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rorho19

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Hi, something of a newbie here would appreciate comments from anyone with similar experiences/symptoms.

I was diagnosed with 2 small intestine strictures 4 years ago and have been on Azathioprine and Movicol ever since. Have been in inflammatory remission for about a year but still experience allot of pain on a daily basis. Especially sat at desk or in car.

Recent MRI shows strictures are fibrotic and I am being referred for resection...simply because of the pain.

Has anyone had experience of the movicol causing stomache pains? Every time I complain to IBD nurses about pain they say to increase the movicol...but it does not seem to help so I drop back from 1 sachet a day to 1/2. Could the movicol be causing the pain? I know cramps is a known side effect for some people.
thanks
 
I don't know about movicol, but when I had a stricture everything I tried made the pain worse and I eventually settled on taking nothing. Avoiding all fibre did help.

But if they're telling you to take it you probably shouldn't stop.
 
Since you have fibrotic strictures the pain might be from anything that passes through them, soft or not. The movical might be helping prevent an obstruction.
 
Last edited:
DEmberton...thanks - yes - it just not seem to make any difference to the pain but seems to give permanent bowel urgency for 5 hours or more after each bowel movement.

By the way did u loose your illeocal valve in your surgery and has that given you problems..they can't commit to saving mine.

thanks
 
rorho19 said:
DEmberton...thanks - yes - it just not seem to make any difference to the pain but seems to give permanent bowel urgency for 5 hours or more after each bowel movement.

By the way did u loose your illeocal valve in your surgery and has that given you problems..they can't commit to saving mine.

thanks
Click to expand...

I lost my illeocal valve during my resection. Before the surgery I did not have issues with D actually quite the opposite because of the stricture. After surgery I had D for about 2 weeks before my bowels settle back down.
 
JessPeper..glad to hear it was a fast a recovery from D as that. I am worried to loose it and worried at age 57 that might take very long time or never adjust....would hate to swap pain for such a limited life in terms of going out/places.

Yes I have had 4 years of tending to Const not D, this gives regular stomache pain both left and right which assume is stools backing up behind 2 strictures ...also now get bowel urgency and bladder urgency feelings which I guess is congestion leaning on the bladder ..maybe bulge between the 2 strcictures pressing on bladder.
 
rorho19 said:
JessPeper..glad to hear it was a fast a recovery from D as that. I am worried to loose it and worried at age 57 that might take very long time or never adjust....would hate to swap pain for such a limited life in terms of going out/places.

Yes I have had 4 years of tending to Const not D, this gives regular stomache pain both left and right which assume is stools backing up behind 2 strictures ...also now get bowel urgency and bladder urgency feelings which I guess is congestion leaning on the bladder ..maybe bulge between the 2 strcictures pressing on bladder.
Click to expand...

I also had terrible stomach cramping and bloating from the strictures. I am only 7 weeks post-op now but the cramping and bloating is gone for the most part. I honestly think the bloating and cramping was worse to handle than the D after surgery. Good luck to you! Please let us know how things turn out after surgery!
 
rorho19 said:
JessPeper..glad to hear it was a fast a recovery from D as that. I am worried to loose it and worried at age 57 that might take very long time or never adjust....would hate to swap pain for such a limited life in terms of going out/places.

Yes I have had 4 years of tending to Const not D, this gives regular stomache pain both left and right which assume is stools backing up behind 2 strictures ...also now get bowel urgency and bladder urgency feelings which I guess is congestion leaning on the bladder ..maybe bulge between the 2 strcictures pressing on bladder.
Click to expand...

Don't forget that when the strictures are gone you can do something about the D! I use psyllium to thicken things up when I don't have strictures and that works quite comfortably. If I'm going somewhere far from public loos I use immodium or codeine, both give more than a couple of hours respite.

At the moment I have new strictures forming so I'm very carefull with anything that slows things down, but when they're gone life is much more manageable.
 
rorho19 said:
By the way did u loose your illeocal valve in your surgery and has that given you problems..they can't commit to saving mine.
Click to expand...

Yes. I've had more loose stools and D since surgery than I did in the much more painful decades before (where it was very rare and I was mostly constipated), but if that's the valve; if that's to do with bile salt malabsorption, or whether it's just the disease being slightly different now I've no idea.
 
