Pouch prolapse

Anything they give you that sedates you in any way is likely to have an impact on your bowels and I assume the point of the test is to see how your pouch and bowel function in their normal state and not when you have consumed meds that are bowel slowers.  That being said I don't understand why you would be more concerned about this test than the pouchoscopy.  It's just an X Ray or scan of your bowel.  They can't sedate for everything and I certainly wouldn't want anything for this test.

In fairness, pooping under observation can create plenty of embarrassment, but the test is physically no big deal. It is an enormously helpful test in getting to the cause of the problem, so that, at least, is something to look forward to. 

Yes, defagraphy is not painful, just awkward and embarassing. It basically is like a barium enema, but with a thicken liquid/paste. You sit on a bedpan on the x-ray table and empty your pouch while they take flouroscopy films. 

Do you take anything for anxiety? It might help you relax. Otherwise, use some relaxation techniques, like visualization and deep breathing. It will be over before you know it. No worse than a pelvic exam.

Jan

Kelly,

I recently had a Defecating Proctogram (defecography) at the Cleveland Clinc, ordered by Dr Shen for a prolapse as well.

The test did not take more than 15 minutes, rather than the 2-3 hours mentioned in their paperwork. It was pretty simple & discreet. The xray tech has their back to you most of the time staring at the monitor. You first lay on a table and they fill your pouch and part of your small intestine with barium contrast. Then you sit on a make-shift toilet: real toilet seat mounted on a PVC frame with a garbage bag below to catch the contrast. The toilet is turned so you only look at the wall and the back of the xray tech. Just try to relax and empty you pouch and it will all be over.

I worried about the test much longer than the test actually took.

I just wrote a long response on another thread about the prolapse, but it appears it never actually posted even though I received a confirmation. Very frustrating! Long story short: Dr Shen identified a mucosal prolapse of the anterior wall of my jpouch; my prolapse has a prominent fold blocking 75% of my pouch outlet. My prolapse had been around for more than a year before I first went to Dr Shen and caused my much grief. You are fortunate that Dr Shen may have identified yours before it causes much trouble.

Good luck with your exam. It only takes a few minutes.

Laura

were you experiencing a problem with the pouch, and is that why you went to see Shen or did he find on just a checkup?? He scoped me a month or so ago due to some bleeding I had. I had just had my reconnection of my second pouch 2 months prior. He stated that I too had a very mild prolapse but in questioning him and my surgeon Dr Remzi extensively they stated it was nothing to be concerned about and to not worry and go live my life.. He said to treat it as a hemorrhoid and just not to strain. I haven't had any pooping issues so trying not to let it worry me. I do have a minor issue of leaking stool sometimes but its usually just a smudge on the pad after several hours so not that bad, but that is an issue caused from the handsewn redo and the mucousectomy. I am still only just over 3 ,months since my takedown

Thanks everyone for your responses!

CTBarrister - you are right, I wouldn't want anything to interfere with the natural response my body has; I guess I didn't fully understand how the test worked.

Jan - Yes, I do take anxiety meds and they've overall helped. I guess I was thinking there might be some scope or something they might insert as part of the test and that's typically when I get more anxious. But it sounds like that isn't the case which is good news!

Laura - Thank you so much for sharing your experience!! That was incredibly helpful and reassuring for me. The instructions indicated it may take a few hours which also had me worried but it sounds like it was pretty straight forward and painless (things I like to hear!).

Pouchomarx - I have a regular GI in DC but got referred to Dr Shen after struggling last year with ongoing cuffitis. We tried a variety of things and eventually I did start to feel better (after about 9 months or so). I'm still not totally sure if the Remicade finally got me back to remission or what, but the cuffitis is now gone. I was experiencing a lot of tailbone/rectal pain several months ago (along with extreme fatigue) and that was part of what sent me to Dr Shen. I just want to make sure I do whatever I need to do so I don't feel that way again. My main concern is that I keep the prolapse from worsening (if it is confirmed that's what's going on) because I don't want the pain to get back where it was several months ago. I haven't exercised in almost a year when I typically work out a few times a week so I also want to make sure that once I start up again I don't put my pouch at risk. I've had this j-pouch 25 years and I want to keep it

Thank you all again for all your support! I really wish these forums were around when I was a kid because they've really helped me in so many ways.

