Pouch pain at connection site

It'll help if we know a little more about your daughter. How old is she? What was her history (briefly) leading up to the surgeries? when were the surgeries? what's her frequency? what's her diet? What meds does she take? Does she have symptoms other than pain? What area of the country are you in?

Dr. Shen runs the pouch clinic at CC and is one of the best, but you may be better served seeing one of their surgeons. Dr. Remzi chairs their colorectal department and has been mentioned on this board many times. Either way the GI team and the colorectal surgeons work closely together there so one will tell you if you're best served with the other. Cleveland is also one of the few facilities that do pouch re-do's (if possible and needed) and is a good answer if you're really stuck and/or aren't that far. They also have a couple of regional facilities that can offer virtual consults back to the main center in Cleveland. I know there is one in Florida.

Saying that, depending on what area of the country you are there might be options closer to you.

She had her takedown last november, a 3 step, so her initial surgery was over a year ago now. Her diet doesn't seem to make a difference in how she feels nor does going to the bathroom. Frequency is fine.

We are considering Cleveland if nothing is done on the next visit with her current GI which is hopefully this week-waiting for them to call with an appointment time. I actually talked to dr. Remzi on the phone prior to her first surgery. I will maybe try contacting him again. I didn't know if it would be better to start at GI or go to the surgeon himself. Thanks!

Is this pain during a BM? If so, this sounds like a fissure. That pain is excruciating and can last for hours.

Jan

any blood, particularly bright red blood when wiping? Fissures can be nasty business, especially if infected. Most commonly described as 'passing broken glass'. Does it hurt more during and right after going the bathroom? Does she get any relief in sitz baths?

In terms of your actual question, you can call the main line at CC and speak with them. They're generally very helpful. You can also ask to speak with a nurse attached to the GI unit who might be able to steer you towards GI or Surgeons, and specifically give you a name. I'd caution you to be prepared for a wait if you haven't dealt with a major university system before. They book up well in advance. You can shorten the time by asking to see anyone in the department, including the fellows who all report to an attending physician and will generally pop in to see you after the initial exam. As an absolute worst case if you want to be seen right away you can go in through the ER during a weekday morning which is a way of jumping to the head of the line so to speak, but has fees and time associated with it.

No, going to the bathroom has no bearing on the pain. When it began, sometimes she would say it would help a little to go to the bathroom but then the pain would be right back shortly after. It is more of an internal pain--almost like spams maybe tugging at the connection site. I am hoping they will try bentyl or some kind of antispasmodic to see if that might help. In the meantime I guess we wait for them to call with an appointment. If I haven't heard back by tomorrow early afternoon, I'm going to be a pest and call. Seems that is the only way you get anywhere sometimes, unfortunately.

One other interesting factor is that it seems to happen mostly in the evening. Maybe her intestines are more active then??

OK, no pain with a bowel movement rules out the fissure. This is sounding like spasms of the sphincters. Could just be "one of those things" that means nothing and will resolve with time. But, it could also mean there might be something brewing inside, like a perirectal abscess. So, she does need to be examined to make sure it isn't something more serious. The fact that this seems to be worsening rather than resolving makes it more troubling. It could also be a nerve entrapment type thing, where it is not dangerous, but quite difficult to treat.

Worsening as the day/evening wears on is an important symptom and may have something to do with the fact that she is up and about during the day, and when she is reclined and still at night, it "resets" and has a chance to get better. Sort of implies there is irritation affected by gravity, movement, etc.

Yes, be a pest if they do not get back to you soon.

Jan

I would start by asking her current GI for a referral to Dr. Shen. That will expedite appointments. I would start with Dr. Shen because at this point you have no idea if it is a surgical problem. Dr. Shen is the pouch guru. He will figure out what the problem is. If he thinks its a surgical problem he will get you into a surgeon at CC very quickly. The doctors at CC do not leave patients suffering. Dr. Shen got me to Dr. Remzi in just a few days. In fact, I believe I ended up on Dr. Remzi's operating table getting a diverting ileo within 2months of requesting my local GI for a referral to Dr. Shen. So my initial appointment with Dr. Shen, various tests he ordered, surgeon appointemnts, tests the surgeon ordered... all of this was expedited.

You may be a bit uncomfortable asking her GI for a referral, but remember.. you owe her GI nothing. You need to seek the best care for your daughter quickly and the fastest route to Dr. Shen is by a referral from her local GI. You probably will need to "be a pest" with your local GI to make sure he follows through quickly with a referral.

Good luck. And PM me if you need more help in this process to get to CC. I'm experienced!