New Girl

[louisebudd]

I recently joined the forum as a means to look for advice regarding my condition & thought I'd introduce myself.

My name is Louise & I have been living with Crohn's and ulcerative colitis for the last 20 years.

I had my first operation when I was 20 to remove a section of bowel. Things seem to have settled, but then in 1999 I started getting worse; hospital visits monthly.

Then, I had a major flare-up in 2000 which ended up with emergency surgery to fit an Ileostomy & Mucous fistula. In 2001 I had a reversal. However, in 2002 I was back in surgery again to have the Ileostomy re-fitted & have been living with it ever since. Last year I was back in hospital again, to get an adjustment made to my stoma, as I was experiencing problems.

I'm currently taking Mesalazine, Loperamide & co-codamol (for pain management), but have been on prednisolone in the past.

A recent trip to see my consultant has shown the Crohn's back again, but above the stoma this time. As well as other problems highlighted by a cat scan.

The main advice I'm looking for is ways to manage my condition & suggestions for other drugs which may help.

Hopefully, I haven't put too much & sent you to sleep. But just thought I'd introduce myself.

Any help or advice will be very much appreciated.

 

[outlier]

welcome!!
Thankfully my bowels have behaved and only in my 2nd year. I can't even imagine 20 years of this.

 

[RFarmer]

Hi louise! Welcome to the forum

There's a stoma subforum here, which you might want to take a gander at.

Before I start blathering about my non-professional experiences, and giving unwarranted advice, can you tell give us a little insight towards your future? Like, what does your doctor want to do? Looking at any new meds?

Anyways, welcome Hope you find what you're looking for.

 

[xJillx]

Hi Louise and welcome. There are many more treatment options out now than when you were diagnosed 20 years ago. Have you and your doctor discussed the biologicals such as Remicade or Humira. Many have had great success with these. I suggest checking out the Treatment forum and doing some homework.

I hope you and your doctor can come up with a new game plan that gets you feeling well again. Good Luck!

 

[louisebudd]

I'm seeing my consultant tomorrow to discuss what happens next. Having looked at the forums and seen the various treatments members have received, i will be taking a list with me to see what he thinks. I've never known of alternatives before as I've always trusted the treatment my consultant has recommended. I'll let you know how I get on.

 

[robbo87]

Hi louise and welcome to the forum! Sounds like you've been run through the mill! Sorry I don't have any advice to help you with any ways to manage what you're going through, I also have a mucus fistula and ileostomy and am hoping that my old enemy crohns doesn't return! Hope everything gets sorted for you!

 

[David]

I don't have any additional advice but wanted to welcome you. Please keep us updated! I wish you all the best