Newbie and in need of advice

[Clarabell]

newbie and in need of advice

Hi everyone!I thought I would leave my story as I have just recently found this site as I really felt I needed somewhere to talk where people understood my story.
I am 27 years old and have had IBD for seventeen years now:ybatty: .At first I was told I had colitis, at fifteen I had stoma for a year which was reversed and I have had an anal pouch until now. I have had the usual day to day problems that come with living with IBD brings but have always just got on with it until now.
Over the past few years my doctors have came to the conclusion they got it wrong and I have crohns!This is due the repeated fistulas that keep reoccuring,the doctors want to start me on remicade and azotheprine but due to constant infection they havent had the chance.:ybatty:
While some of my doctors want to give the meication a chance some are already talking about a colostomy bag again but for life this time!I know this isnt the end of the world but I am not dealing with it very well.I always end up in tears or jst refuse to talk about it.I know I am strong as you all know you have to be with this disease.I just want to try everything before I think about anything else!
At the mo I am a student nurse so throwing maself into study but i no in the back of my mind I am not coping very well,my family are very supportive but they dont understand,not really.
Clarabell xxx

 

[kenny]

I had to do a couple of months of antibiotics with a perc drain hooked up to my abdominal abscess. Once the infection was dealt with my abscess kept draining GI material so I had to get surgery to fix that. I ended up with a second drain and abscess and again the GI material started coming out once the infection was cleared but this time they pulled the drain and used immune suppression to help close the tiny fistula causing it.

I hope you can get it fixed up without surgery but I suppose it depends on whats up with the fistulas. There are some people here who seem pretty relived to have the colostomy but I share your concern. I hope to avoid one for as long as possible. But when things start getting bad again perhaps it will be a relief to end a lot of the other troubles that go with having Crohn's

 

[Astra]

Hi Clarabel
and welcome

This is a toughie! If it was me, I'd try all meds first, people on here have had marvelous remissions with Remi. I would leave surgery as a last resort when all else has failed.
glad you found us, there is lots of support on here, and check out the thread Remicade club.
lotsa luv
Joan xx

 

[Hedgehog]

Hi Clarabell, and welcome.
You've been through a lot for a young woman. I agree with Joan - I think I'd be inclined to try the medication before surgery.
I think the idea of a stoma is worse for young folks like yourself. I wouldn't mind if it got rid of my symptoms but I totally understand why it makes you miserable. There are some people on here who love their stomas though - so I hope they give you comfort and inspiration.
Gail
x

 

[Astra]

Hey Gail
you're hot baby!
xx

 

[Hedgehog]

Hey Joan, I finally got an avatar! Yay!

I'm much hotter on the inside...like in the gut area for instance :ylol2:

Gail
xx

 

[Guest]

hi Clarabell, welcome to the forum

really sorry to hear everything you've been through - and it's a lot!

i think i'd go along with Astra's thoughts here.. try all the meds offered, and if they all fail, then maybe consider the surgery. there is also LDN (we have threads here on it if you want to search for info) - but this is not an easy drug to obtain for Crohn's, yet.

i had stoma surgery when i was 23, and it's permanent... although there are days when i wish i was 'normal' and it wasn't there, it really hasn't stopped me doing anything over the years, and i know it saved my life, so it's not as awful as can be imagined.

any questions or anything you feel you need help with, just shout - someone will always come along and help you out, if they can.

 

[ameslouise]

Hi Clarabell and welcome!

I'm also a former UC- now Crohn's -trying to save my pouch - patient!

I hope you can get on the Remicade - many folks have had a lot of luck with it helping with their fistulae.

Good luck! - Amy

 

[Rob]

Welcome aboard
sorry to hear of ya situation
I agree go the medication route first if you can as surgery option will always be there

I was faced with either a permenent illostomy bag or go on a new drug trial
I went the trial option, it's been slow going but considering how bad I was is say was a good decission
things for me are in the improve slowly, but still if it does fail I can still go the other route, touch wood I don't need to

good luck

 

[ataloss]

Hi Clarabell! I am also new here. You have been through so much already. And I like you find that family tries to be supportive but they just don't get it. I have found everyone on here to be absolutely wonderful, and I am sure you will find the same. This new stuff you have to go through sucks. I agree with everyone else....I would try the meds first before deciding on the surgery.

 

[Dexky]

Hi Clara, I have no advice on meds vs stoma but I will say I work w/ a man who has had a stoma for years and I didn't know until we were talking about my son last week. Of course I've never seen him naked haha.

If you're concerned w/ appearance of the stoma, check out Kello's pics in her thread.

 

[Nyx]

Hi Clara...I just recently had a colostomy (it was my 5 month anniversary on Thursday) and I have to say that it saved my life. But, I would of course try the meds route first, as having a permanent stoma is life altering to say the least. There are ups and downs, but fortunately for me anyway..the ups have way outweighed the downs.

Good luck...hope they get you sorted out soon

 

[Clarabell]

thanks everyone for the great advice.am just taking things day by day.defo going to try all the routes available to me first.just sometimes get down heartened with my docters and how slow things are going just now.Its a big relief though to have you all to talk now so thanks xx

 

[markbills85]

Best of luck to you and welcome to the forum, Im 25 with crohns its a tough age to be dealing with all of this!!!! lots of support here

 

[dreamintwilight]

Welcome, Clara! You've found a great group of people here to provide you much support and knowledge