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Crohn's Disease Forum

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AnneMarie

Joined
Jul 23, 2010
Messages
22
Hi guys,

I was diagnosed with Crohns at 20 years of age and for the past four years have had 9 operations for a fistula which just keeps getting worse. I have now been advised by my Surgeon that my best option is probably to go for a Stoma. This has been my worst nightmare for many a year.

Can anyone pass on their thoughts/feelings on this please if you have gone through a similar situation.

Thanks very much,
Anne Marie:yfrown:
 
Hi AnneMArie - sorry to hear about the issues....have you tried any of the biologics to help with the fistula?.....I dealt for about 2 years with fistulas that would not heal - finally got my Dr to start me on Remicade and that almost immediately took care of hte problem.....
 
Hi there

Thanks for coming back to me so quickly. I spoke with my Consultant about Remicade (Infliximab) last week and was advised that due to the amount of infections I have relating to the fistula that this drug could kill me. This is therefore not an option.

He has given me four options of leave it alone, try the same ops again, try and open the fistula larger and see how it goes or go for the stoma. To be honest, although the thought of a stoma terrifies me I would love to have some life back as this has held me back from things for too long.

Thanks again,
Anne Marie
 
Hi Anne and welcome!! Look up users Kello82 and JeffD. They are both young ostomates. Jeff's is only a few weeks old and he's beginning to get the hang of it after some initial problems. Kelly has had some problems with hers but I think it's mostly skin issues around the ostomy now. There are several others as well. Nyx has one and likes it so much she calls it Oscar and her tag line on her posts says she's "loving" life with Oscar:). There's a man on here and, I'm ashamed I can't call his user-name, but he lives a very active life as a paramedic with his ostomy. I'll go find him and edit my post. The point is, it's not the end of the world. For some of these guys, it's been a whole new beginning!!:)

It's Semicolon306
 
Last edited:
I am sorry to hear about the problems you are having! I had surgery in Feb and I had three fistulas at that time. Right now one is not healing like it should but the Remicade is helping me! Sorry to hear it isn't a drug you are capable of taking. There are alot of people on here with stomas that can offer you great advice and support. People who are living life again so that's a positive way to look at it! Sorry I can't offer much more but you have come to the right place for advice and support. The people on here are amazing! Good luck on your journey and there are many people here to back you up!
 
Hello Annmarie, welcome to the forum! I feel so bad for you and your situation. It makes sense about your doctor saying with all the infections it could be worse for you. There are many great people here world wide who have stoma's and for many it was a the best route to go.

It is a scary thing when you dont have a lot of information on it, I do not have one, but not say down the road I may have to. I have learned it isnt so bad as we might think.

Glad you found us,many great people to help you. And a few from Glassgow.

Hope you continue to join our community!:thumleft:
 
Hi Anne Marie and :welcome:

I can't add anything to the great advice you've already been given. I'm glad you found us......there's heaps of friendly and knowledgeable people hanging around here, so welcome aboard!

Take care,
Dusty
 
Hi AnneMarie
sorry you are dealing with your fistula for so long, my son has Crohn's and one of his first symptoms was an abscess that turned into a fistula.
We chose not to go the "heavy drug" route, instead we have done LDN with the Specific Carbohydrate diet, and also hyperbaric oxygen therapy.
In July 09 he had a MRI which showed 2 fistulas, one going through the sphincter muscles, so surgery was not an option, the other was a blind fistula that didn't connect anywhere, but was quite long.
The MRI he had done this May showed one fistula gone (the one through the sphincter muscle), and the other one had a much shorter drain tract.
He has had another 30 sessions of HBOT and at his appointment last Tuesday his Dr said that his second fistula is only a crater (no drain tract) and should finish healing shortly - which probably means another few months, but whatever.
This is just another option, not a conventional one, but one that had results for us.
I hope whichever way you go, this gets resolved for you.
 
Thanks

Hi DMS,

My fistula seems to just keep getting bigger. I've had seton sutures in place now for around three and a half years and they're not doing what they're supposed to. Been told that the more they operate the more chance of damaging the sphincter muscle and me losing control altogether.

I don't think we have the same drugs over here in the UK that you seem to have in the States and I'm pretty sure they've had me on everything available as I rattle when I walk (chuckle).

Glad your son is on the mend though and that his life can get back to as normal as possible for him.

Thanks again,
Anne Marie
 
Hi AnneMarie,
I received my ileostomy back in April of this year. Like you, and probably most people, it seemed like the worst nightmare. But once you fist accept that it needs to be done, you go for it, and come out the other side.

Now 3 months later, I've learned its not as bad as I thought. Yes, there are disadvantages, but there are many advantages. Including restored health and freedom.

Plus, maybe yours could be temporary until your fistlula healed. Best of luck to you!
 
Hi Annemarie
and welcome fellow Brit

so sorry you're going thro this, and at such a young age too! I have no advice cos never had a fistula, but glad you found us and hope you stick with us for support wheneva you need us we'll be here for you!
here's a link about LDN UK

http://www.ldnnow.co.uk/

lotsa luv
Joan xxx
 
Thanks for all the help and advice/support guys. Feeling a lot better about things now that I don't feel a "norma no mates".

Got Consultant tomorrow so fingers crossed a wee health fairy waves her magic wand while I'm sleeping tonight and cures all (hhhmmmmmmm)
 

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