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Advice on reversal and general advice

U

Umzy786

Hi my name is umair
I am 20 years old and I got diagnosed with Crohn's disease when I was 15 jus before gcse, I've had a bit of an interesting journey these last 5 years up and down. For the last 6 months or so i had been doing well until randomly last month my large intestine perforated and I had a emergency surgey, mine was a bit complicated as a) fluid was leaking and spreading everywhere and b) it was fr
The sigmoid colon.
Anyway I've had the sigmoid colon removed and got a stoma bag. The rectum canal is still in place as is the rest the large intestine. I have little inflammation in the small intestine which I am getting treatment for soon.
I just wanted to know about the reversal ? Has anyone with crohns had it and how have they been ? As doctors say people with crohns shouldn't get it.
Also jus generally any tips with the stoma ? Like anything as I'm new to this all

Thank you
 
Nyx

Nyx

Moderator
Hi Umair,

Your story is exactly the same as mine :) I don't have any advice about reversal, as my stoma is permanent as I had too much damage at the rear end to reconnect. As for advice, have a peek around the forum, there is a lot of info about bags, care, and even some humour. If you have any specific questions, feel free to ask, we're a friendly bunch and will try to help you out any way we can.

Welcome to our little group!
 
annawato

annawato

Moderator
Staff member
Hi Umair, welcome to our group. I had my first stoma reversed but pretty well immediately got sick and a year and a half later had to get another one. But I think for most people reversals are permanent. It just depends on how aggressive your crohn's is and what part of the bowel it is attacking. Since getting my second stoma I have developed bottom problems which I hadn't had before, my disease is mainly in the small intestine. It sounds like you may be talking about reconnection and getting a j pouch? These are not recommende for people with crohn's as it tends to appear in the j pouch. They are safe for those who have UC though. So basically it depends on individual circumstances.
Have a read of a few of the old posts- the first sticky called good advice for you gives some helpful tips for having a stoma. And of course any other questions just ask away. There are loads of friendly people here to give advice, give a laugh or provide a shoulder to cry on.
Once again, welcome to the club!
 
U

Umzy786

Nyx said:
Hi Umair,

Your story is exactly the same as mine :) I don't have any advice about reversal, as my stoma is permanent as I had too much damage at the rear end to reconnect. As for advice, have a peek around the forum, there is a lot of info about bags, care, and even some humour. If you have any specific questions, feel free to ask, we're a friendly bunch and will try to help you out any way we can.

Welcome to our little group!
Click to expand...
Thanks for the help its nice to know that there are other people and your not alone :D in my case I saw the consultant yesterday at st marks and he said to me that ATM the back passage the rectum canal is slightly narrow but well only have a better idea giving it time to heal and the reviewing in jan.
 
U

Umzy786

annawato said:
Hi Umair, welcome to our group. I had my first stoma reversed but pretty well immediately got sick and a year and a half later had to get another one. But I think for most people reversals are permanent. It just depends on how aggressive your crohn's is and what part of the bowel it is attacking. Since getting my second stoma I have developed bottom problems which I hadn't had before, my disease is mainly in the small intestine. It sounds like you may be talking about reconnection and getting a j pouch? These are not recommende for people with crohn's as it tends to appear in the j pouch. They are safe for those who have UC though. So basically it depends on individual circumstances.
Have a read of a few of the old posts- the first sticky called good advice for you gives some helpful tips for having a stoma. And of course any other questions just ask away. There are loads of friendly people here to give advice, give a laugh or provide a shoulder to cry on.
Once again, welcome to the club!
Click to expand...
Wow you really have been through alot ! I'm really sorry to hear that I hope things work out for you !! I'm not sure it's a j
Pouch they were saying ? Because he was talking about reconnecting the rectum canal with the rest intestine.

Regarding inflammation the surgeons did see some crohns in my small intestine and am currently waiting on a scan so they can see anything and any sign of active crohns I will be moved to infliximab
Any experience with that ?
 
U

Umzy786

Nyx said:
Hi Umair,

Your story is exactly the same as mine :) I don't have any advice about reversal, as my stoma is permanent as I had too much damage at the rear end to reconnect. As for advice, have a peek around the forum, there is a lot of info about bags, care, and even some humour. If you have any specific questions, feel free to ask, we're a friendly bunch and will try to help you out any way we can.

Welcome to our little group!
Click to expand...
Sorry again but I do have one question, around my stoma itself as it still varying size but around it I have these small nodules the nurse called it that bleed when I touch it with anything! Any advice I can use about how to get rid of them or something the nurse gave this thing you stick around stoma and then bag sticks on top and it creates a barrier between bag and stoma. The problem why I can't use that is my stitches opened and it's right near stoma so
I got this massive opening which I'm
Having to get packed and bandaged lol so dealing with stoma is long ! But yh any advice on the nodules
 
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