Hello! I just found your board tonight after deciding to take matters into my own hands in a desperate attempt to help my sister. So please forgive my ignorace of the technical lingo.

My sister suffered from UC for years and had a j-pouch for about 9 years. And having periods of chronic pouchitis and suspected blockages for most of them, the suspected blockages frequently after back surgery last January. At which time she had the feeling something had changed and food wasn't moving. But her surgeon and doctor told her that wasn't likely. Since October, she has had it at least 4 times and been hospitalized three times. The usual treatment she's been receiving, I believe, is cipro. She is on high doses of pain medications daily (dilauded, oxycodone), not only for pouch related pain, but also from previous back issues. I know she has not been getting the care she needs, for starters is the fact she's been the one to inform her doctors/np's about pouchitis, some of whom had never heard of it before. What has become the normal course of treatment is for her to get sent/go to the ER for fluids, as she has trouble staying hydrated, and pain management every few days. They just dose her up and send her off. She's not been in the regular care of a gastroenterologist. Don't ask me why. She's basically been told they think she has scar tissue or adhesions and there isn't anything to be done. To be fair, I don't think she does a good job of asking questions or pushing for what she needs, even after we make up a list ahead of time.

Currently, she is once again in the hospital, this time for an possible obstruction that happened days before Christmas. She had bloating, extreme pain, vomiting but no eveidence of one was ever seen on film. After a few days in, she was feeling better and checked herself out a day earlier than the dr seeing her recommended because whe had been looking forward to traveling to see me for Christmas for months. The five days she was here we took her to the ER twice for pain management as she got to the point of sitting in the corner rocking back and forth in agony for hours. The bit of reading I've done on here shows me she probably never received the education she needed about her pouch. The surgery was done at OHSU in Portland, OR, and her insurance wouldn't let her be there for more than the initial surgery. She was forced back into local care that I don't think was well prepared for it, so I think she sort of fell through the cracks, so to speak. And still has as her doctor swithced practices and no longer took her insurance. No other doctor would take her on until finally her old doctor asked a friend as a personal favor. But the new doctor is in a different town, with privlidges at a different hospital, and only works two days a week. So she ends up seeing someone different each time in the hospital. Anyway, after an agonizing trip home for her, and my mom, she's back in the hospital. This time my mom demanded the ER that they do more than dose her up and send her on her way. She's been in a few days and has finally been partnerned with a gastroenterologist. They did a gastric emptying test today as they still haven't been able to find any blockages and after 4 hours post eating, all the food was still basically in her stomach.

To top it off, she's struggled her entire adult life to try to work, and after years of not, she's been attending school and should be finished soon, assuming she can keep her health from interfering more. The new term is set to start Monday and she can't be there as she's still in the hospital. She already had to take a years leave from the two year program due to the back issues and she indicates they are losing patience with her. So she's under a ton of stress from that. As of tonight, she's extremely depressed, in major pain (and trying to deal with pain meds being reduced as she's so tolerant to them), ready to throw in the towel saying she just wants to die and get it over with. Although I don't agree with her, I do sympathise after watching her live the last ten years in daily agony.

What little I've seen tonight shows me there is a lot of hope. I just need to get it in line quickly. At this point, she won't do it herself. And I'm 3500 miles away, at least until next week. I'm interested in learning more about Dr. Shen, but feel like she needs some immediate intervention from someone local before she gives up completely. She's in the Portland, OR/Salem OR area.

Any advice or insight would be appreciated!

I would call Cleveland Clinic / Dr. Bo Shen and have her records faxed, emailed or whatever asap. They can do a remote consultation/evaluation. I would do it asap...in fact, do a "search" on this site for Dr. Shen. One forum member refers to him as J-pouch Jesus. He is my GI when I need CC care, he is wonderful and I do consider him a genius in his field... You can even email him...his email address is shenb@ccf.org He is really good about returning emails. Good luck to your sister...you're great for trying to run interference for her!

quote:

And having periods of chronic pouchitis and suspected blockages for most of them, the suspected blockages frequently after back surgery last January. At which time she had the feeling something had changed and food wasn't moving. But her surgeon and doctor told her that wasn't likely. Since October, she has had it at least 4 times and been hospitalized three times. The usual treatment she's been receiving, I believe, is cipro. She is on high doses of pain medications daily (dilauded, oxycodone)

Antibiotics & pain meds can cause constipation and may be a factor in the blockages.

