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Crohn's Disease Forum

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Jan 18, 2014
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Hello everyone,
I was diagnosed with crohn's disease in August of last year and have been struggling for a while with it. I keep getting infections and all the medications I'm on are driving me crazy (prednisone). I was considering looking into getting an illostomy but I feel my doctor isn't listening to me. He feels my crohns can be controlled with medication. I still feel pretty miserable at times and I don't like to show it. Especially those days where you feel like you have to go but you end up sitting on the toilet for a while and nothing happens. Anyways my questions were:

1. For those who have a stoma, are you off all medications?
2. Is life easier for you?
3. My doctor said stomas are for people who aren't responding to the medications only. Is that true?
4. Am I better off talking to a surgeon?
 
Hi. I've had mine for almost 30 years. I wasn't responding to any treatment. I was off meds for 20 years. I've been flaring for awhile now. 2 surgeries and back on meds. I wouldn't go back. It isn't perfect but it did give me my life back. It's important to remember it isn't a cure.
 
Hi and welcome to the Forum!

I'm sorry that you've been struggling since your diagnosis, you're so early on in your journey, have you been on any medications other than prednisolone? There are so many med options that can and do work without the need for surgery.
Personally, I had a temporary Stoma in order for a fistula to heal.

To answer your questions.

1. For those who have a stoma, are you off all medications?

I wasn't on any medications when I had my Stoma and haven't been for over a year. However I have had a flare up these last two months and have had to wait until after my most recent surgery (last Monday) to have anything.


2. Is life easier for you?

A Stoma can make your life easier, but it is a big change. It can take some time to sort out in your head especially related to body image.
It also means that you have to factor in changing your bag, the possibility of leaks etc. Yes, it can make life easier in some ways but can be more difficult in others.


3. My doctor said stomas are for people who aren't responding to the medications only. Is that true?

I was told that I had to have surgery as I had tried and failed most of the strongest medications available. I didn't have an option regarding my Stoma, I had to have it.


4. Am I better off talking to a surgeon?

I would think very very carefully about surgery. My surgeon always told me that he would never do surgery on someone if he thought that a gastro could try something else medication wise as there is always risk involved in any surgery; general anesthetic, wound infections, leaks, bleeding etc.
I would personally say that a surgery and/or a Stoma is the last resort.

Have a good chat with your gastro about how you're feeling. I would think that they would prefer to try you on some other medications first before surgery. Once you have one, you very often need more and more, take it from someone who has just had surgery number 4 in 15 months.

Hope that helps, obviously it's just my opinion, but I really would consider surgery as a last resort.


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I know crohns can't be cured unfortunately. This disease is so new to me and I'm stilling learning.
 
Yeah sorry I'm on prednisone, 6-mp,remicade infusions, mepron, Omeprazole, zolpidem (for insomnia) and ondansetron (for nausea). I tried to switch over to hydrocortisone but I started bleeding really bad so my GI switched me back to prednisone.
 
Hi jos,
Sorry to hear you are having a crap time. I had an ileostomy a year ago following emergency surgery so here goes with trying to answer your questions.

I am on more medication now than I wAs before. I now take azathioprine to try and sort out the remaining crohns in my large bowel. I also occasionally take pred if I'm in a flare. These have replaced numerous ibs remedies, a bucket load of solpadeine, anti depressants ( doc thought it was causing my stomach issues)
And a whole load of smell to get well herbal crap pushed on me by friends and family who thought they knew best!

Life has been better in the sense that I now don't have anywhere near as much pain that I used to suffer. Life has been a challenge being a man in the prime of his life almost not being here and now having to walk round with a bag stuck to my stomach next to a scar that runs all the way from above my boxer short line to just below my ribs. I also now have an insatiable appetite which pleases me immensely.

Stomas aren't just for people in which meds aren't working. I believe it falls into two categories, first is the option of a planned ileostomy or such like to improve the general health of a being. It's controlled, planned and managed. The other is a last ditch attempt to keep someone alive. In my opinion both are a good idea.

You may be better talking to a surgeon, a gp in my opinion gives you about 7 minutes of their time before giving you a diagnosis and a prescription. Show him a sore throat and he will give you paracetamol, show him crohns and see if he spots it!

All in all don't be scared of what's coming or what's not, manage the best you can, get the best advice, trust in your own body!

Just read my post back and realised it almost sounds like a rant or a vent, it wasn't meant to be and I hope my answers give you an insight!

Good luck
 
The important thing to remember is no cure yet?there,s loads of options before surgery,different meds,alter your diet and exercise,all help.i,ve had lots of surgery all orthepedic,I love the phrase minor from drs,it is for them there not having it!
Treatment wise no one knows what the future holds there's research programmes all over the world including a big one funded by the EEC in London,lots of money being flung at it some will stick.all the best good luck
 

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