Is this op possible ? Would it help me ?

[Jenny06xx]

I hope I don't offend any one here by asking this but I'm pretty miserable and desperate !
I have crohns disease recently diagnosed but suffering 7 years I also have bile salt diarrhoea due to gallbladder removal don't know if it's connected or what, I can't handle the pain and diarrhoea anymore and was wondering can I ask my gastro/surgeon for a full small and large bowel removal so I can have a waste bag ( not a clue what this op is called or the bag sorry or if it's possible ) my main hope would be no more pain and diarrhoea or would I be worse off ? I'm at my wits end here and need some advice. Even if I was Mildly better that would be great !
Jen XX

 

[mario]

Hi Jen
A temporary colostomy or ileostomy bag is really good for giving your gut a rest. I had the inflamed/diseased part of my intestine removed then a bag for a couple of months. I have been pain free ever since (18 months). I am surprised your doctor has not mentioned this to you. Many people have a temporary bag and those with permanent ones are often delighted with with the results. Look through the threads. If i were you i would make an appointment asap and ask them to consider this. Good luck. Let us know how you get on!!

 

[Jenny06xx]

I have an app on the 29th to go on imuran or 6mp so I will ask thank u sooooo much so it's called an illieostomy and can be tempory or permanent ?
What's the after effects like does it leak etc will I still need lomotil or codeine etc to slow down output ?
Stupid question here lol but basically will I only go to poo through the bag there's no way it could leak out the other end ? Sorry so many questions
Jen

 

[katiesue1506]

You may be able to remove part of it, but removing all of it would then cause you to have "Short Gut Syndrome" and you would have even more of a hard time absorbing nutrients and staying hydrated.

 

[hopeful]

Bile salt diarrhoea is treated with cholestyramine substances - have you ever tried those?

 

[Jenny06xx]

Yeah really hurts my stomach

 

[Jer's Girl]

You should read the stoma subforum. There is a lot of good information there about ostomys. Mine was temporary but it saved and changed my life! Good luck deciding. This disease is really a personal journey for each of us, and no one choice is right for everyone.

 

[Jenny06xx]

Thanks all
I went to my gp this morning, he couldn't help at all I think he thought I was mad lol he said discuss it with my gi which I will on the 29th, he gave me more lomotil but said I can't stay on them long term use them sparingly ( all 20 of them lmao )
I know my large and small bowel is diseased/inflamed with thickening , but from my pain I know my small bowel or a section of it is the worst so if that is taken out and I have a temporary illieostomy or say a resection do u know roughly how long it will take for these areas to become bad again or will it move somewhere else , could I get roughly a year pain or nearly pain free ?

 

[Guest]

hi Jenny... depending on where the Crohn's is exactly within your small and large bowel, it sounds to me like you could actually be a candidate for a stoma... there are two kinds of bowel stomas (plus a third for urine called a urostomy) - a colostomy and an ileostomy.

the difference between the two is a colostomy is formed from your colon (large bowel) and the ileostomy from your ileum (small bowel).

a straightforward stoma operation will result in you having a bag on your tummy to collect all feces.. there shouldn't be any coming down the back passage afterwards, but there can still be activity there with mucus.

stoma surgery is performed for many reasons, but very often to give the intestines (and the patient) a rest.. some are temporary, some are permanent.

there's absolutely no guarantee that Crohn's won't reappear somewhere else once it's removed during surgery, and there's no predictable time span for this either - but i can tell you that i had all my large bowel removed in 1986, and i had 20+ years Crohn's free before it reappeared.

i would suggest that you write down all your thoughts and questions about surgery before the appointment, take the notes with you, and tell your surgeon you're seriously considering, and are mentally prepared for, surgery - and see what he thinks your options are. get as much info as you can.... if he sounds like he's in agreement, you can then contact your hospital's stoma nurse team, and arrange to have a chat with them to hear the non-surgical side of things too. getting as much info as possible is always a good thing.

good luck with the appointment - please let us know how it goes.

 

[hopeful]

There is a test you can do to differentiate between inflammatory bowel disease and non-IBD conditions (such as IBS etc) - and its called a fecal (stool) calprotectin test. Its very specific for IBD, and is slowly becoming the standard in the U.K. It specifically measures intestinal inflammation.

 

[Jenny06xx]

Dingbat thank u !! That is exactly the information I needed which I couldn't find all in one post I've been searching for days lol
I know it's a very big descision and I won't jump into it but it is nice to know my options thanks again XX
Hopeful
I have been diagnosed with crohns disease, through stool tests a ct scan and a colonoscopy and it is definitely my crohns flaring as I've just come out of hospital and back up to 40mg pred x