I went to see my GI guy yesterday, and relayed the message that the surgeon had given me to give saying that she wanted him to do a pouchoscopy and take a look because I was having serious symptoms of pouchitis. The surgeon put me on antibiotics and the symptoms cleared up but are beginning again a couple of months later. My GI guy says that a flexible sigmoidoscopy is fine to do with a j pouch and that he wants to biopsy and find out about the pouchitis. Is it even possible to put a scope up there without tearing and killing me? I was told before that nothing is supposed to go up there anymore so my doctor wanting to do this is terrifying to me. Any information would be a huge help. 

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Thank Gods. I'm always so worried about this kind of thing. They put me out completely for any kind of scoping thankfully, but if there's really no problem doing it physically then I won't need to worry any worse than I would when I used to get colonoscopies. Thank you so much.

Seirla, getting scoped is a perfectly reasonable step. Your pouch is plenty sturdy enough for a competent scoping. Just to clear up some terms: a pouchoscopy (scoping the pouch) is usually done using a flexible sigmoidoscope (other scopes are sometimes used). The procedure is not really a “sigmoidoscopy,” though, since your sigmoid colon was removed along with the rest of your colon, but many staff members may call it that. The little bit of rectal cuff that was left behind should be biopsied periodically to ensure that cancer (or dysplasia) aren’t developing - people differ on how often this should be done. Some folks who have a higher cancer risk get it done annually or even more often. A visual inspection of the rest of the pouch is probably more valuable than additional biopsies, but you’ll get both.

The procedure is straightforward and quick, and most folks (but not all) do it without sedation.

It’s called a flexible sigmoidoscopy. They haven’t used the stiff rubber tubes in many years. That is a dated technology, probably went out in the 1980s. They now use a soft flexible rubber tube so that whether it’s a Pouch or Colon being  scoped, it makes no difference. They can scope a Pouch and I have had mine scoped every year since 1992. I can remember the rigid sigmoidoscopies of the 1970s done with no sedation. Those were fun (not) 😰

I had a CT scan with contrast in the ER this year and the radiologist wanted to put contrast into my pouch with a large foley catheter.  I said NO WAY!  Terrified of undoing all of my surgeons great work.  The radiologist advised that this procedure was done all the time and would not hurt my pouch.  You know something, he was right!.  My pouch and little bit of rectal cuff was able to hold a litre of contrast (1000 cc) so they could do the CT scan.  No problems, no pouch damage.  I'm so proud of my jaypea.

The only thing about CT Scans with me is that they don't like for me to have them anymore because over the years of suffering with UC I had too many. I'm glad that it worked easily for you and there was no damage done. My GI guy wants to do the flex sig, and I'm worried and scared because the first time I had one was without sedation, and I was in so much pain that I was screaming. Now, for anxiety and pain purposes, I request to be sedated and my doctor understands why and accommodates that as well as giving me some sort of panick medicine through the IV before anesthetic because I go into panick attacks every time despite knowing what to expect. Most people here are saying the flex sig is safe and won't do any damage, and my doctor says it's alright too. It helps knowing that there are those who have had it done and can even minutely appease my worries over all this. Being in the first two years after surgery, I'm still relearning how my body works and what I can and can't have done.

They will do conscious sedation usually with fentanyl and versed but you need to have someone drive you home from the procedure.

I have had it done with and without sedation. I prefer it done with sedation but the pain without sedation is nothing like what the old colonoscopies with the rigid non-flexible tubes were like back in the 1970s. They didn’t believe in sedation for colonoscopies back then. I was just a kid but I was expected to suck it up and deal with it and that’s what I did.  It was extremely painful, but you dealt with it because sedation wasn’t an option nor was a flexible tube.

I am worried about this also! I move cities pretty often and haven't had a GI or a scope for probably 15 years. I am now living in a small town, and because of some complications, went to a general surgeon who now wants to do a sigmoidoscopy. I am not sure what kind of experience he has with J-pouches and am worried that he will inadvertently do some damage. Is it possible for a scope to go wrong?

An endoscopist would have to be very rough to do much harm, but it also won’t do much good to be someone’s first pouchoscopy, without adequate experience or training. I wouldn’t want anyone who didn’t know that it’s called a pouchoscopy, for fear he’d go looking for a long-gone sigmoid colon. Maybe it’s time for an excursion to the city, Gen.

