Crohns disease

[Bekind19]

Anyone with crohns disease/colostomy bag want to chat?

Anyone?

Hello I have Crohn's!

Hi, I have had crohns 18 years wondering if it ever gets any easier.

I've had it about 15 years, to begin with it was awful while undiagnosed, culminating in emergency surgery to treat a perforated ileum, thankfully haven't had any more surgery. I have good times and bad times. I presume you have had surgery?

Yes I've had 5 surgeries. I had colostomy bag 8 years ago that was suppose to be reversed but couldn't be as the damage to bowel was too bad. Have had so many flare ups the last 2 years it seems like it's never ending.

@Bekind19

Yes I've had 5 surgeries. I had colostomy bag 8 years ago that was suppose to be reversed but couldn't be as the damage to bowel was too bad. Have had so many flare ups the last 2 years it seems like it's never ending.

I'm so sorry what treatment have you tried so far?

I have tried steroids I've lost count how many times. Infliximab, methotrexate, sulphasalazine, mesalazine, humira over the last few years. Before that lots and lots of different treatments too. Is yours under control now.

@Bekind19

I have tried steroids I've lost count how many times. Infliximab, methotrexate, sulphasalazine, mesalazine, humira over the last few years. Before that lots and lots of different treatments too. Is yours under control now.

I'm under control on azathioprine although had a stint in hospital in December with IV steroids for a few days and a month of oral prednisone following this. Have weirdly been completely fine since then! I definitely have peaks and troughs. There are some new meds available now that may be worth a try if you can get prescribed: Stelera Cimzia Entyvio - this may be a good one for you if it's mainly large bowel

I would also wonder about biologics schedules (some people need stronger doses, more frequently) and should be taken with azathioprine or methotrexate to prevent antibodies developing.

I have had 40 years of Crohn’s.

To answer your question, some aspects do get easier. For me, these are:

• Telling other people - it is much less of an unusual condition now.
• Food issues - intolerances are better catered for these days.
• Understanding the limits of my body, which sometimes means declining invitations or dropping out of things last minute. A few decades ago, I would have tried to just push on, regardless of health.

But some things are absolutely not easier. For me, they are:

• Repeated operations
• Reduction of treatment options as my consultant steadily removes things from the list of potential treatments: medicines and surgeries that used to work, but don't anymore.
• Each year I seem to add new related conditions to my list - skin issues, arthritis, eye problems, fissures, fistulae, stenosis, ulcers, prolapse.

Thanks for starting this thread. It's good to not feel alone.

Thank you both so much.
I have been trying to discuss new treaents for a while now. Really difficult to get appt in current conditions.

I too have had other complications. Stenosis, eye problems, mouth ulcers, fistula, joints the list seems never ending. I have had a parastomal hernias repaired. I developed another one 3 years ago and still have that. Really bad problems with colostomy bag fitting now because of the hernia too. Thanks for both replying it means alot.

There's a lot of online support available - Crohn’s & Colitis UK, Instagram groups.

I find these really helpful. It's great to see people on social media showing stoma bags and talking about their condition. It just normalizes it when you realize there so so many others going through the same as you.

The stigma element has changed so much. Crohns used to be my guilty secret. Now I just tell people.

I'm still in recovery from a very recent surgery. Grateful to be treated during this pandemic. Wishing you lots of good health!

Oh yes I am in several groups. Was having a really bad day when I posted. How are you feeling after your surgery. Get well soon 😀

That's sweet if you to ask when it's your thread!

I'm ok thanks, came out of hospital at the end of last week. I've had a lot of interventions especially in the last two years - repeated surgeries and all the in between colonoscopies, MRIs etc.

I tell myself each one will be the last for a while. You just have to roll with it.