Have these experts ever bothered to observe what you're describing? The devinitive test for pouch prolapse is defecography. I can't tell for sure what they're doing, but if they're casually assuming the answer without bothering to check, you may need to change doctors, or negotiate a better evaluation.

Wow... We had surgery very close to the same time.
11-13-13
I can't help you but I strain almost every time I go.  Nothing bulges out but if it did I would be concerned.  I know after a couple good days I clears up down there.  What I mean is things get inflamed.... I don't think it's hemorrhoids.  But could be.  What you are saying is something actually comes out when you push.  Maybe Jan would have some insight.  I wish you luck and hope it is not serious. 
Richard.

Yes, I would ask about a defagram. It is the imaging that visualizes pouch emptying mechanisms, and shows things that cannot be seen via endoscopy. And yes, chronic straining can lead to prolapse.

 

Jan

Would a defagram hurt with my fissures and hemorrhoids though? I keep trying to get a good look at whatever it is with a mirror, but I can't see much. What I feel does not seem normal though. I am going to make an appointment with my surgeon tomorrow. 

I have had this issue for a while and I also have skin tags...and extreme itching all of the time. Ive had scopes all throughout this past year, my last one being in November. Can the doctors tell my problem during a scope because they have said that I do not have a prolapse after one of my scopes. I just feel like they might be missing something, I don't know if I am just worrying for nothing though. 

Many prolapses are not evident during a scope because they inflate you with air and there is not the effect of bearing down and gravity. With a defagram, they instill a thick barium contrast and have expell it during flouroscopy. You should be sitting upright, like on a commode, but I have seen a few folks here who had it done while lying down. Does not make sense to me, since that is not physiological, but whatever.

 

it could cause you some pain, as they use an enema tube for the contrast. Perhaps you can discuss this with your doctor and he can arrange for them to use topical anesthetic to insert the tube.

 

Jan

Thank Jan and everyone! 

Does my surgeon or GI order a defogram test?

I made an appointment with my surgeon because I feel like surgically this is more of their speciality but I am not sure. Should I have consulted my GI instead?

They do keep in contact though because they are both at UCSF. 

Either one (surgeon or gastroenterologist) might use this test, if they think a pouch prolapse is a possibility (and if they have any idea what it's for). Their level of experience is the key. It is true that a pouch prolapse repair is a surgical procedure.

So I emailed my GI to let him know about everything (since I made an appt with my surgeon and not him) and asked if he thought I should do a defogram test. He replied and said "first you need a sigmoidoscopy it could be scar tissue or inflammatory tissue or a polyp or other"

I feel like a defogram would be really good though to show why I strain every single time I go to the bathroom and also if I am prolapsing or not! 

What would the scope show anyways?

Oh, sorry. I assumed that you had already been scoped. Yes, pouchoscopy should be a first step to rule out other issues like strictures, pouchitis, and visible structural defects.

 

Jan

I was in November. I have had like 4 scopes in the last year :/

Hmmm. Unless you have new symptoms since November, I do not see the point of the scope.

 

Jan

I talked to his nurse practitioner and she didn't see a need for the scope either. She's going to talk to my GI about a defogram! 

Thanks for the advice! 

Update....

So my GI insisted I have a scope first because he thought he could see if the pouch is prolapsing/ see what was going on. He also wanted to make sure there were no other problems before referring me to get a defogram. I had the scope on friday and he took biopsies and said it did seem like my pouch is prolapsing and that I also have a new fissure. 

He said he would know more on Wednesday after he gets my biopsies back. What would biopsies show about prolapsing? How would biopsies give him more information with my situation? I thought biopsies just showed like what kind of tissue is in my pouch (Crohns vs pouchitis, or things like that)... 

He is just being thorough. If there is evidence of Crohn's or poor blood supply (ischemia) in the biopsies, that would be helpful information. It would not determine if there was prolapse, malrotation, or other structural issues, but it might help figure out what the mechanism was to get you there.

 

Jan

So the biopsies won't tell him anything about the prolapse? 

Not specifically, but if you have evidence of Crohn's or ischemia, that might give some clues into why prolapse is occurring. There are a number of different types of prolapse too, and the defacogram would sort that out. A thorough workup can help unravel a puzzle. It may not seem relevant now, but itmight be later. Chronic fissures can be a sign of perianal Crohn's, so something to consider. Fissures occur on their own too, so don't get worked up about that.

 

Jan