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If you were me, would you get your stoma reversed?  

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Readann
(@readann)
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Joined: 5 months ago
Posts: 11
March 9, 2020 3:32 pm  

I have a different situation than many of you, but long story short, I have a defective digestive system and because my colon, rectum, an anal sphincter don't function properly, I electively got an ileostomy and have had nothing but issues. Diet is still awful, but that's besides the point. Pain is finally getting somewhat under control (I have chronic abdominal pain).

I have considered getting reattached at the rectum (IRA procedure) and just dealing again with my shitty pelvic floor. Prior to surgery, I had to take a huge cocktail of drugs each day and basically did a colonoscopy prep for 5 hours, then fasted (mostly or liquids) until dinner, where I would eat my calories then do it all again the next day. This sounds okay, but it was awful and painful and I couldn't work or function as my bum drizzled stool often.

Anyway, this is my stoma timeline:

  • late June 2019 - got loop ileostomy as a trial; had some issues, but not too many since it was still new
  • August 2019 - had many issues with random swelling and lots of pain. Felt like blockages. Still on liquid diet
  • late September 2019 - many blockages here and there (still mostly liquid or pureed diet); random days of loads of blood from junction, despite wafer not rubbing. Very frustrated
  • October 2019 - huge blockage, hospitalized, resolved within week
  • October 2019 - two days after being home from hospital, stoma completely retracted, distal loop sent poop to bum, lots of diarrhea, emergency surgery -- found some sort of stricture caused by who knows what in my intestine -- changed loop ileostomy to end ilestomy
  • October 2019 - horrible healing, lots of pain, huge stoma, frequent blockages, lots of swelling 4 weeks later on CT scan, couldn't eat.... was hospitalized for on TPN to figure this out
  • November 2019 - found SMA syndrome, still on TPN, still in hospital
  • December 2019 - late December decided to do colectomy as I would need the colon out in case they did SMA surgery. Revised the stoma for a third time
  • Post-surgery December forward - was hospitalized until February. Moved from TPN to feeding tube to some food and stoma seems to be working except...

New stoma is very long and at 3 months post-surgery, the darn thing prolapsed. I got it back in but worried about recurrence. My doc made my abdominal wall opening quite large this time around to try to accommodate any issues from last time. So that definitely could add to it.

Still having trouble eating but that is my digesting system and not this stoma.

Pre-surgery was very active and can't do many things anymore.


Thank you for reading, but here's the thing. Do I even try IRA? I am worried it will be even worse. Obviously my doc doesn't want to trial surgeries now that i have had three in eight months! Will this ostomy EVER work out for me? I am on eggshells now for another prolapse!

My brain is going to explode, like I said. I understand that it takes awhile to get used to the ostomy, but as I have written, I have had nothing but issues with it.


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JTVT
 JTVT
(@jtvt)
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March 9, 2020 7:45 pm  

Hi Readann,

Welcome and sorry to hear about your woes. Not sure how many people will be able to comment on the IRA as it’s not really performed anymore for UC. It was the approach used before the j pouch. Maybe following colon resections for CRC so someone may be able to speak to it. If your colon was the issue then both the ileostomy and IRA should be an improvement. It sounds like motility was an issue for you? Do you find things move through you faster and with less discomfort without a colon? Do you still have your colon? That benefit should continue whether you’re diverted to a stoma or your anus. If you have SMA syndrome that may be the source of all the obstructions but sounds like that may be in question. Obstructions can be at the level of the stoma or from adhesions and the risk of the latter only increases with more surgery. 


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VeganOstomy
(@veganostomy)
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March 10, 2020 11:18 am  

@readann I remember some of your troubles from a few months back, and I'm so sorry that you're still having issues.

Were you ever diagnosed with a motility disorder? 

Have you voiced your thoughts on the IRA procedure with your surgeon? I'd be curious to know what they have to say about it and whether they believe it will give you some relief. 


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LK
 LK
(@dlkfiretruck)
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March 10, 2020 12:41 pm  

Readann...wow, you have sure been thru a lot and are likely much stronger then you may think you are.  When my gut issues were first seen by GI's I was told a few things, and others were rudely insinuated, none correct. My first gut surgery, by a highly respected GI Surgeon, who could think outside the box, was a Complete Colectomy Ileorectal Anastomosis with a J- Pouch. I never missed my large bowel! A motility test was what proved that surgery needed.  Gut pain was so excruciating and everything that came with it. 

