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Those with ileo and crohns

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Crohn's Disease
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Posted 5/1/2011 2:15 PM (GMT 0)
Hi

I know I shouldn't be thinking about this now as I am already stressed to the max.

My question is for those who have had to get an ostomy because of the crohns how are your symptoms now is there some improvement over the quality of your life. I know that once Uc is cut out the individual feels great but for crohns the condition can re occur and if it does how is it with a stoma.
I guess I am trying to comfort myself by saying if the worse happens I will still have a life.

I know I am way a head of myself but I've always been one to think of the future and plan. Not the best thing with this tho shocked shakehead shakehead shakehead
Posted 5/1/2011 2:40 PM (GMT 0)
Daunting stop it. You are just going to freak yourself out. Stop!! Lets stick with the here and now and stop worrying about the future. The one comment I will make to your question is the majority of folks do not ever have to have an ostomy. And those few who did say that do feel wonderful because of it. Hugs!
Posted 5/1/2011 3:25 PM (GMT 0)
I have had my ileo for 19 years and has allowed me to have a life again. Pain has gone even though I had it in colon and ileum and even though I have still had flares it is much better under control, flare recently but before that 6 years of remission and even during that flare pain was negligible. If I had my time again I would have had the ileo done every time, no question.

So if, and it is an if, you have to have surgery then it can make things much better and allow people to live the life they want rather than rushing to the bathroom all the time and also reduce the pain depending on where your CD is.

I understand you want to know every option and what that would mean for you but take things one step at a time otherwise you will drive yourself crazy with all the different scenarios.
Posted 5/1/2011 8:03 PM (GMT 0)
Geez kid you are driving yourself Nuts! If you look at the folk on here who have had ostomies they have suffered from this for years and years! Doctors dont just jump in and remove parts because they want to.
Settle down and stop thinking the worst. Im in the same boat as you and have another 8 days befor I get my Pill Cam report. Im looking forward to finding out that there is nothing that needs to be delt with surgically and it can all be put under controle with some medication and diet changes.
You'll do your self more good looking at the sites that talk about Crohns diets and medications. Rather than the radical surgeries sites.
When I had the first fistula surgery there were 4 options.. Fistulectomy, Fistulotomy, Cutting Seton, and if it was too deep in my sphincter muscle a temp colostomy to let the rectum heal. Luckily I ended up with the cutting Seton. I could have made myself crazy worring about what I was going to wake up with.
If you are in too much pain you need to get them to give you some pain meds.. that might help to calm your nerves a bit too. Enough percoset and I dont feel a thing!
Please stop fearing the worst and start looking for ways to make it easier and better.
Hugs
Heather
Posted 5/1/2011 8:54 PM (GMT 0)
Hi i don't think you need to stress about anything if it's not even on the cards yet, but i also think that it is good to prepare yourself for things like that if it could be possible. I'm 19 yo female and i've just has a stoma 4 weeks ago it has been a big improvement even though it's not been long. I feel that the best thing i ever did was prepare myself for it i have managed to deal with it really well and i'm just happy to be well. It also isn't as bad once it's there as you would imagine it to be. Hope that you feel better and don't worry about this unless you really need to.
Hugs Tash
Posted 5/1/2011 11:07 PM (GMT 0)
I'm the same, if something is wrong I like to know all the possible outcomes so I can prepare for them and also decide which one is best for me. That way I am more in control of what is happening to my body and I am involved in the decisions.

There is nothing wrong in being prepared but no point in worrying about things that may never happen. The first port of call for GI is always going to be medication, this can take some time to work and that is why often they use steroids in meantime to speed things up.

Try to think of the positive outcomes and how you can manage this long term and wait and see what your doctor says next week.
Posted 5/2/2011 11:22 AM (GMT 0)
Thank you everyone!

Yes I am trying to prepare my self for the outcomes but also to try give myself sometype of hope something to bring my mental state out of this grim feeling. But non of it is helping all what I see so far is pain. As a young child i have always been scared of sickness. I once met this woman when I was very young who had 3 bags, one for her small bowel another for her bladder and one for an iv transfusion for food. I don't know what she had when you are that young you don't think to ask. And everyday since then I've always Been scared that something like that would happen to me and now it seems that it is my destiny. I know it might never get that bad but the thought and fright is still there.
Posted 5/2/2011 11:38 AM (GMT 0)
Hi Daunting I agree with the others, don't make yourself sick by stressing over it. I have an ileo and have had it now for 2 years and it has changed my life for the better, I was so sick with crohns/colitis that mine was a real blessing, and it has given me back my life and there is nothing you cant do with an ileostomy. It did take me a little while getting my head around it but now I love life as an ostomate. Seriously there is a good chance you may never need this type of surgery as nanners said many don't get this bad. But even if it were to happen I'm here to tell you that life is not over if that were to be the case. Its not necessarily your destiny at all. If you want to know anything else about this I am happy to answer your questions. But remember stress can make your disease worse so take some deep breathes and take care
Doreen
Posted 5/2/2011 5:24 PM (GMT 0)
I have an illiostomy for 6 years now and its really made me in a lot better shape then I was prior. I don't regret my decision what so ever. But your jumping way ahead of yourself. You haven't even tried any of the medications that you should and really need to try before going drastic surgeries like an illiostomy.

So please calm down.... let the doctors do their job and explain to you the benefits of the medications. The benefits outweigh the risks 40 fold easy... and the risks are very rare anyways, the ones I'd be worried about anyway.

So calm down and relax...everything is going to be just fine.... but in no way should you ever get an ostomy before trying medications thats not even in a doctors play book and no surgeon will agree to that, and if they do they'd be putting themselves up for malpractice.
Posted 5/2/2011 10:49 PM (GMT 0)
Daunting. Breath in. Breath out. Repeat.
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