I am not sure who your Doctor is but Dr Stephen Hanauer of Northwestern Hospital in Chicago is very good. You really need to see someone good in my opinion.  

Thank you for your reply, I'm in the UK, at st marks hospital, I've just been told my surgeon has retired a few weeks ago, and I've been passed to someone else! 

Is there any hope?

Hopefully you get into the new doctor soon. I think there are different advantages of an MRI and CTscan. At least they aren't invasive. 

I don't know what your options will be but imagine one would be to bypass your j-pouch and use an end ileostomy while trying to get your problems to heal. 

This all sounds painful. I hope you aren't in too much pain.

If they want to scan your whole body (but I would presume it was a full torso, rather than “head to toe”) CT is much cheaper and faster to do.

Jan

Hi all, my consultant did an internal examination, he couldn't even get the tip of his finger in, and said he thinks it's structured. I ten had a ct and my consultant saw a significant narrowing at he join. For that I had to go to theatre and have it dialated. The surgeon also put a seton in, but said to me if I found it to uncomfortable I could take it out. This all happend last Thursday. I used the dialator at home 2 days after the procedure, and I could with force get the dialator in, I was told to use the dialator twice a day by the surgeon, but then my nurse said no need and just use it 3 times a week. I haven't used it for 6 days, and I tried it today and I can't get the dialator in, I can get my index finger in quite easily but not the dialator. Can the scar tissue close it up this quickly?? 

They are still concerned about the lumps, but they don't think it's cancer, but they can't be sure until the biopsies come back. I've also been told I may need to have a fine needle biopsy, and I'm having a pouchoscopy in a few days. 

My main question is how quickly does scar tissue come back?? And can it just close up again at the join??

Any help and advice would be appreciated so much, thank you all in advance.

Sally x

Also I forgot to mention, before I had the dialation done I could not empty at all, I had to strain like crazy! And I had extreme gas that used to hurt like mad and basically I was home bound because I was forever feeling I needed the loo, but couldn't empty, so much so that the extreme gas was coming from my vagina as well as lots of discharge and mucus. Since the dialation however I can go to the toilet ALOT easier and I have had no gas from the vagina, and no discharge at all either, I think the pressure because I couldn't go to the loo caused fistulas. 

If I can empty and no pressure goes to the fistulas, does anyone think they can heal?

Thnak you again,

sally x

Hi Sally,

I had a dilation of my stricture done in surgery and it came back fast.  I had a bidet and had to give myself enemas to empty 4 - 6 times a day.  Have you tried anything like that to help empty.  I had an enema bag that I used when I HAD to be away from home, like when I went to Mayo's for several days.  

Long way of saying the stricture can come back fast. The imaging clearly showed my narrow opening.  My surgeon and GI at Mayo's said my cuffitis, which is UC, was causing the strictures from scarring.  I used canassa suppositories and was rotating antibiotics etc.  Chronic cuffitis and pouchitis and strictures did me in.

I ended up having my j-pouch removed.  I hope they save your j-pouch. I feel so much better without it.  The trade off is I have a permanent ileostomy. It is easier to deal with than my sick j-pouch.

Yes, scarring can recur that quickly. Three times a week is like every 2-3 days, NOT 6 days! Generally, you dilate frequently after surgical dilation, and gradually increase the interval between self dilation. If it starts to get difficult, then you need to go back to more frequent self dilations. Wait too long and you are back to needing dilation under anesthesia. 

Even if you are able to evacuate your pouch, you should still try to dilate once a day. Maybe get a smaller dilator from your surgeon. The fistula might heal, but you need to keep the pressure off.

Jan