I don't know where to turn

Hi Jessica!

I have never tried the in-person support groups either. They are few and far-between anyway, even in a city like Los Angeles (actually I live a little north of the city).

Anyway, I have been looking on these message board sites for years, and someitme shtey help. Lately, they have helped a lot since I too, am having surgery this April.

I have had Crohn's disease since I was 15 (now 29) and never had surgery yet. Now I am to get a temp. ileostomy with setons (samll rubber band-like things) placed in the tract of several peri-anal fistulas, plus a possible repair to a entero-vesicular fistula (that is a fistula that leads to the bladder or ureter).

I have lived with the fistulas for many, many, years. I find them the hardest part of Crohn's to deal with. First, it is difficult or impossible to talk to others about it (seems so gross and embarrasing) and secondly, they cause so much pain and are just plain annoying over time.

Anyway, I am glad you have decided to get surgery, since it sounds like you may past due, like me. Let's stay in touch so we have someone to go through this together?

Thanks,

Nat

hi there i was terrified of having a stoma but it was more psychological than for any other reason. The reality of a stoma for me is FAB. Not running to the bathroom or having incontinent accidents or sore rear problem and after surgery other folks still running to the loo made me feel SOOOOO greatful post surgery i wasn't in the same boat. it does take a while to get used to and finding comfy cloths the first few weeks is hard work but if you try and keep a positive attitude and share your feelings it will make it easier for you
hugs
chip girl x

Just know that it is normal. I went through the same things, hated the stoma, hated the thought of changing it, hated everything about it, and that my life revolved around it.

Some people adjust faster than others, and some need more time. You may want to talk to your doctor about it, maybe get a referral to a therapist that deals with this, and yes there are therapists that deal with this.

If you live somewhere where you can't find one, all you can do is wait it out, and try to help yourself. My best advice is to start getting out and doing things. Go to the local park and take a walk. Go take a horse back riding lesson. Go shopping. Do all the things you weren't able to do before the surgery because you were tied to your bathroom or were in too much pain. It will all start getting easier. It will finally dawn on you that this may be worth it.

Another thing, people will not know you have one unless you tell them. I worked with people for years who never knew. The noises start to get less and less, if you feel a "burp" just put your hand over it to muffle it, but you'll soon realize that no one else notices, and that you hardly make noises anymore. Make sure you have a good supply of M9 drops and go out into the world and be a part of it.

It will get easier, it will become a normal part of your life, just another thing to do in your personal hygiene routine.

If you need to talk to someone, I'm here, lots of people are here. You can e mail me privately also.

Good luck, don't be too hard on yourself, but make yourself get out into the world.

You can hit the envelope under my name to the left of my post, that will get you to my email.

M9 are drops you can buy, made by Hollister, that you put into your pouch each time you emty it, and there's no odor. You can go anywhere and no one will know.