Hi Kelly I had a defeating pouchagram in the UK a few months ago and fully agree with what everyone has said. It was over quickly and was actually one of the quickest and easiest test I've had. I too was worried prior to having it but there was no need.

Hope all goes well for you!

Gail

Just wanted to share that the test went well and there truly was nothing to worry about. They really know what they are doing at the Cleveland Clinic! Now I just have to see what Dr Shen says...

kc80 posted:

Just wanted to share that the test went well and there truly was nothing to worry about. They really know what they are doing at the Cleveland Clinic! Now I just have to see what Dr Shen says...

what did Shen say?????????

Hi Kelly

I am so glad that the test was not as bad as you feared. Fingers crossed that all is ok. 

Gail x

Still waiting to hear back from Shen. Will post once he calls me back

Hi Kelly 

I've had j pouch rectal prolapse surgical repair done 10 years ago about 2 years post take down. And havent had a prolapse ever since ... So if it does come to that I'm free to chat about the surgery and my experience  . �� 

Good luck 

Arpi

Hi all, so I haven't been able to talk over the phone with Dr. Shen, but I did get this response from one of the doctors who works with him: "Pouchoscopy on 4/8 showed anterior wall prolapse.  Defecography supports this and reports agreement limb dilation which in correlation with pouchoscopy findings is due to outlet obstruction from prolapse. She needs to do manual maneuvers for emptying her pouch. If this is clinically significant for her she might need to discuss with the surgeons. For now, manual maneuvers and a clinic f/u visit in July or August."

Have any of you had to do these manual maneuvers? They described them to me but I don't think I'm doing them right because they aren't making a difference in emptying my pouch... Overall I'm feeling much better but I really want to make sure I do something so I don't strain and make it worse.

Arpi - did you have the surgery done at the Cleveland Clinic or elsewhere?

yogijano posted:

Hi Kelly 

I've had j pouch rectal prolapse surgical repair done 10 years ago about 2 years post take down. And havent had a prolapse ever since ... So if it does come to that I'm free to chat about the surgery and my experience  . �� 

Good luck 

Arpi

did you need a temp ileostomy after this surgery?

Kelly,

It sounds like we are in similar situations, perhaps with my prolapse being more advanced than yours. In April Dr Shen diagnosed a mucosal prolapse of the anterior wall with a prominent fold blocking 75 % of my pouch outlet. Manual maneuvering as well as B&O suppositories were recommended before considering sugery. Insurance would not cover B&O, but I was able to get valium suppositories.  The instructions I was given for the manual maneuvering by Dr Shen were quite simple: apply pressure towards the rear thru the vaginal wall.  However, this maneuver was extremely painful and ineffective in my case. After several weeks without success, I saw 2 local doctors for additional advice or a referral to a physical therapist  on this maneuver and they had nothing to offer. However, i continued to try for several months until it became too painful and my insurance denied B&O for the final time.  Should you discover a more successful approach to this technique, please share with me! As it is, I am scheduled in August for a combined endoscopic therapy/surgery with Dr Shen & Dr Ashburn at the Cleveland Clinc to resolve the blockage caused by the prolapse. There is not much info available on this type of procedure, other than the verbal description by Dr Shen during my pouchoscopy. Since it is a rather type of procdure, I am a bit nervous but I know I am in good hands in Cleveland. 

Hope you find some success with the maneuver. 

Laura

Hi pouchomarx no I did not. I had a temp ileostomy only between 1 and 2 step of my colectomy. I did however shortly after suffer a bowel obstruction that I believe I needed an ng tube for that wouldn't resolve and then eventually required surgical repair . But I was prone to obstructions I had a few of them shortly after all of my surgeries.

kelly -except for my most recent surgery this past December I had all surgeries including the prolapse repair done when I was a teenager at children's hospital of Philadelphia by Dr Peter Mattei. The best doctor in the world in my opinion ...he was amazing to me and has the best bedside manner . Too bad I can't go to him anymore wish I could as an adult. 

