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CateLiz
New Member


Date Joined May 2011
Total Posts : 3
   Posted 5/30/2011 3:17 PM (GMT -6)   
Hi. My name is Caitlin. I am  24 year old female. I was diagnosed with UC when I was 22 years old. I tried remicade, imuran, asecol, and eventually ended up on prednisone most of my illness. Starting around Christmas 2010, I was getting really bad flare ups that the prednisone wasn't taking care of. Feb 8, 2011 I went to the ER in extreme stomach pain. I was in the hospital for almost a month on high doses of IV pred that wasn't working. I was on hydromorphone IVs to ease the pain. My doctors finally sent up a surgeon who specialized in ileostomies and what not. I had never heard of the surgery so I was scared out of my mind.
 
Had no other option than for surgery. Feb 24, 2011 I had my entire colon removed and a j-pouch construction and ended with a colostomy bag. I was devastated and hated it, I still do. I was told I would be able to reverse it in a few months once everything healed. I left the hospital March 5, 2011 and had a very hard time at home. I was on many meds along with my big pain meds that made me out of it all the time. I was always crying and feeling sorry for myself. Fortunately, I still live at home and have the support of my family. It is probably the hardest thing I've had to deal with in my life. I'm 5'6 and normally 125lbs. I left the hospital at 96lbs. I had no energy, I could barely stand, walk, shower, or get dressed without the help of a family member. It was devastating. The end of March is when I finally went back to work on a part time basis and then in April went back full time. I went to several doctor check ups and did a pouch study and found a rectovaginal fistula where stool comes out of my vagina as well as my anus. My surgeon could barely see it on the screen and thought that it would heal on its own after takedown.
 
Takedown was set for May 12 and it was a success until I got home. My inner pouch was working fine besides having the leakage from the fistula. My anus was in extreme pain all the time, I could barely sit or stand and hated using the bathroom. Going to the bathroom gave me the most pain where I was in tears and debated going to the ER. I saw my doctor last Monday and he immediately admitted me into the hospital and I had the bag put back on the next morning. My butt hasn't hurt since! I came home this past Saturday morning. I'm so mad that I have to deal with the bag again but I am told that it can be reversed again once the fistula heals.
 
I am an emotional wreck and cry a lot of the time. I can't control it. It's not even the pain that I'm crying about it, it's me feeling sorry for myself and having flashbacks of everything I went through, all the trauma. It's very hard to consume and handle. I'm searching support groups and even therapy to do everything I can to feel better. If anyone reads this, please keep me in your prayers.
 
Caitlin

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/30/2011 4:48 PM (GMT -6)   
Caitlin

Sorry to hear about your set back but once the fistula heals and you are ready for the reversal things should get better soon. Many people (my husband included) hoped they could have a j-pouch and it is not meant to be. I understand your emotional state, but focus on the fact it is temporary and not permanent since that is the route you prefer.

Honestly though it's been 5 months since my husband's surgery and now that he has healed and has gotten the hang of all of this and is finally out of pain and has a life given back to him it really is great. Granted it's not a choice anyone wants to make but when everything stops helping and stops working and this is the way to get your life back you really do accept it better than you thought you would. Or at least that's the case here and many others I read posts from.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 5/30/2011 8:32 PM (GMT -6)   
Caitlin,

We had our surgeries on the same day -- Feb 24. Sorry you've been having such a rough time. It's a big trauma, and I think a certain amount of feeling sorry for yourself is OK -- you've been through a lot. After a while, the pity party gets old, and you'll adjust and deal with the next step. It's very hard when you're expecting one outcome and then you have a big setback like you did, and a fistula is certainly no fun.

You are not getting much of the good stuff yet, and it all gets easier when you feel better, like UC wife says.

I definitely think a support group and maybe some therapy is a good idea. You might also see if you can get into a stress management program, if you're up for it. I went to one several months before my surgery ... didn't help my gi symptoms at all, but it gave me some new coping skills that helped me get through things.

It's great that your family is supportive, that's so important. But sometimes it's nice to talk to a) people who have gone through similar things as you, no matter how much others care, it's not the same as having gone through it themselves and b) people who are not involved, like therapists etc.... then you don't have to worry about how your being sick is impacting them.... don't know if that's a concern for you, but it has been for a lot of us.

Hang in .... .its a cliche, but a good one -- one day at a time. People do heal from everything you're dealing with.

Also, this is true for me and a lot of others have said it too -- when you get better, the really bad times become a bit of a blur.... hopefully not too long from now, your pouch days will just be a fuzzy nightmare in the past, as you get on w/your life.

I'll be thinking of you.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/31/2011 7:37 PM (GMT -6)   
Have you searched www.UOAA.org? They have links to support groups around the country. I would seriously consider talking to a professional that handles PTSD. That can help you with your fears and dealing with flashbacks. Medication can also help get you through this rough patch.

I am glad you found the forum.

(((HUGS)))
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Chevypower1930
Regular Member


Date Joined Sep 2009
Total Posts : 254
   Posted 5/31/2011 8:01 PM (GMT -6)   
Caitlin,

I'm a 21 year old who went through the horrible pain and suffering also... I was diagnosed at about 17 years old, I was absolutely furious at my body. I have played soccer since I was 8 years old. I have been racing motocross since I was about 11, and wakeboarded from about 11 also. So I have always been an extremely active guy.

I suffered with HORRIBLE flares for 3 years. Most of my flares put me in the hospital, and required blood tranfusions, morphine, and month long hospital stays each time. I was on very high doses of prednisone each time and it was just taking it's toll. I didn't want to be on the stuff anymore. I tried remicade which actually worked for 8 months. I got back into motocross and was feeling great, and then got smacked with another flare. I went into the hospital telling each doctor that I want the surgery, I had had enough and just wanted to get the disease out of my body.

I got my ileostomy in June of last year. I am 6 feet tall and went into surgery at 115 pounds. I was extremely sick, and my surgeon said the surgery basically saved my life, my body could not have taken much more of what was happening and was shutting down from dehydration and blood loss.

I had a tough recovery, as the healing was slowed from the prednisone dose I was on and the fact that I went in so weak and sick. I was exactly like you as not being able to even walk or shower on my own power. I recovered and got back to work and started living again.

I got my J pouch takedown surgery January 6th of this year. I am doing great and am actually back on the motocross track! I really really hope your next surgery goes well! You are definitely in my thoughts and prayers I know the pain UC can bring and it's no fun! Keep on pushing through it, I was at times in my illness where I didn't think I was going to make it, I thought I was really going to lose my life and actually felt like the pain and suffering was too much to even live through. Keep on pushing and you'll get out of it! You're feeling better already since your last surgery!
21 Year Old Male

Diagnosed with Moderate/Severe Ulcerative Colitis May 2008
3 Flair ups (first flair- 2 months/Second Flair- 2 months/ Third flair- One week, then surgery)

-Full Ileostomy surgery done on july 22!
-J pouch DONE--January 6th

Living a COMPLETELY normal and active life with a J pouch!
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