Now, with  a ten year old ileostomy, I so apprecite this little foreign friend I named Rose. My stoma,  even with all the trials, once settled in, and I "accepted it", my life began to change for the  better. I had to learn to work with it in my daily life. It's very doable! When I as dealing with a very tired pelvic floor and incontinence I welcomed my stoma.  I would never go back.

 I had 7 surgeries in 6 months in a  long 13 1/2  month hospital stay being transferred to a larger facility half way thru, on TPN & a vacu-pak as well. A few years later my  stoma  followed. Making 9 bowel surgeries. 

By this point your likly developing scar tissue. We all strive for normalcy but what is normal?  If I were in your pouch,  I would try and make friends with my stoma, give it a name, change it till you find what suits it best, and try to make this work the best way I know how.  Scar tissue and more surgery is a whole other issue believe me. My story is long and complicated but 2 yrs. ago, I found the " BEST support"  I have ever had amongst humans in my 62 years right here!!! I was ten  years old first dealing with bowel pain and severe constipation,  as long as 18 days without movements. when I told my parents about my tummy aches,  I was informed that I was okay now...and told to go and play! 

We can help support you in whatever you  choose to do of course, but,  just do not do anything unless your really sure of yourself and all the possibilities. Asking about experiences is a great first step. If adjusting and accepting your stoma and developing a routine is what you need to do, then give it a good long try. It took me over a year to get to where I am today. We can be here for you in whatever your choice is.  Reversing, in my experiences is not something I  would do. When my pelvic floor gave out on me, my stoma has been  the best option for sure. I am no longer tied solely to the big white porcelain telephone in my bathroom or to  the house! lol! I have a freedom I never thought possible and even tho a tad shoddy right now, my health is so much better too. I still get Bowen pain when I eat but the other areas of my bowel are at least bearable. With the exception of blockages.

I hope you can figure things out sooner then later. Maybe try making a pros and cons list too. We are here for you! All the best of health to you, its overdue! 

Linda


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Readann
(@readann)
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March 12, 2020 1:02 pm  

@jtvt

Thank you for your reply. I don't have a colon, so the question is to I keep my ostomy or do I do IRA. I think my SMA syndrome is under control, and I do not get blockages at the stoma level.

 


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Readann
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March 12, 2020 1:05 pm  

@veganostomy

My surgeon and I did talk about it the day after I posted this. His thoughts are like mine -- it could be great, it could be awful. We just don't know what would happen. But he also said, no more surgery. I have one more surgery I'm 'allowed' and then no more. I wouldn[t get another opinion (my surgeon is amazing, -- actually, I believe we live close to one another, but went to different hospitals based on your posts). But I agree with his expertise that four abdominal surgeries should be a limit.

So, basically, if I went for IRA and it was worse and in a year or whatever I couldn't take it, I couldn't go back to the ileostomy.

 

 


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Readann
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March 12, 2020 1:10 pm  

@dlkfiretruck

 

Linda, thank you so much for the reply. So you first had a j-pouch and chose a stoma instead? What was the reasoning?

You're right that I am striving for normal, but I don't need regular normal. I just need to function throughout the day. I don't need a 10/10 magical life, you know?

I did end up meeting with my surgeon after I posted this, and we talked more. He expected I was going to ask about it because of the prolapse and was prepared. His answer was one more surgery. I could do it, if I wanted, and he doesn't know the outcome and neither do I. It might be amazing, or awful. But he said, that's it. If we reverse it, we aren't going back to the stoma. Even though I could get another opinion I wouldn't because I love him and trust him. He's been a doctor of mine for about 5 years, and gives me the best care. I would just be afraid I would do the IRA and it would be worse. 

I have made a pros and cons list! The unfortunate side is I can't write much on the IRA side since the outcome we just don't know. THere are a few things that stand out on it, though. But others on the stoma side. I did come up with a plan (I can share but dont know if this is boring or drivel), that I am going to do, but still thinking about this in depth

 

 

 


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