Calmo
Visbiome

Skip to main content

D
Hi All,

I am just back from a hospital admission during which I had two "large" polyps removed from a location 7cm in, from which I guess would be near the join between rectal canal and the pouch. I thought I would post about this for information for anyone who may be interested. I hope to get more details as well as hopefully positive results from biopsys taken from the polyps in the near future.

I had been suffering from what I thought was pouchitis or cuffitis for 18 months. I had felt inflammation which worsened sometime after eating. I also more recently started finding it a strain to emtpy the pouch and also had difficulty urinating as well as experiencing discomfort during erections. I had a scope 13 months ago which found nothing and I was told the pouch looked in good condition and the biopsys taken at that time tested only for minor inflammation. I was relieved then, although amazed that nothing was found to really explain the discomfort I had.

I was visiting the loo 10 to 20 times a day, mostly at night and life really was taking a dive. I could not sit comfortably in a normal position, had to use a cushion in the car and tired easily. Being a golfer I found I could not manage more than 12 holes before I had to make an agonising visit to the loo and basically had to the game up.

The procedure to scope the pouch was performed under a general anesthetic (as had the one the year before) which had me a little concerned as I was sure they must find something and I wanted to guide them. Anyway, I made my doctors very aware of what I felt and suggested what they might find and where (A patient generally can sense things I believe) and they did. They removed two polpys as I mentioned and I am very happy to report, although at a very early stage (4 days on), that I believe this has been my problem all this time and I am already so much better (even though I have lost weight and energy). I again feel my pouch is working properly again and no longer have the feeling of inflammation and can sit in comfort and no longer require a cushion in the car. I do hope the polyps will not return, although I am sure I have heard they could.

My surgeon did mention that it was very unusual for polyps to grow in the pouch, but would be interested to hear if anyone else knows or has experience to the contrary.

I will happily try to answer any questions, but should warn I only visit the site once in a while but will try to visit regularly over the next few weeks.

I hope to have a good year of golf ahead of me for once!

All the best,
Dave

Replies sorted oldest to newest

Jan DollarJan DollarModerator, RN, retired
I've had polyps removed 2-3 times. They were just inflammatory polyps, and didn't seem to have any impact one way or the other on my pouch function. They were at the rectal cuff, and saw them, as I was not sedated during my scopes. I believe they were associated with cuffitis. While removing the polyps for biopsy didn't make any difference, treating the cuffitis did.

Jan Smiler
Jan Dollar
TE MarieTE MarieMember
I'm guessing you had them on the rectal cuff which, in my case, contains 2 cm of my original rectum. That stinking 2cm has been getting (UC)cuffitis. All stool passes through, over, the rectal cuff on the way out the back door. I've found out there are a zillion nerve endings right there. (Ok, maybe thousands or hundreds, it feels like a zillion.) This can hurt more than UC did sometimes.

I thing a couple of big polyps right there by the nerves and all the stool passing over them could be very painful. I also find it difficult to urinate until my pouch empties as well. I had a bladder infection a few months after take down. It was worse than any I'd ever had. It was so bad I went to ER. How embarrassing to go to ER and that's what they find. I was told that it wasn't uncommon to have such a painful one.

Did they analyze your urine? I think something like that might be causing inflammation of your bladder, and infection, which is around your man parts. You might have 2 things wrong.

Just a guess, I'm and accountant not a medical professional. Cool

Thanks for posting about this Dave. I'd had polyps, in my colon, before I ditched it, and diverticulitis pan colon too. With all that going on I never thought polyps caused pain. I hope diverticulitis doesn't hit pouches too. Confused
TE Marie
Jan DollarJan DollarModerator, RN, retired
Yes! A definite connection between cuffitis/pouchitis and inflammmatory polyps. I had innumerable inflammatory polyps when I had a colon with pancolitis. So, it should be no surprise to have them if you have inflammation post colectomy. They do not necessarily mean they are precursors to dysplasia or cancer, but they need to be removed and biopsied.

The polyps are a result of inflammation, not a cause.

Jan Smiler
Jan Dollar
D DavieGMember
Thanks Jan & TE Marie,

It is useful to know there is a relationship and which came first.

I have had a pouch since 1996 after UC and up until 2 years ago had really no problems with it. I seem to recall before having my colon removed I did have a small polyp which I am not sure they removed at the time as I would have been midway through a UC flare up. Anyway that would have gone with the colon.

TE Marie - thanks for you post - I have had urine tests and still have a urology appointment coming up so I will get a full MOT (in the uk that's a full car inspection) and have had ultrasound scan and referal with respect to my prostate concerns which came back OK. But as everything is packed in down there it is almost certain those two polyps were overcrowding the region, and yes they caused more pain than I ever had with UC. Associated pain or direct pain it's all the same thing - PAIN! and we all know where. I also thought I may have two or even three things going on but now am hopeful that those damn polyps were the source of all my grief.

