So I had a recent pouchoscopy, pouchogram and CT. What a LONG day. All and all nothing can be found wrong. I have a photo of my pouch since I was given a tour of it. I will upload it and attach it to this thread in case anyone wants to see what a "perfect" pouch looks like. no polyps, pouchitis and great valve. Looks like my issues are not related to the pouch and my bladder pain is just bad roll of the dice.
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I don't know whether to congratulate you or console you! Must be frustrating to not have something that can be fixed to erase your symptoms.
Jan
Jan
Ran into a friend at the palms who had her BCIR removed. She had similar issues to my complaints but they found she had an adhesion that split her pouch into 2 pretty much, went right down the middle and wrapped around the outside. Then her bladder, pouch and uterus was pretty much fuzed together.
I am not sure what is my issue, well the pouch and adhesion issue isn't mine, my pouch is a single one still
All the complaints she had with the BCIR she still has with the ileostomy so makes me think this might just be as good as it gets!
not throwing in the towel yet... I was in the ER a few weeks ago 2 times, 2nd time I swore I was having a heart attack. I just have a messed up disease.
I am not sure what is my issue, well the pouch and adhesion issue isn't mine, my pouch is a single one still
All the complaints she had with the BCIR she still has with the ileostomy so makes me think this might just be as good as it gets!
not throwing in the towel yet... I was in the ER a few weeks ago 2 times, 2nd time I swore I was having a heart attack. I just have a messed up disease.
Arrrgh! You sure don't want to sign up for more surgery without any reasonable expectation of an improved function!
Did someone slip a gremlin in you during one of your many surgeries?
Jan
Did someone slip a gremlin in you during one of your many surgeries?
Jan
Few factors play into it all. One is my height and the capacity I have in my abdomen, other is nerves. Then I have upper GI issues so I am just screwed.
I am going to try Gabepentin (sp) again. I was on it for IC before and maybe do a low dose ant-idepressant, was on that for IC too and it sort of helped bladder issues.
But here is a photo attached.
top left is the small bowel, bottom left is the pouch, top right is illeum and bottom right is the valve. So it is perfect. Nothing can be found. Weird, all the nurses oooooh and awwwwwed when they could first see the thing. Said they never saw such a problem free pouch
ha!
I am going to try Gabepentin (sp) again. I was on it for IC before and maybe do a low dose ant-idepressant, was on that for IC too and it sort of helped bladder issues.
But here is a photo attached.
top left is the small bowel, bottom left is the pouch, top right is illeum and bottom right is the valve. So it is perfect. Nothing can be found. Weird, all the nurses oooooh and awwwwwed when they could first see the thing. Said they never saw such a problem free pouch
ha!
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Hi Vanessa,
I couldn't find the pic of your pouch?
I had a pouchogram a month ago and all was well. Days later I had a major blockage and had to see stoma nurse to fix it(first and LAST time!!). She basically sussed out where the route to pouch went, via finger in stoma and rammed the catheter in.
Apparently this was the 'only way' to do it and 'not to worry' as pouch will not be damaged?!. Well, I was so relieved and and but nearly in tears too as there was so much blood and it hurt like hell.
On average I have one blockage a week.
I unblock myself, as I'd rather roger my own intestine - thank you then someone else do it for me - unless it's my surgeon.
I have to get my bougie out and 'gently' but firmly push to unblock then I post medina catheter down.
I tried indwelling over night and drainfree during the day but it irritates and bloats my stomach up. not sure if I've an allergy to the silicone but then surely the outside of my stoma would be inflamed also?
My husband works from home 2-3 days a week, so I indwell overnight if I have to on the days he has to go into work as I've kids to get to school on time.
That's where I'm upto at the moment.
I'm sorry your're friend had to have her pouch removed.
I've 'twittered' you Vanessa and now following but don't get to go on much due to kids and lots of kittens and cats! lols!
Hope you are feeling a bit better today too :-)
Rach
I couldn't find the pic of your pouch?
I had a pouchogram a month ago and all was well. Days later I had a major blockage and had to see stoma nurse to fix it(first and LAST time!!). She basically sussed out where the route to pouch went, via finger in stoma and rammed the catheter in.
Apparently this was the 'only way' to do it and 'not to worry' as pouch will not be damaged?!. Well, I was so relieved and and but nearly in tears too as there was so much blood and it hurt like hell.
On average I have one blockage a week.
I unblock myself, as I'd rather roger my own intestine - thank you then someone else do it for me - unless it's my surgeon.
I have to get my bougie out and 'gently' but firmly push to unblock then I post medina catheter down.
I tried indwelling over night and drainfree during the day but it irritates and bloats my stomach up. not sure if I've an allergy to the silicone but then surely the outside of my stoma would be inflamed also?
My husband works from home 2-3 days a week, so I indwell overnight if I have to on the days he has to go into work as I've kids to get to school on time.
That's where I'm upto at the moment.
I'm sorry your're friend had to have her pouch removed.
I've 'twittered' you Vanessa and now following but don't get to go on much due to kids and lots of kittens and cats! lols!
Hope you are feeling a bit better today too :-)
Rach
The attachment is in the footer of the last post I did above yours
Got it :-)
It looks really healthy.
Hope you are feeling better today.
Rach
It looks really healthy.
Hope you are feeling better today.
Rach