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Colectomy or new drug?

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Posted 12/14/2018 9:26 AM (GMT 0)
@ks1905, thank you for your reply.

@nssg, I have been living with an end colostomy for the last three years. It was meant to be temporary, but I still have some inflammation, so no anastomosis for me in the near future. Waiting to get better.

The removal of the colon (thus living without the colon) is itself problematic for health; but the bigger problem is living with a stoma attached to your abdomen. It's not so much of a problem if you have a temporary stoma, because it is, although not a good thing to live with, temporary; and you know you will become normal again, that this is not a permanent situation you have to live through.

I think, both physically and psychologically, the bigger negative impact on the patient generally happens when the stoma is permanent - which is understandable. Though I have not researched the surveys (if any?) on the patient perception of the outcome. The stoma can, depending on the person, have quite complex effects on the patient, especially if it is permanent.

The worst part is, you won't know how it would be to live with a stoma unless you actually live with it. When we are considering the surgical option, we are making a choice when we mostly cannot know the other option we are given.

Post Edited (xy123) : 12/14/2018 7:10:52 AM (GMT-7)

Posted 12/14/2018 3:11 PM (GMT 0)
I consider surgery to be similar to the decision about biologics and meds with “scary” possible side effects, in that the choice is never between surgery/medication and being perfectly healthy. It’s between whatever situation we find ourselves in, and the willingness to assume risks with the potential for finding ourselves in a better situation. If I end up considering surgery, it will be with a goal of a functioning j-pouch, but with the acceptance of a possibly permanent ostomy.

I don’t think anyone would choose a permanent (or even temporary) ostomy over a healthy and functional colon, but that’s not the decision any of us have made/would be making.
Posted 12/14/2018 4:50 PM (GMT 0)

xy123 said...
@ks1905, thank you for your reply.

@nssg, I have been living with an end colostomy for the last three years. It was meant to be temporary, but I still have some inflammation, so no anastomosis for me in the near future. Waiting to get better.

The removal of the colon (thus living without the colon) is itself problematic for health; but the bigger problem is living with a stoma attached to your abdomen. It's not so much of a problem if you have a temporary stoma, because it is, although not a good thing to live with, temporary; and you know you will become normal again, that this is not a permanent situation you have to live through.

I think, both physically and psychologically, the bigger negative impact on the patient generally happens when the stoma is permanent - which is understandable. Though I have not researched the surveys (if any?) on the patient perception of the outcome. The stoma can, depending on the person, have quite complex effects on the patient, especially if it is permanent.

The worst part is, you won't know how it would be to live with a stoma unless you actually live with it. When we are considering the surgical option, we are making a choice when we mostly cannot know the other option we are given.

Thanks for sharing your story. I am sorry you're living with an ostomy and you're not thrilled. How is it a colostomy if you have no colon?

I guess no one is thrilled with an ostomy, especially when they are hoping for it to be reversed. I know what you mean... when I had a temp ostomy and was feeling down, I knew it wasn't permanent, and that helped me pull through. I do however know some people from here who made the decision to have a perm ileo and they live very happily. It's individual. Some people aren't as impacted by having an ostomy. It seems like people who are married with families, often they just want their lives back. They want to be able to spend time with their families, and they don't want to be a slave to the toilet. I know if I were single, having an ostomy would be tough for me. I wouldn't want to explain it to people, but ultimately, we all explain a lot of things. Explaining UC isn't fun either, explaining why you're in and out of the bathroom 10x a day, and you run like an Olympian to the bathroom, are on so many medications, make excuses... Living with severe UC is not easy to explain.

Celeriac makes a good point too, it's not like we chose any of this. Our colons are failing. It's not a choice between being healthy and living with an ileo. It's a choice between living with a debilitating chronic illness, or living with a less than perfect situation that *hopefully* improves your situation - and you're right xy you do not know if it will be an improvement until after it's done. It's really a difficult position.
Posted 12/14/2018 8:26 PM (GMT 0)

notsosicklygirl said...
How is it a colostomy if you have no colon?

I have Crohn's that is mostly in my colon, so they did a partial resection for me; it wasn't total colectomy. Though most of my colon was taken out, I still have a little part of my colon left, which is attached to my abdomen. In the above post on the lack of colon, the meaning I intended was theoretical, rather than reflecting my own experience. Thank you for your kind words.

Post Edited (xy123) : 12/14/2018 1:32:43 PM (GMT-7)

Posted 12/14/2018 9:06 PM (GMT 0)

xy123 said...

@nssg, I have been living with an end colostomy for the last three years. It was meant to be temporary, but I still have some inflammation, so no anastomosis for me in the near future. Waiting to get better.


XY,

3 years is a long time for a temporary ostomy. You have to be careful of muscle atrophy in your sphincter. Are you doing kegel exercises?