I have just had two nights in a row where I was only up once and having eaten some unhealthy take away food last night to help get some weight back, that has to be a promising sign.

I now have to get back into a healthy diet and exercise routine to get my fitness back and energy levels up.


Dave Cool
D
Jan DollarJan DollarModerator, RN, retired
Inflammatory polyps can be a source of trouble, since they can grow in strange ways, even forming a bridge from one side of the pouch to the other.

In my case, they did not cause any obstruction or other structural problems. They just were representative of chronic inflammation. I was just happy they were that, and not a adenoma-type.

If yours were in the pouch and not the rectal cuff, they really were a rare thing. I hope their removal is the end of your troubles. Here is an abstract that discusses pouch polyps.

http://www.ncbi.nlm.nih.gov/pubmed/17309000

Jan Smiler
Jan Dollar
CTBarristerCTBarristerMember
My recent scope on June 25 showed what has now been determined to be a benign inflammatory polyp in the pouch. My Doc told me he left it in because he does not like removing benign polyps, but after reading some of the posts in this thread I am starting to second-guess this strategy. How big can polyps get? Can it grow to the size of an obstruction in the year before my next scope?
CTBarrister
D DavieGMember
Hockadoo - I am glad my post was useful to you. I can report that 1.5 years on since the polyps were removed I am still very well indeed. Not that I measure everything by my golf, but I am able with a bit of dietary intake planning to complete 2 rounds in one day. I had a scope this year again in January (1 year on) and there was no sign of any polyp formation and all that was noted was very small ulcer near where the polyps were. I was not given or advised of any action to take on the ulcer and am carrying on with my life without medication. I sincerely wish you a positive outcome too and wish you the very best of recoveries.

CTBarrister - I would imagine every case would be different but the Polyps I had removed were pendulous and of approx 1cm (~1/3 inch) diameter. If they were not present at the time of my scope in 2012, then they did indeed grow to that size in a year. However, I am very sceptical and cannot explain how they were not present in 2012 given my symptoms. The best I can describe the feeling was like sitting on a Walnut when sat down and a general feeling of a swollen backside and throbbing pain when not. I had a few occasions of leakage overnight and as I mentioned in my original post, I had to pay frequent visits to the loo as anything in the pouch just gave me the feeling of needing to go, even though there was very little to pass. So I think in your case you need to look at your symptoms and also the details of the polyp location and current size. I would imagine if it is away from the cuff and is of a small size your Doc may feel it is not causing any problem and if removed could (?) lead to formation of ulcer and possible flare up of pouchitis. Did your Doc give a reason why he does not like removing benign polyps?
D
Last edited by DavieG
CTBarristerCTBarristerMember
quote:
Did your Doc give a reason why he does not like removing benign polyps?


I had a long chat with him last night about it. He said that the polyp is very small and benign and the main issue with removing them is the amount of bleeding that can occur, which he is concerned about. He said it's very rare that this kind of polyp grows big enough to be an obstruction. He also said if I have any obstruction like issues, or problems like you are describing, he will have no problem taking it out but he very much doubts that this will become an issue.
CTBarrister
TE MarieTE MarieMember
DaveG, This is very interesting and helps me better understand my cuffitis pain. I've always said there must be a zillion nerves in the cuff as when my cuffitis is flaring I can't understand how it can hurt so bad when the total area of the UC cells in the cuff is probably no larger than a quarter! You've described it well here how had an 1/3 inch polyp made you feel. Much worse than the Princess and the pea Confused
TE Marie
D DavieGMember
CTB - That seems an decent discussion you have had with your Doc. My only advice to you would be to go right back to him if you start sensing something is developing. I know that's kinda vague, but if you're anything like me you will notice things like increase in frequency, sense inflammation or increased (even more than normal) tiredness. In the mean time keep well and don't worry about it.

The thing is I only really realised how ill those polyps had made me after I had them removed and how much better I was - astonishingly quickly too. My symptoms probably developed over a total of 1.5 years before I had the polyps removed. The symptoms were gradual but noticeable at first - discomfort sitting. I had a scope as I said after 0.5 years when nothing was found (!?) and was taking meds for Pouchitis although nothing seemed to really alleviate the pain and discomfort. I don't recommend it but the only relief I could get was with Ibuprofen. After about 1 year of symptoms I had got to a stage which was so bad with discomfort, pains, weightloss, frequency, tiredness and lack of stamina that I had already seriously thought about getting shot of the pouch altogether. Had they not found anything during the scope when they did remove the polyps I am sure I would without a pouch anymore. Thanks by the grace of God I still do.
D
winter wishwinter wishMember
Hi
Sounds exactly where I am now! Was getting to the stage I couldn't walk with the pain. Glad to come across your post. I have a polyp that needs to be removed and a stricture ( I think is at the anastomosis) that is going to be botoxed. Pouch and anal canal are inflamed/ulcerated. Dave you seemed to get great relief after. How many days were you off work?
Thanks��
winter wish

Add Reply

Views: 1,161
Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×