Agree that she should be under a good GI's care.

First off, congratulations and thank you for being a kind and caring sister...As many of us here know, it is a rarity among cronic pouch people....
Second, I think that you should send your sister the link to this site...she could read the posts that you found interesting and ask us some of the questions directly as well...it helps a lot to not feel so isolated and alone in these ongoing battles...
Third, she needs a full work up and yes, a remote consult with the Cleaveland Clinic.
Fouth, what is she or isn't she eating? Some foods can block us up, other give us severe cramps or runs and still others can calm the whole thing down. Does she keep a food journal or diary? Does she have food allergies? Is her pouchitis diagnosised or assumed? Sometimes it can be other things...same for the blockages. Get her to stop all foods except for one...for example chicken or fish or meat...just strait protien (no milk products) and then see how she feels after 2 meals...then try a meal with nothing but pasta (oil or butter ok) but nothing else...2 meals and write it down...etc
She might be able to eliminate foods that are causing here some of the grief...often milk products, white flour, sugar, fats etc and certain fiberous foods (accumulate in the pouch, also known as a rootball!)
Anyway...start out with that and come back for more advice as time goes by and let us know how she is doing....
there is hope for most of us...
Sharon

Thank you for the replies. The very first thing I did was call her about finding this group and sent her an email with all the info. I was hoping to come back on today and find a post of her correcting my details but I suspect she's still not feeling like it. I do think she's been very isolated through all of this, enough that she's reluctant to seek out help. One doctor recently asked her if she was involved in any colitis support groups and she replied no as she doesn't consider herself to have colitis any longer. I'm not sure she thought about all the others before her who are in a similar situation and that they might be available for support.

As for the antibiotics and pain killers contributing to the situation, we are aware that is the case. It's just been a juggling act of how to fight the infection and control the pain versus the pouch. She also has frequent sinus infections (MRSA, to boot), so often the antibiotics are not even for the pouch in the first place. Yet she almost always has a pouch flare after a sinus infection.

Personally, I've noticed correlations between what she eats and how she feels. She swears there is not any and any attempts at food diaries or diet changes only last a few days at most before she writes it off as pointless. I've tried to tell her before that it's likely to take time to sort all of it out and keep it up but she doesn't want to hear it from me. I think she would listen more from someone who's been there. Another reason I hope she makes her way here eventually.

Pouchitis and blockages are usually assumed as no one ever seems to be able to find proof when they look. The rootball sounds intriguing to me. Is that something that could be seen on film? Occassionally someone thinks they see something but not sure what it is so they assume it's a partial blockage.

I'm going to call Cleveland Clinic tomorrow and see what needs to be done to start a remote consult.

How does she feel about going to an ileostomy to give her pouch a rest? If she finds that the pouchitis and other problems go away, maybe she'll opt for a permanent ileostomy. I don't think pouchitis is a problem for ileostomates.

Has she been checked for strictures and/or adhesions? Both could cause blockages.

Since you didn't mention it, I'm assuming she isn't experience bleeding, right? If she is, she should be examined for cuffitis. The treatment is different if the dianosis is cuffitis. Another thing to explore is irritable pouch syndrome. I believe IPS is treated with antidepressants.

I hope she finds something that works for her.

kathy

I totally agree with Kathy. 9 years is along time to suffer. My chronic pouchitis was just as bad as my UC was. I went to an end ileo and got my life back. Do I love having an ileo...no. But it was worth the trade off not to be sick everyday. Good luck to your sister...hope she finds us.

I called the number for Dr. Shen's office today. The receptionist directed me to the online second opinion website. Yet from reading there, it seems like after you fill everything out and transfer records, they send it to the dr they feel is best for the opinion. Is this the right way to go about this? Will it really reach Dr. Shen or what are the chances it will go to another doctor in the clinic. It seems they're all good, but we want to be sure she's getting the best opinion at this point.

Thanks!