I don't know what meds that you are on but if I was in this situation then I would get really aggressive with the medications or move on with the permanent ostomy.
Posted 12/14/2018 9:52 PM (GMT 0)
ks1905, I think you are definitely right about the muscle atrophy in the sphincter, and the importance of kegel exercises in my situation. I am very surprised that I have never thought about these before (in my own context), and I have never read anything mentioning these before either. Doctors and surgeons haven't said anything too, which is not surprising.

Thanks for mentioning. Your caution makes sense biologically. I am curious, have you read anything about this before, or did you just thought about it now?

I am on pentasa, 6mp, and Cimzia, in addition to a strict diet and some supplements. I will replace Cimzia with Stelara as a next step, because Cimzia hasn't made a difference good enough to eradicate the inflammation, it only reduced it to a degree.

My GI doctor, and two colorectal surgeons warned me about the increased risk of carcinogenesis in the unused section (the rectal stump). This increased risk is independent of the already increased risk we have from IBD, this is specific to the situation where the unused section has an especially higher risk of cancer formation (why this happens is still a matter of debate in the medical community, according to them). This is also very concerning for me, and I have been trying to reduce the inflammation as best and fast possible; but I also am aware that, the anastomosis itself can cause a full-blown flare-up, especially after the stream of feces through the lower (and currently unused, inflamed) part of the colon triggering local inflammation is a big possibility and it's been shown, over and over that many Crohn's patients who were doing more or less fine after the diversion (resection and stoma) had an occurrence of the old/hellish symptoms after the anastomosis. So while I am trying to reduce the inflammation, I am also trying to be sure (as much as possible) that the lowered inflammation is durable, and not a transient event.

Post Edited (xy123) : 12/14/2018 3:06:17 PM (GMT-7)

Posted 12/17/2018 8:41 PM (GMT 0)

xy123 said...
ks1905, I think you are definitely right about the muscle atrophy in the sphincter, and the importance of kegel exercises in my situation. I am very surprised that I have never thought about these before (in my own context), and I have never read anything mentioning these before either. Doctors and surgeons haven't said anything too, which is not surprising.

Thanks for mentioning. Your caution makes sense biologically. I am curious, have you read anything about this before, or did you just thought about it now?

I am on pentasa, 6mp, and Cimzia, in addition to a strict diet and some supplements. I will replace Cimzia with Stelara as a next step, because Cimzia hasn't made a difference good enough to eradicate the inflammation, it only reduced it to a degree.

There was a former member here (Pluot) who was an undergrad and had surgery before she went to Medical School to become a GI. I had the same surgeon as Pluot and we went to the same GI practice. She was about a year ahead of me in the surgery timeline.

She researched all of this a lot more than I did but I remember her mentioning a couple of times that 2-3 year mark was when you should really make a decision because of muscle atrophy.

Cimzia never really worked for me.

Stelara worked right away for me, like two days later. It is very fast acting. I had to discontinue Stelara for 8 months when I had to go for hip surgery. I was able to restart Stelara without any antibodies or side-effects. My GI recently ran a promtheus test on me to see if I had any Stelara antibodies and I didn't have any.

If you're going for a takedown then you'll probably have to discontinue your biological and 6-mp for the healing process. What are you going to do in the interim for your IBD symptoms? I was able to start and stop Stelara without any issues, I'm not sure that I could have done that with Cimzia or another anti-tnf biological. I used antibiotics to treat my pouchitis while I was recovering from hip surgery.

I'd encourage you to try Stelara sooner than later, waiting is not a good option. How long have you been on Cimzia?
Posted 12/17/2018 9:16 PM (GMT 0)

ks1905 said...


If you're going for takedown then you'll probably have to discontinue your biological and 6-mp for the healing process. What are you going to do in the interim? I was able to start and stop Stelara without any issues, I'm not sure that I could have done that with Cimzia or another anti-tnf biological.

I'd encourage you to try Stelara sooner than later, waiting is not a good option. How long have you been on Cimzia?

I asked my GI doctor and the surgeons about the possibility of the biologic and 6mp affecting the healing process, and increasing the risk of serious infection during and after surgery. They said the risk is very small, not something to care about really. Though, a general surgeon told me the 6mp will probably affect tissue healing to some degree.

My GI doctor probably won't think of stopping the 6mp before surgery, when the time comes.

I have been on Cimzia for more than six months. I'll get an MRI scan in a few months, to see how the things are looking, then I'll start the Stelara.

It's good to read that Stelara has worked for you, especially in a very short time. Also good to read that Ustekinumab doesn't seem to have the same antibody formation problem the other biologics have. Here is a link on that: https://www.crohnsforum.com/showthread.php?t=84342
Posted 12/18/2018 10:58 AM (GMT 0)
Surgery is a blessing if you’re one of those people like me who failed every medication. So having been through it all, I will recommend surgery every time for someone who is the right candidate for it. I had j pouch surgery 8 years ago and it’s been smooth sailing ever since....great to have my life back. It was very tough to go through, but the end result has been so worth it. Best of luck.
Posted 12/18/2018 4:07 PM (GMT 0)
Just expect to heal slower after a surgery if you are on 6MP, a biologic, or prednisone. All slow down the healing process.
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