hello everyone. so since my last surgerty in march i have developed a severely rigid stricture. it is so bad that in the last two months I've had it dilated three times and it has yet to do anything but cause more pain. the last dilation was a week ago after being admitted to the e.r. with blinding abdominal pain and uncontrollable vomiting.the c.t. scan showed that the stricture had become a blockage by becoming even tighter and had caused my small intestine to dilate and swell abnormalay. so another dilation under anesthesia and my doc says "well it looks like crohns" i was diagnosed with u.c. since 2007! if this dilation doesn't work then he wants to send me to Cleveland medical in Ohio....the problem is that im in so much pain i don't thank i can wait that long. im sick of being sick and ready to stop fighting. i need advice on whether i should go back to an illeostomy permanently. im 5'5" and down to 104 lbs (that's including all myvo.v. fluids im being pumped full of) im.in constant pain and can't leave the house without planning my meals and pain meds around it. im stuck in the hospital right now and even my delauded pump isn't really helping the pain. please, i know its really a decision i have to make myself but id love to hear your advice or personal experiences. thank you.
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Kelsey,
I am so sorry to hear this is what is going on for you right now. It makes me sad to know a fellow poucher is in so much pain.
What is the purpose of going to CC? Are they going to do a pouch redo? Is there some surgery to cut out the stricture? I am just wondering what end result is waiting for you there...
I have never dealt with a stricture. However, the last 6 months I have developed numerous fistulas and have cutting setons threading through my bum and lady parts. They are extremely painful, although no where near as bad as a stricture must be. But I will tell you this-I made the decision that if I have one more occur, I am going to the ostomy. This struggle has been too long and we all know the amount of pain we pouchers have had to deal with. If you have dilaudid, and even that is not working, then what is going to help?
Can you be diverted temporarily just to get out of this massive pain and then make your decision from there? Or will you still be strictured?
If I were you, I would opt for the ostomy. That's my advice, but surely not the final word. I am the same height as you, and 104 with fluids is really low...
I wish you some respites from your suffering so you can make the best decision. I will keep you in my thoughts and prayers.
~Tammy
I am so sorry to hear this is what is going on for you right now. It makes me sad to know a fellow poucher is in so much pain.
What is the purpose of going to CC? Are they going to do a pouch redo? Is there some surgery to cut out the stricture? I am just wondering what end result is waiting for you there...
I have never dealt with a stricture. However, the last 6 months I have developed numerous fistulas and have cutting setons threading through my bum and lady parts. They are extremely painful, although no where near as bad as a stricture must be. But I will tell you this-I made the decision that if I have one more occur, I am going to the ostomy. This struggle has been too long and we all know the amount of pain we pouchers have had to deal with. If you have dilaudid, and even that is not working, then what is going to help?
Can you be diverted temporarily just to get out of this massive pain and then make your decision from there? Or will you still be strictured?
If I were you, I would opt for the ostomy. That's my advice, but surely not the final word. I am the same height as you, and 104 with fluids is really low...
I wish you some respites from your suffering so you can make the best decision. I will keep you in my thoughts and prayers.
~Tammy
My two cents....You appear to be young...If I were you, I'd go to Cleveland and see what they can do for you. I wouldn't accept a permenant ostomy yet...they'll do everything in their power to salvage your pouch. btw, I had severe stricturing also....not fun. May God bless you and guide you in your decision.
kelsey so very sorry to hear of your situation. My vote is to get to Cleveland Clinic quickly and then see if you can get a diverting ileostomy. It is probably the fastest and easiest way for you to get out of pain. A diverting ileostomy will leave your pouch intact and buy lots of time to figure out your next steps with the CC experts and allow you to be in a more comfortable place with your mind and body when having to make such big decisions.
In the interim, if you are that underweight and not being able to eat, has any doctor suggested TPN? Its very important that you try to get you "whole body" into as best state as possible before undergoing any more surgeries.
In the interim, if you are that underweight and not being able to eat, has any doctor suggested TPN? Its very important that you try to get you "whole body" into as best state as possible before undergoing any more surgeries.
so I found out it's not a stricture...doctor Shen thinks it's dyschezia...basically a mechanical issue where the rectum muscle is constricting at the same time as the j-pouch. I was prescribed belladonna-opium suppositories to stop the spasms but no one has them in stock!!! and there is a back order so no one can order them either 
In the meantime I'm home bound and stuck on tpn until I can eat like a normal person. Going back to Cleveland for a manometry and defecography on my birthday :P
In the meantime I'm home bound and stuck on tpn until I can eat like a normal person. Going back to Cleveland for a manometry and defecography on my birthday :P
I hope your birthday is tomorrow and you get pain relief right now. How far away would someone have to drive to get the belladonna opium suppositories? I think some people on here take it orally. Is that available until the suppositories come in.
Things will get better.
Things will get better.
I choose an ileostomy at age 30 so I could start living my life again. That was 11 years ago and I have never regretted the choice. Two babies (now 6 1/2 and 4) later I can say that I love my ileo and the freedom it gives me - no pain, no drugs, no more surgeries, no diets.
Only you will know when you are done trying to make the pouch work for you. For me it is when I felt I was living around the pouch.
Please feel free to contact me if you have questions about living with a perm ileo.
Only you will know when you are done trying to make the pouch work for you. For me it is when I felt I was living around the pouch.
Please feel free to contact me if you have questions about living with a perm ileo.