Oh, J-pouch, please don’t fail me!
July 3, 2010This week I had a big setback. I was told that my internal J-Pouch was in the beginning stage of pouch failure. After only 16 months, my disease has caused my pouch to have repeated Pouchitis, it’s full of ulcers and there is a lack of blood supply to the pouch. Aggressive treatment is needed to try to save my pouch. So I go into crisis mode and do whatever it takes to fix this and hope in the end it does.
I often hear, God doesn’t give you more than you can handle. I know this. This isn’t the worst thing, others suffer way more than I do and I don’t feel sorry for myself or wallow in self pity(at least not for long). But I am human, and I hurt, I cry-hard, and sometimes I feel defeated, overwhelmed and tired. And call me selfish but I want some things that I feel are like sand slipping through my fingers. For the past 3.5 years, a good portion of my life has been focused on my illness. It would be nice to shift gears and not worry so much about sickness, meds, doctor visits, and be able to focus some attention on going to college, maybe getting a job, doing more with my friends, going forward in life.
I will move forward, just at a slower pace than others, and for now, that has to be ok.
My personality is wired in such a way that I try to stay positive and look for ways to take a bad situation and turn it into something good. It’s my coping mechanism. It is really the only thing that keeps me from succumbing to the stress that this illness has placed my body in and having a complete meltdown. From the outside I can fix myself to look nice and by all outward appearance, no one even knows how ill I am. But underneath there is a lot of pain going on as I realize that what is happening inside my body is so far out of my control that I have even begun to question if there is even an answer that exists out there for me for how rare I am. I like the idea of being one of a kind, but not like this….
So we head into uncharted territory and hope that the course that I am setting sail on leads me to solid ground because being on this rocky sea sailing nowhere is making me sick…literally.
“Although the world is full of suffering, it is also full of the overcoming of it.” – Helen Keller
~Nadia
QUESTION: WHEN YOU FEEL DEFEATED BY THIS ILLNESS, WHAT ARE WAYS TO HELP YOU OVERCOME THAT FEELING?
I am so sorry to hear you are feeling so ill and the J-Pouch is having so many problems. Just remember “Survival is sexy”.Sending you a ton of warm wishes and you are in my prayers. Hugs.
Hi Nadia. I’m far away from you (Germany) but at the moment I’m in a similar situation as you. My J-Pouch is still not activated 3 month after first surgery but I already have a Pouchitis since first surgery. The histologist wrote a letter with the following diagnostic: Pouchitis of the type Ulerative Colitis. So now I’m very depressed. I don’t understand this…
I keep you in my mind. Please keep fighting.
Many regards – Carsten
I’m so sorry to hear that you got bad news, Nadia! :( You are such an inspiration to a lot of people. Living with IBD is very difficult. I lived with severe Crohn’s colitis for 10 years (since I was 12), and it kept me from being able to do a lot of things. I always felt miserable; what a waste of my youth! I just got a permanent ileostomy and I am only 22, but I already feel like I can do so much more with the ostomy than with the illness. I know you have lived with an ostomy before and want to be able to keep your j-pouch and avoid future surgeries, but if it did come to having an ostomy again, it wouldn’t be so bad. You’re not alone!
I hope that your doctors can find answers for you that can make you happy, and I hope that you don’t have to deal with the pain much longer!
Nadia,
You are an angel sent from God… I am going through the same thing you are going through. I have Chronic pouchitis.. I am on flagyl and cipro but was told i can only be on it for a little bit more… They are talking about me going on Remicade or Humira.. The Reicade didnt work when I had my colon..so I am so not sure it will work now.
I will like to be more vocal with this also… not sure how to begin… I am going to pray for you . please keep in touch.. I am here if you need to talk… xxoo Keep the faith.
Hi Nadia,
I feel your pain, I recently (June 1st) had a total colectomy and ileostomy. I was only told I had UC two weeks before that!
I think your attitude and strength of character is incredible and inspirational. There are days when I think I can’t go on, but knowing that there are people like you out there gives me the strength to keep fighting.
I’m sending you as many positive thoughts as I can, good luck!
Henry (30)
UK
Hello Nadia I’m so happy to have found this sight I have been looking and praying to be able to talk to someone who can understand our way of living! I’m so sorry to hear about your setback. I have Been experiencing some difficulties with my Jpouch I’m about to send in my labs to see why I’m going to the bathroom more and when I wipe I see some blood so there going to test my stools, I can’t lie I’m a bit concerned because I don’t know what to expect I had my surgeries back in 98 n this is the first time I’ve had this problem. Again I’m so happy to have found you ill keep prayn for you u stay encouraged and Please keep in touch cause I need someone to talk to as you know it gets lonely. Be Blessed!