Scared

[Cruise]

Hello
I am having a hard time.I have had crohns 23 hard years. Have had 6 resections last being 7 months ago.Had a temporary ileostomy 3 years ago always leaked ,had copioumts punts of diarrhea and depression.I have had every med,have been on multiple studies, allergic to remicade and Imuran.had stem cells.Presently on humira met ogre Kate,prednisone vitb12 tyl 3 gravel......not well.I know that an ileostomy may be my only choice ....can it be better than I had experienced?

 

[Crohn's 35]

:welcome: Cruise. Wow that is alot of resections. Unfortunately every time we have a resection, the Crohn's can come back faster and worse. It is the reason to avoid surgery if at all. I have had 2 resections and avoiding a 3rd. I too am allergic to or react to most drugs. Flagyl has been my saviour at times. I am surprised the stem cells didnt work, but just recently the news says it may not work for everyone.

I have never had a bag but there are many who have and it was the best choice and living a normal life. What country are you from, you say gravol and that is a Canadian product.

Keep us posted on how you are doing!!!

 

[Nyx]

I'm sure having a bag can be a good experience once you find the right appliance and get a routine down with it. I have a permanent colostomy and it was a life saver for me. I'm not on any meds currently, I eat what I want, I play with the kids, swim, exercise, and have the life I had pre-Crohn's. Just because you had a hard time with your ileo the first time, doesn't mean you have to this time if it comes to that. There is so much help out there to get you through it that even if you have problems, there is hope.

Good luck to you!

 

[glum chump]

I agree with Cindy. I had leaks/skin sensitivity when I first started out with my ileostomy, but things have really hit its groove now. I worked with the nurses to come up with the right appliance that works for me and haven't had a leak since. My initial leaks were likely due to the wrong appliance, and needing to figure out how to get the appliance to work when my body was changing after the ileostomy (basically, I mean I was getting fatter!).

I'm on a medication vacation as well, and haven't had any symptoms. Living my life and loving it. I enjoy being able to eat all kinds of foods again, the freedom to go out without worrying about bathrooms, no pain/cramping, and a lot of the other issues related to Crohn's (joint pain, recurring cysts, fistulas, abscesses, etc.) are gone.

If you were to go the route of ileostomy, my suggestion would be to try all the different products to find one that works best for you. And to figure out what the optimal change days are to prevent leaks. I used to 'picture frame' my flange when I was getting leaks, but don't do that any more.

I wish you all the best as you try to figure out the best decision for you.

Cheers,

Kismet

 

[Terriernut]

It CAN be a bad experience, but I assure you, with the help from stoma nurses and the help you get on here, we can usually sort things out! In fact, most of us, with help from the folks on here, will tell you our stomas are the best thing that ever happened to us! And when they misbehave...we can make you laugh, and get it sorted.

I'm so sorry things have been so bad for you!!!! I really hope that an ostomy may give you a break, and the life you deserve to have. Free to do what you want when you want!!
:kiss: