ileostomy support

[jojo24]

Hello. Just a little background of what's been going on with me:  I was recently discharged from the Air Force because of ulcerative colitis.   I got sick in September of 2007 and never fully recovered.  I was sick and on and off in the hospital for about seven months.  I was very malnourished due to my colon not absorbing food, water, or nutrients.  I went from 150lbs to 90lbs in about a month and a half, if that.  My last trip to the hospital resulted in numerous antibiotics, a treatment of Remacaid, and chemo drugs to no avail.  My doctors did a sigmoidoscopy on me and were scared to go any further for fear that they might puncture my colon as it was in that bad of shape. They put me on TPN and I ended up having to get six pints of blood. They later discovered that I had CMV, a virus that usually only occurs with ulcerative colitis patients, and people who have other severe auto-immune diseases.  The pain was unbearable for the first six months and no amount of pain medication no matter how strong was working.  On March 13, my doctor thought it best to remove my colon and she said there was basically no way to save it.   I had my colon removed on March 15 and it saved my life.  My colon had attacked my body so bad that I was delirious and slipping away and I had a constant fever.  After my surgery, I did not get better right away.  I got a blood clot in my arm, some type of infection in my picc line, and I caught pneumonia, not to mention the chemo drugs were making me vomit and my hair fell out (probably from the combination of malnutrition and chemo). Anyway, the surgeon left my rectum intact and took the rest of my colon.  I now have an ileostomy and will have surgery in October to get my j-pouch, and again in April of 2009 to get my ileostomy reversed.  Since my surgery, I have gained 12 lbs and I feel like I am supposed to be grateful that I'm alive, however, my emotions from everything that I went through are taking over. The doctor put me on Prozac but I still cry almost everyday because it's scary thinking about the fact that I almost died.  I'm only 26 years old and I don't really know anyone who has been through this kind of thing.  Because of all of the pain I endured over the past seven months, I am terrified of even the slightest pain now that it's gone.  The pain from that disease was so excrutiating that I wouldn't even wish it on my worst enemy.  I'm terrified to have the next surgery, and I'm terrified to have children even though I want them so bad.  I'm just so scared of the pain.  I guess my question is, is there anyone out there who has been in a similar situation, had the surgery, and can convince me that it's not so bad?  Does anyone know of any support groups for people who have had the surgery?  I really don't have anyone around me that truly understands because they haven't been through it so it's difficult for them to put themselves in my shoes.  I guess the aftermath of this traumatic experience has been devastating to me and I'm not quite sure how to move on from it. I'm not trying to have a pity party for myself, but after all of this I am very depressed when I feel like I should be celebrating my recovery and the fact that I'm alive, and that I feel better physically than I have in the 15 years I've had this disease.  I'm trying to cope but I can't do it alone.  Please help me.  Thank you in advance.  Jojo.

[Aimee131]

My name is Aimee. I have been thru hell since MArch 3. I am 38 but it was emergency. I had no clue. I have been fhru the loosing weight pic lines TPN the whole 9. I am miserable too. I have a 8 yr old. I DIED 2 x during my ordeal. I am at the end of my rope too I have a illeostomy a bag the whole nine. NO LIFE AT ALL. THEY Sy you can do everything like before. ********!! I Live in North Carolina. I don't know where u r. I WOULD LOVE TO HAVE SOMEONE TO TALK TO THAT UNDERSTANDS. I NORMALLY DONT DO THIS BUT I AM GOING TO GIVE YOU MY NUMBER. IF U CALL TEXT ME FIRST SO I WILL ANSWER. I HAVE LOOKED FOR SUPPORT GROUPS. CLOSEST ONE IS HOUR AWAY. I AM CURRENTLY LOOKING TO C IF I CAN GET RECONNECTED. PLEASE PLEASE CALL ME 252-341-5965. Also send me a friend request on Facebook. If u have it. I REALLY THINK WE COULD HELP EACH OTHER JUST BEING ABLE TO HAVE EACH OTHER AS A SOUNDING BOARD. IM NOT CRAZY IM JUST SO ANGRY UPSET AND XTREMELY DEPRESSED. I NEED A OSTOMY FRIEND. JUST LIME U I DONT GO ANYWHERE. IM SOOO PARANOID SOMETHING GONNA HAPPEN. ALWAYS SICK. I SOO UNDERSTAND HOW U FEEL. I THOUGHT I Was the only one this sick. I am SOOO glad I read ur story. PLEASE CALL AS SOON AS U CAN.
IN NEED OF SOMEONE LIKE ME
AIMEE WEATHERSBY
252-341-5965 (Amy)