Thanks for your reply, Scott! I'm not convinced that there's much to be learned by a scope at this point, but, because I'm moving again (even further away from a major city!), I won't have another chance for over a year. Just trying to decide if I should wait a year, or more, to see an expert, or risk it with a less-experienced generalist.

Gen, without any symptoms the risk is probably modest, but it isn’t zero. If you had dysplasia previously then the risk is considerably higher. Most folks here have pouchoscopies more often than I do, typically once a year or two (it’s probably been at least 5 years for me). The two main things thay’d be looking for are 1) cancer or dysplasia in the rectal cuff, and 2) significant inflammation without symptoms. Both of those are well worth knowing about, but a general surgeon with no pouch experience isn’t the best partner for this. In your shoes I’d skip this “opportunity,” not worry about it, and get a scope when there’s a reasonable opportunity to do so (by a qualified practitioner).

Gen,

As Scott mentioned, scopes are done annually if you have a pre-surgical history of dysplasia or cancer, or have had chronic inflammation observed on past scopes, both of which expose you to a risk of cancer of the rectal cuff, which is colonic tissue.  Ileal cancers are far rarer. I have check marks on both of these risk factors, so I have been indicated to have annual scopes by my doctors and I am due for one in May  Without one or both of these factors, it's probably okay to have one done every 3-5 years.  You definitely want someone who is a GI and a pouch specialist or at least has some pouch patients, and if you need to I would venture to a city to do that.

You’ve probably had your procedure by now, however I’m posting in case anyone is going through the forum looking for similar advice.

i have a pouchoscopy (aka flex/sigmoidoscopy) annually since 2002 so I must’ve had at least 16 (I say at least as sometimes issues have occurred requiring extra scoping). Anyway, I initially I had light sedation as I had bad memories or colonoscopies prior to surgery. However with sedation was so time consuming as I was made to wait in the recovery room for several hours after the procedure, then had to be driven home and I was meant to have someone with me for 24 hours afterwards, couldn’t t drive etc. Sometime ago I fdecided to tough it out and you know what - it’s really ok. A bit uncomfortable at beginning and end and sometimes I feel like I’m goi t to burst with all the air pumped into me but the benefits outweigh this - I can get dressed straight away and drive straight away and depending on the day/ time I go back to work too. It’s really nothing to worry about and I’m no hero haha! I detest my annual upper GI endoscopy with a passion and if they offered to hit me over the head with a mallet to put me out I would take it! 

Good luck x

Absolutely. I had a Sigmoidoscopy a month ago and they took a biopsy to check from Chrons, I got to watch it all happen! Even though I was sedated I stil remember seeing the camera going up my pooper! haha ! I got to see the inflamed spots and it was really cool to see what the inside of my pouch looked like! 

I have had my pouch since 2004 and recently had a flex sig with my GI doctor.  This past year I had been feeling pretty sick and knew that I had to make an appointment, (I had not had a scope done in 3 years).  I was able to have my procedure done without any sedation.  My doctor was able to show me my inflamed spots  and was able to take biopsies.  It only lasted for about 5 minutes and I really felt fine afterwards!  I was so excited when it was over and thought wow, that was easy!  I hope that this is able to ease your fears.

 

As far as the value of being awake to see the inflamed areas, this is 2019 and any GI doctor worth his or her salt takes digital photos, maintains them in your file and compares each year’s scope pics with the prior year’s, otherwise inflammatory trends would never get noticed. Therefore I make an appointment with my doctor a week after the scope and we analyze the pics together. I have no need to see the pics as they are taken. They aren’t going anywhere. My GI doc emails me the pics and I have them on my phone if you want to see them.

Sylvia- although I don’t recommend propofol for reasons I have already explained, I believe they let you drive afterwards as there is no lingering effects when you arise. The whole point of why doctors use Propofol as a sedation option in the first place, despite its hideous retail expense compared to conscious sedation, is the facility (Yale for example) makes more money because they can move people out of the recovery room more quickly, and do more procedures in a day, thus making more money. Plus they have an anesthesiologist on staff so the cost to them isn’t as great as it will be for you/your insurer.This is exactly in response to your point about wasting of time, but I personally don’t believe someone should agree to submit to Propofol for those reasons. In your case, the Yale methodology of doing mass scopes would probably work well for you. Would also assist their profits as they buy up the rest of New Haven that they do not already own.

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