Many years ago when I was having problems I refused to leave the hosptial until something was done for me. I mean after all in the ER was a big sign that said that if we cannot help you we are obligated to get you to the facility that can. So, after countless trips to the ER and seeing that damned sign I decided to take action and refused to leave. My husband got the social workers involved and I told my GI whom is pretty famous in her own right that I wanted at that time to see Dr. Fazio at the Cleveland Clinic ( j-pouch Jesus at that time). Well, they all arranged a emergency visit for me a week later. I mean I had to get myself there but at least I had an appt. My husband literally took me from the hosptial and drove 10 hours to get me there. If this was my sister I would forget about a phone consult and get her there or tot any other IBD center with someone whom is experienced in pouch problems.

Cataja - I've wondered to her before it that might be a solution. So far she's not interested. And seeing as she's never had any education about a pouch nor, it sounds, correct medical care reguarding it, she wants to give that all a try first. But it's nice to know it worked for you.

The update is she's home from the hospital and feeling better mentally. She's excited to hear about what I've learned. I sent her the link to this group again so hopefully she'll find you soon. She wants to join in and learn from you all. After discussion with my mom and sister, we've (espcially my sister) decided she'd like to travel to Cleveland Clinic instead of a remote consult. Given the past few years, she has a immensely complex medical history, and more importantly, lots of questions. The one-on-one interaction of a on site consult is much more appealing. She's seeing her primary care tomorrow and going to see if she'll help facilitate getting an emergency consult apointment set up soon.

Thank you all for giving us some leads. For the fist time in a long time she feels hope. Which is huge!

Big Sis

My first appt with CC was set up by my local GI as an emergency appt. He had recommended Dr. Brett Lashner, for me to see. As it turned out, the earliest appt available was with Dr. Shen. Dr. Shen is absolutely amazing, but I do know that all the dr.s are great... It just so happens that Shen is their bright and shining star. You may want to send Shen a personal email and he can give you his secretary's phone number to schedule an appt...It used to be a lady named Lavelle. I don't know if it still is or not. AT ANY RATE - she will be in great hands regardless of the GI.

That's great news! Cleveland Clinic has helped many people on this site and hopefully your sister will be in that group. Please let us know how things are going for her.

Let's hope it's a real easy fix.

kathy

Cleveland Clinic definitely sounds like the place for your sister. I wanted to mention that you might also suggest to her that she should see a pain management specialist if she does not do so already. You mentioned that she is on high dose pain meds for her back.
My brother (who does not have a pouch--I do) suffered severe burns (he is a fireman) and was on pain meds long term. They caused huge GI and gastric emptying problems for him. He was in severe gut pain and suffered "psudo obstructive syndrome" where his bowels jsut stopped. Because of his burn treatment and pain from the burns he needed the meds. A pain med specialist helped switch him to some other meds and that helped a bit with his GI problems but they were actually not resolved until his burns were healed and he was weaned off the meds (he had become dependent because of th elength of time on them--they expected that and dealt with it). His Gi tract and slow emptying issues resolved after that.
Your sister is in a different situation if the back pain is chronic but a pain med specialist may help her detrmine if some of the GI issues are from that and adjust th emeds.
Food would sit in my brother stomach undigested for days.
I hope your sister gets relief soon--she is lucky to have you.

lk - Interesting about your brother. It sounds very similar to my sisters situation. The pain meds have been brought up as a probable contributor to the situation before and more than once she's had her dosages cut way back. Yet she always seems to end back up again. She's finally with a pain clinic as of today (as with the GI, not sure why she's not been with one up to now)so hopefully they'll help her with that. Dependence will probably be part of it as she's been on so many for so long. Her back at this point isn't much of the pain, so that is good at least. It is intersting that the emptying problem came along immediately after her back surgery a year ago. It's always made me wonder if a nerve was damaged that's contributing to the situation.

nys - I'll keep that in mind. Thanks for the tip.

She had a few appointments today. One with the pain clinic and one with her regular doc. The pain clinic recommended she have a laprascopic done to check on how much scar tissue she has which up till now has been assumed to be the reson for the extreme pain. Her primary doctor agreed with that recommendation. I didn't get a chance to talk to her today, just my mom's update. But I think she should go the Cleveland Clinic route first before undergoing yet another surgery. Especially as I've learned on here about all the things that have never been tried with her that could help.