[Aimee131]

My name is Aimee. I have been thru hell since MArch 3. I am 38 but it was emergency. I had no clue. I have been fhru the loosing weight pic lines TPN the whole 9. I am miserable too. I have a 8 yr old. I DIED 2 x during my ordeal. I am at the end of my rope too I have a illeostomy a bag the whole nine. NO LIFE AT ALL. THEY Sy you can do everything like before. ********!! I Live in North Carolina. I don't know where u r. I WOULD LOVE TO HAVE SOMEONE TO TALK TO THAT UNDERSTANDS. I NORMALLY DONT DO THIS BUT I AM GOING TO GIVE YOU MY NUMBER. IF U CALL TEXT ME FIRST SO I WILL ANSWER. I HAVE LOOKED FOR SUPPORT GROUPS. CLOSEST ONE IS HOUR AWAY. I AM CURRENTLY LOOKING TO C IF I CAN GET RECONNECTED. PLEASE PLEASE CALL ME 252-341-5965. Also send me a friend request on Facebook. If u have it. I REALLY THINK WE COULD HELP EACH OTHER JUST BEING ABLE TO HAVE EACH OTHER AS A SOUNDING BOARD. IM NOT CRAZY IM JUST SO ANGRY UPSET AND XTREMELY DEPRESSED. I NEED A OSTOMY FRIEND. JUST LIME U I DONT GO ANYWHERE. IM SOOO PARANOID SOMETHING GONNA HAPPEN. ALWAYS SICK. I SOO UNDERSTAND HOW U FEEL. I THOUGHT I Was the only one this sick. I am SOOO glad I read ur story. PLEASE CALL AS SOON AS U CAN.
IN NEED OF SOMEONE LIKE ME
AIMEE WEATHERSBY
252-341-5965 (Amy)

[Aimee131]

My name is Aimee. I have been thru hell since MArch 3. I am 38 but it was emergency. I had no clue. I have been fhru the loosing weight pic lines TPN the whole 9. I am miserable too. I have a 8 yr old. I DIED 2 x during my ordeal. I am at the end of my rope too I have a illeostomy a bag the whole nine. NO LIFE AT ALL. THEY Sy you can do everything like before. ********!! I Live in North Carolina. I don't know where u r. I WOULD LOVE TO HAVE SOMEONE TO TALK TO THAT UNDERSTANDS. I NORMALLY DONT DO THIS BUT I AM GOING TO GIVE YOU MY NUMBER. IF U CALL TEXT ME FIRST SO I WILL ANSWER. I HAVE LOOKED FOR SUPPORT GROUPS. CLOSEST ONE IS HOUR AWAY. I AM CURRENTLY LOOKING TO C IF I CAN GET RECONNECTED. PLEASE PLEASE CALL ME 252-341-5965. Also send me a friend request on Facebook. If u have it. I REALLY THINK WE COULD HELP EACH OTHER JUST BEING ABLE TO HAVE EACH OTHER AS A SOUNDING BOARD. IM NOT CRAZY IM JUST SO ANGRY UPSET AND XTREMELY DEPRESSED. I NEED A OSTOMY FRIEND. JUST LIME U I DONT GO ANYWHERE. IM SOOO PARANOID SOMETHING GONNA HAPPEN. ALWAYS SICK. I SOO UNDERSTAND HOW U FEEL. I THOUGHT I Was the only one this sick. I am SOOO glad I read ur story. PLEASE CALL AS SOON AS U CAN.
IN NEED OF SOMEONE LIKE ME
AIMEE WEATHERSBY
252-341-5965 (Amy)

[CalGal]

Google 'ileostomy support groups.' You should find a number of boards you can look at until you find one that you feel comfortable with. There are some wonderful groups out there and there are unfortunately a lot of people who have gone through what you experienced who should be able to give you a hand. You might also want to google 'ulcerative colitis' support groups. Many people who have U.C. and have had an ileostomy frequent those boards.