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Hello all, On 10/25 I had most of my rectum removed and a j-pouch created to for rectal cancer. I am 35/m and just started FOLFOX chemo (just completed my first round, it was hell.) I have a loop ileostomy until my reversal can be done after chemo.

Since the surgery I have had almost no issues except I CONSTANTLY feel like I need to take a traditional bowel movement. I can occasionally pass a tiny bit of mucus or a micro-stool but most of the time nothing comes out, but the sensation never goes away. Oxycodone left over from the surgery mixed with Imodium is the only thing that seems to really help. I have tried warm epsom salt baths, works great while I am in the bath, but 30 mins later it seems to come right back. Warm packs temp help too. 

I also have difficulty fully emptying my bladder when urinating and feeling like something I am having a traditional bowel movement at the same time. It helps if I sit, then stand back up. The surgeon ordered a lower abdomen CAT scan which I am having done soon but this issue keeps dragging on. Their first exam they couldn't find anything wrong.

This is driving me nuts, I can not think about anything else while having this nagging sensation that something is stuck in there and won't come out!

My main question is if anyone has had this issue, if micro-enemas or anal irrigation helps? I am also very unsure of the process of anal irrigation, etc and also want to know if that is safe with a newer j-pouch. Someone on another forum said low dose Valium helped them. I am not finding too many people with this issue. Thank you all for your help.

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So some updates. Had a CAT scan, everything is normal. Immodium seems to do nothing, but Ativan helps some. Doing a scope through my stoma to check everything next.

Been passing mucus balls every few hours - I think I am over producing and hoping they figure this out. Go through some good days, then like today I feel it spasming and it is driving me crazy. I'll keep this log updated in case anyone in the future has this issue.

Maelleous,

Well, that sounds awfully familiar (and it has been 37yrs!).

I still get the 'feeling', I even dream about having a 'real' BM even though my colon and rectum have gone the way of the black & white t.v.!

The 1st few months after step one I 'spit' brown, smelly, disgusting mucus constantly...I was miserable. I had a leaky stoma and a leaky bottom (they created my k pouch first and took out my colon later)...I was 'unhooked' but my colon felt like it was trying to crawl out my bottom...at the time they gave me nothing and told me that it would pass, a sort of phantom limb syndrome.

When they took out my colon 5 months later and closed me off (the k pouch is an abdominal pouch with stoma) I continued to feel the urge and would tighten all the muscles down there to 'keep stuff in' that couldn't come out if it tried. I had no exit. 

I still feel like there is something there. About 10yrs later they did a scan...nope, nothing there. Most recent scans still show nothing...my brain has mostly adapted but if I let myself think about it I still get the urge.

Mind over matter...no...just the brain rewiring itself to stop the feeling. 

Once your pouch is active this should go away, for now, your biology and brain are not yet in-sync and require a bit of time plus you are pushing out mucus which doesn't help things. 

Too soon for biofeedback...use whatever you need to help but don't sweat it too much, it will eventually pass. It is normal.

Sharon

 

 

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