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Needless to say i'm devastated. I am praying that I can get my small intestine healthy (literally just got back from the hospital after two days and 4 units of blood later) so I don't have to have a bag forever. I am honestly at a loss for words and I feel like my whole surgery was a waste. Anyone else living with Crohns that has a j pouch and successfully (so far) kept their j pouch? please tell me there is hope. 

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I am. I was originally diagnosed with UC but with ulcers above the pouch, I’ve been given the crohn’s diagnosis. I’m on Humira every week, Entocort, imuran, plus Amitriplyn and lomotil at night. These help me maintain a fairly ‘normal ‘ life. I am scoped about every 4 months to monitor the healing of ulcers. I was really sick before my j pouch surgery. Even dealing with crohn’s , life is a whole lot better. 

Take one day at a time. Allow yourself time to heal and see what happens.  You’re in my thoughts and prayers.

I too have recently been diagnosed with Crohn’s with ulcers throughout my ileum and a stricture situated right about the tip of the pouch on the other side of the bowel. Because of the stricture, only cutting the stricture out is not possible and I am facing full pouch removal if the stricture fully closes. 

While I was initially shocked that I was probably going to need surgery to remove the entire pouch, I’ve come to terms with going to a pouch removal. I have suffered two long years of not being able to eat. At the time, I only had ulcers at the anastomosis, but now has flared through my entire ileum. Yes, it is scary to think that I will one day need to have my pouch removed, but the only thing I long for is to be able to enjoy food and enjoy life. If going back to the bag will allow me to do that, then I will take it. For these past two years, I really suffered. I’ve lost jobs because of it. I haven’t been able to enjoy just life. Being in the hospital now for 16 days and on TPN with no food has made me realized that I want to be able to do things I want. I will not have this illness let me live in fear.

Currently I am waiting to try and see if the stricture can be stretched open. If it fails, then I will be in surgery removing my pouch. 

I hope you can find peace in your new diagnosis. I know I had some trouble grasping the concept that I have Crohn’s. It’s a tough journey, so take it one step at a time. I know you will find the strength to push forward. 

-Rina

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