be a little different than most, as I chose to NOT try Remicade or Humira.   After my colon & rectum were removed, my surgeon said they were in such bad shape that the drugs would not have helped.  

It is totally a personal choice and only your husband can make the decision, with your support.    One thing I would speak with his GI about would be if he is in danger of developing Colon Cancer with having Crohn's for 18 years.

Keep us posted . . . we care :-)

Posted 10/22/2011 12:54 AM (GMT 0)
Thank you all for responses...you guys are awesome. We had the appointment with the GI and surgeon and decided to get the surgery! My husband is pretty excited about it and is scheduled for Oct 31st!

The surgery he will be having is total removal of his colon and rectum. The surgeon will connect his small intestines to the abdomen. So this is called an ileostomy, correct?
The Dr was saying that the output is much more liquid than a colostomy.

We have gotten so used to just making it by with his Crohns and he hasn't been open to surgery until recently. So, I will keep everyone posted! Thanks again for helping us make this decision!
Posted 10/22/2011 1:10 PM (GMT 0)
Taking out the rectum and colon is called a proctocolectomy, and yes, he will have an ileostomy. The output is more liquid because the colon absorbs liquid, so with a colostomy,people still have some colon left to do that, but with an ileo, it just comes right out.

Congrats on making this decision, and feel free to ask whatever questions you have.

And yes, swimming next year for me! (and even in the middle of winter if that's when I get the OK....)
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