Thanks for that Jess...so you would not say the D is restricting you atall then.? or has it gone completely. I am very nervous of ending up more restricted than I am now - though as you say probably better D than the pain of C.
 
rorho19 said:
Thanks for that Jess...so you would not say the D is restricting you atall then.? or has it gone completely. I am very nervous of ending up more restricted than I am now - though as you say probably better D than the pain of C.
Click to expand...

I was off of work for three weeks following the surgery, so I didn't have to worry about it too much. I didn't want to leave the house within the first weeks anyhow. I'm 8 weeks post-op today and the D is completely gone.

Do you know if they plan on doing laparoscopic or open? Either way I highly recommend you listen to everything your doctor tells you. Just rest! The complications that come along if you don't are far more trying then D!

Best of luck to you! Please let me know how things go!
 
jESSpEPER

Pleased to hear your D has all gone away. It does seems to vary between different people. Can I ask roughly your age - I am in late 50's and worried if I lost valve that things would never adjust.
 
Laparoscopic! Maybe it would be worth going through a colonoscopy to know before what they thought would have to come out. My lower stricture is 9/10cm above the valve so I was hoping to keep it.

just resting - do you think you got complications by not resting enough/going to work to soon?
 
Walking does you the world of good. You shouldn't just stay in the house. I remember getting home from hospital on Friday evening and staying in all weekend and feeling guilty about it, but then Monday went out for a walk and apart from it then really hitting me how weak I was I felt much better for it. Just pace yourself and don't go too far.
 
rorho19 said:
Laparoscopic! Maybe it would be worth going through a colonoscopy to know before what they thought would have to come out. My lower stricture is 9/10cm above the valve so I was hoping to keep it.

just resting - do you think you got complications by not resting enough/going to work to soon?
Click to expand...

You're lucky! I wish mine could have been done that way. I had 8 inches taken out. My incision is about 6 inches long.

I came back to work after 3 weeks, I help manage an auto body shop. I'm not required to do much lifting when I came back it was mostly desk work so I cant say that coming back too soon is the cause of my complications.

I'm actually having a CT scan this afternoon to see just what is going on. My incision has a 1inch hole at the bottom of it that's about 2 inches deep. Its just not healing I've been packing it for the last 5 weeks. I've also been having some pain to the right of my incision that my surgeon believes could be adhesions. She believes the incision isn't healing because of the medications that I'm taking. I'm just hoping after today we get it all figured out.

I think the likelihood of complications for you would be a lot less common having the laparoscopic done. I would have taken the tiny incisions over the big one in a heartbeat!
 
DEmberton said:
Walking does you the world of good. You shouldn't just stay in the house. I remember getting home from hospital on Friday evening and staying in all weekend and feeling guilty about it, but then Monday went out for a walk and apart from it then really hitting me how weak I was I felt much better for it. Just pace yourself and don't go too far.
Click to expand...

I agree! You do need to walk. If you don't walk you don't pass gas and they wont let you leave the hospital. Once you're home if you don't at least get up and walk your bowels start to slow. The gas pain is the worst. When I came home I would just walk up and down the driveway. That's about all I could handle for the first week.
 
when i told the surgeon i was concerned about permanent D if i loose the valve he said that has never happened and he has been doing these a long time.

I guess it is back to what has been said before you tend to get people in need here. people who have a good outcome are not on here for long....
 
rorho19 said:
Thanks for that Jess...so you would not say the D is restricting you atall then.? or has it gone completely. I am very nervous of ending up more restricted than I am now - though as you say probably better D than the pain of C.
Click to expand...

After the first two weeks I didn't have D at all. Just normal bm's. My surgeon had told me before hand that the D would subside after a couple of weeks. Are the areas of your stricture the only areas of active crohns for you?
 
the deased part is jus the two strictures and bewteen them psuedosaculation....but he has to see what is below the lower stricture to be sure to connect two healthy ends.
 
rorho19 said:
the deased part is jus the two strictures and bewteen them psuedosaculation....but he has to see what is below the lower stricture to be sure to connect two healthy ends.
Click to expand...

They ended up taking out 8 inches of mine. When I went for a CT scan this week it showed no inflammation at all. I currently have no active Crohns left in my body! I hope the same for you!
 
jess - your question about active crohn's....well i guess they are not sure..if i have vistually zero inlamation so am in remission all they can see on a scan is what is fibrotic ie thick walled..i guess that is why he wont commit to saving the valve as he will only beable to tell what is healthy when he gets in there.


cheers
 

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