Has anyone had a stoma reversal?????

[loiseileen]

Hello all,
My surgeon is suggesting i could be ok to have my illeostomy reversed after 3 and a half years.
He is putting me under no pressure whatsoever, but is saying all looks good in all places
Very wary/nervous about it tho. Have got very used and comfortable with it.
Will be a shock to the system to poop properly. Im 37 and am swaying to the idea of giving it a go and see what happens. Would be great to be off the Humira and Methotrexate which i currently inject every week to control the Crohns related abscess's i have suffered with over the years.
WHAT WOULD YOU DO??
Any stories/advice/suggestions you could give me would be great.
Many thanks
Chris

 

[moogie]

I had my illeostomy reversed after 6 months. Not sure what I would do after so many years. I guess it all comes down to how you are feeling. me personally I hated having my 2 bags and prefer pain to getting another one. So i would go for it, but that's just me.

 

[shamrock15]

I had a reversal four years ago. I fully agree with how convenient it is to use the bag, however, I will also say that I am glad I did the reversal. Things have been good without the bag, and it didn't take me long to get used to not having it. I wouldn't want to comment on coming off humira. I am on remicade now, and I do think it helps keep things under control so that you may not require the bag again.

 

[2thFairy]

You'll still need to take Humira and methotrexate even after reversal.

 

[Susan2]

Did the surgeon say that you would be able to come off the medications? That seems unlikely, as reversing your ileostomy, as far as I know, will not do anything to control the abscesses.

Do you have a gastroenterologist as well as a surgeon? Is so, it might be worth getting a second opinion before you make a decision.

 

[Christie]

hi I am also 37 and had a reversal in Feb this year after having mine for 2 years, it was the best thing I have ever done, I am on Infliximab and still have it every 8 weeks although Im waiting for a mri to see if there is any disease there and if not I maybe coming off it, good luck x

 

[Tenacity]

As long as you don't have any active perianal disease or fistulas, then it is entirely up to you to get it reversed. I once heard of a lady who had a successful reversal done after 13 years!

 

[loiseileen]

The active Crohns around the entrance and first inch of my stoma is causing the abscess's to appear. After many scans, scopes and cameras it appears that this is the only area of active Crohns.
He explained that by removing the small area of inflamed bowel i could (possibly) be Crohns free and be re-connected as my back passage is clear too.
I know its all ifs and butts (ha ha) but he sounded very hopeful about coming off or drastically reducing my meds.
Im seeing my Gastro guy in 2 weeks so i will have a decent chat with him them.
Thanks for all your views.
Glad your doing well Christie. Its great to hear stories like yours. xx

 

[shalinico]

Hi there,

This is my first post in this forum. I am from India.....diagnosed with crohn's disease in feb 2012 and had my ileostomy surgery on june 2012, I have only part of my descending colon and sigmoid colon left, my small intestine is fine. I was with stoma bag for just 3 months and had my reversal in sep 2012. I was so happy on my reversal as I had a hard time with the stoma. Wished my reversal would be my last surgery, but god had other plans.....I was perfectly fine after my reversal, but I had to undergo another surgery to remove adhesions which caused obstruction in november 2012 during our diwali eve......3 Open bowel surgeries in 5 months window....feeling low at times...... am currently on pentasa 3 gms and azoran along with vitamin supplements...


Good luck on ur reversal....

 

[2thFairy]

Welcome to the forum, shalinico!

 

[Tenacity]

Yes, welcome to the forum!! It sounds like you have really had a very tough year!

They say that right in the beginning when you are diagnosed, is sometimes the worst because by the time they figure out what is wrong, you are pretty sick. And then, in the future you know what to look for.

Given all you have been through, I am surprised that they only have you on Pentasa and azoran. Do they have any of the anti-TNF meds over there like Remicade?

I was also wondering if it is true that in India everyone boils their milk? Sounds like a strange question, but there are some that believe that due to your diet over there, Crohns is not as prevalent. I was just wondering what you thoughts were about this.

Three open bowel surgeries is a lot in 5 months. How are you now? Did they manage to get everything under control?

I am so glad you found us. There is plenty of support and friendship to be found here, and people who can share in your feelings.

 

[Hobbes650]

You'll still need to take Humira and methotrexate even after reversal.

2th fairy makes a good point. I was told that now with my Crohn's dx, I'll be taking something the rest of my life.

I'm happy that all looks so good! The nice thing with the bag and Crohns is that if/when I have another flare up, I don't have to worry about any incontinence. If you do have the reversal, I bet you'll have some incontinence because you haven't used those muscles below in a long time. I guess it really depends on how much the surgery and recovery will inconvenience your life. There are certainly some valid arguments either way you choose. The downside of course is if something goes wrong (whatever that could be). I like the "if it's not broken why fix it approach" and would hate to go through all that. By "all that" I mean for me it would be a lot since my bum has closed up and would need to be reopened- I can see that taking a while after surgery to sit down comfortably.