How do you cope?

I'm feeling very upset right now.  I had my surgery for my ileostomy on November 10th.  The reason for my surgery is to allow my fistula repair to heal, so my ilesotomy is temporary.  I developed a severe anal abcess in April 2008, which was not diagnosed correctly until December 2008 when I had a fitula break out of my body.  I had my first surgery in January 2009 to open me up and drain the infection.  My second surgery was in August 2009 to close me up and try to get everything to heal.  I hadn't been intimate with my husband this whole time because it was too painful.  Around February 2010 we had sex and I develop and infection and had another fistula open.  The plan was to have this surgery.  I had so much scarring due to the abcess we had to take muscle from my leg and graft it into my groin to rebuild that area.  The temporary ileostomy is there to allow the area to heal.

I know many of you have seen a great quality of life improvement with your ostomy because you have suffered horrible diseases.  I feel horrible that you have had to live like that and am greatful my situation is not as severe.  However, I have been having a hard time dealing with this.  Since I was released from the hospital I've been back twice because I got sick and was dehydrated.  The first was for the flu and I was admitted for three days.  The second was the day before yesterday for a UTI - just to the ER. 

I can't really indicate why I'm sitting here bawling.  I just really hate my life right now.  I know the ileostomy is temporary, but right now that doesn't seem like much of a consolation.  I'm really the person who any thing that can go wrong, will go wrong.

I am going to go back to work tomorrow.  I was supposed to go back on Monday, but I went to the ER instead.  I guess I'm worried about that too.

My husband is really busy with his job and he recently started going back to school.  He's super stressed with that right now and I hardly see him.  Plus when I do see/talk to him I don't really feel like talking about this stuff because it seems like this is all I've talked about for the last two or so years.  I know he worries about me and I don't want to pile more on him.  It's not like he can really understand anyway.  I guess I just feel really alone right now.

for me, when i get upset (go ahead and laugh its dumb) i look at my shower walls, where my son colored while i was on the toilet, too sick to play with him. I have left it on there on purpose, because i never want to forget why i had surgery.
do you have something like that that you can look at, or think of?

I'm sorry to hear that you lost your dad, too. I can relate to your situation more than you can imagine. I had Crohn's disease in the rectum for the first 7 years of my marriage, and sex was difficult for me.

I also had a fistula that caused an abscess on my right butt cheek and had to have surgery to drain it. They gave me a temporary ileostomy to bypass the area to let it heal. Eight months later, I ended up having my colon and rectum removed, because we could not get the disease under control, and I have had a permanent ileostomy ever since 2006.

My dad was an OB/GYN who loved to travel, so I also did a lot of traveling in my youth, but that stopped when I got sick in 1999 at age 28. My mother is from Sweden, so we spent every summer there growing up, and one year, we took a cruise from Sweden to Russia. So, I have been to St. Petersburg, too! My mom still spends her summers in the same house I grew up in, but I have not been there since I got sick 12 years ago.

Even though having my colon and rectum removed stopped all of my Crohn's problems, I have had three surgeries and multiple hospitalizations due to scar tissue grabbing a hold of my small intestine and blocking it off. In April 2008, I almost died when a blockage caused my small intestine to perforate and was saved by having emergency surgery.

I have not had any problems with my ileostomy leaking, so when I feel good, I'm comfortable taking short trips, like visiting my sister who lives 3 hours by car. You said that you were stressed about traveling with your ileostomy over Christmas. Have you been having problems with leaking? If so, there are many of solutions to that, and we can help with different tips.

I'm hopeful that my health problems are finally behind me and have been feeling great since August 2008. My husband and I have re-kindled our sex life, which has been a blessing. He has been so supportive and has never complained, which has made me love him even more. For the first time in 12 years, I am actually thinking about planning a trip to Sweden this summer, which is a really big deal for me.

I just wanted to share with you how much I relate to what you're going through and to let you know that everything will get better. It just takes a lot patience, which is much easier said than done. I hope you have a really good first day back at work!

Hugs, Cecilia