Been reading and reading all over this site, as I have completed some tests and am moving forward to surgically resolve issues that I've had since March. Of course, trying to find out if anyone else has similar problem. Seems  I am  facing a surgical repair of a partial prolapse and partial mucousectomy. My takedown was March of 2014 and I've had multiple issues with Cuffitis and high frequency . Cuffitis was resolved with Cortifoam and perhaps time. Frequency is just my new way of life, despite Entyvio infusions every 7 weeks. But in March my Gastro and I suspected a Prolapse and in June had the Defography test, though my surgeon did not see the prolapse in that. I think it was because they did the test with me laying on table, and it is only evident in a sitting position. Told them that, so they tilted table but still did not create position that promotes it protruding and by then the barium was mostly gone anyway. Think CC has better plan for that test! Anyway, went for second opinion since if I were to have a prolapse they were going to refer me to CC anyway for those surgeries.  Found that an excellent and experienced Dr. from CC is now local for me. He just completed a pouchoscopy and digital exam, finding a flap from anterior of pouch that he thinks is prolapsing. Scheduling surgery to fix this but am a little distraught that it includes partial mucousectomy due to location of that flap and how he intends to fix it. Obviously I am concerned about continence issue following this surgery. Good to hear some of you say the mucousectomy did not cause that for you. It is possible I will have temporary ileo though that is not Plan A. Does anyone know how often that is needed- said may be needed for healing. I will have consult with him in a month so will find out more then. I am thankful he found it because I feel it pop out with every BM and knew it was creating problems for me emptying. Every time I go, it's 4-6 times with lots of moving around. A bit frustrated when other surgeon said that my pouch  was just dysfunctional. Curious about the "manual maneuvers" that Dr. Shen recommends for prolapse and would that prevent surgery? Is that just a temperary solution? Seems like doing that the 20 times a day I go could be difficult. Any advice, head up info greatly appreciated. Do feel I have highly competent surgeon- got very lucky that he was recruited here just year ago!

So  thankful for this site because it is hard to get all this from the doctors. It helps me figure out what questions I need to ask and more details on what to expect. I would not have survived last 2 years without suggestions from all here! I Would not have know about ILex paste! Unfortunate thing that so many of us are still struggling, but good we can support each other! Thank you!

laurie

I'm not sure if leakage is considered continence issue? By I had a total pouch redo and mucousectomy with Dr Remzi at CC in October and takedown in March. I still have leakage , it's not too bad but it's there. A little frustrating sometimes. And I also have a mild prolapse but it's not affecting anything as far as function. Other than that I feel great. 

Leakage is a continence issue. It is just a minor one, more or less, but still an annoyance.

Jan

Pouchomarx, I know you had a pouch redo and mucousectomy and glad you're feeling great! Did you have a prolapse before or is this new- assuming it is. Glad it's not a probkem for you. 

Do you or anyone else know the reasons for mucousectomy? I understand mine is because the repair is so low in pouch but don't know how common this procedure is and what warrants it. Do most people go to temporary ileo while it heals from surgery? My surgeon said it's possible but hoping not. Would make sense as that area will be a bit sensitive after repair done rectally. Ugh! Not happy but...

laurie

Ljz posted:

Pouchomarx, I know you had a pouch redo and mucousectomy and glad you're feeling great! Did you have a prolapse before or is this new- assuming it is. Glad it's not a probkem for you. 

Do you or anyone else know the reasons for mucousectomy? I understand mine is because the repair is so low in pouch but don't know how common this procedure is and what warrants it. Do most people go to temporary ileo while it heals from surgery? My surgeon said it's possible but hoping not. Would make sense as that area will be a bit sensitive after repair done rectally. Ugh! Not happy but...

laurie

Shen noticed the mild prolapse on a scope several weeks after takedown, but him and Remzi said nothing to worry about as long as no symptoms. I was told Remzi does mucousectomy for all his redos.

Has anyone had bloating as a result of a prolapse? Or would that just be another issue? I've noticed over the past week it's gotten a lot worse and I'm wondering if maybe it's an bacteria imbalance? I think I probably had too much sugar for a few days and maybe now I'm paying for it. I've been drinking lots of water, trying to stick to plain proteins etc but even on an empty stomach it feels full to the point where my pants are really tight and I'm uncomfortable in general. I've also been trying out Gas-X and Beano a little. Just haven't found the right combination yet I guess. Any other suggestions?