Hello, EG Beth. I am so sorry you are having so many difficulties. It sounds like one thing after another. Have you managed to get an appointment with the doctors at the Cleveland Clinic?  You sound very brave and strong to have weathered so much already. I hope you continue to have strength to be tough and keep up the push for a surgeon to figure out why your pouch grew so big, and fix the resulting issues you have. Thank you for posting the X-rays. They might help someone else as well. Keep everyone posted how you manage. 

Thank you so much for the encouragement and such kind words! No, I don't have an appointment set with the Cleveland Clinic yet, but hope to in the next 2-6 weeks (sooner the better). My GI doctor who’s preforming the un-prepped colon/pouchoscopy on 8/24/16 use to work at the Cleveland Clinic and can get me in faster than if I made the appointment on my own. 

Once we have an idea of what needs to be done, or if my doctor is unable to find the cause of my pain and obstruction; my doctor will call and make me an appointment. 

Since I live so far away (Utah) I am hoping to have some kind of plan in place before flying out; if possible that is. I have been too sick to work for 5 years as I have had a surgery averaging every 4 months. Needless to say money is tight and making multiple trips would be extremely hard. I have already spent over $16,000 out of pocket on three trips to the Mayo Clinic for some related and none related health problems; such as my Thyroid Storm in 2013 where I almost died.

Anyways, I will keep you all updated on what happens and any test or surgeries that might come up. I have been working on a blog to tell my story; currently have more about my TMJ joint replacements and some GI studies. I will work on it over the next month so check back. I am not the best writer but i am trying not to let that stop me from sharing my story. 

Here is the link to my blog: http://bloggeduplife.blogspot.com/

*CLEVELAND CLINIC LIVE MESSAGE CHATS...TIPS TO HELP GET IN...

Notes from the Live Message Chat I had with the Cleveland Clinic Support...

EG Beth: does it normally take a while to get an appointment? I will need to see a GI surgeon.

John: While I don't have absolute specifics about availability, GI physicians usually have more openings than some of our other specialties.

EG Beth: great! crossing my fingers!

EG Beth: I have a GI doctor here in Utah that can send a referral to your hospital and in fact has wanted me to go to your place for sometime. Will getting a referral help speed up when I can be seen?

John: It will certainly make the process go a lot smoother. I would suggest that your physician contact the Cleveland Clinic Referring Physician Center 24/7 hotline — 855.REFER.123 (855.733.3712) — to schedule, confirm or cancel patient appointments, obtain assistance in resolving service-related issues, or connect with Cleveland Clinic specialists.

John: http://my.clevelandclinic.org/...onals/referring.aspx

Keep you posted and will answer any questions you might have,

take care

Hello, EG Beth. You have probably tried everything when you have trouble with BMs, but maybe this can help. Try gently and carefully leaning back against the toilet tank, as if you were going to lean back in your favourite armchair. Just rest there for a minute or so. This works for me as it seems to straighten out my abdominal area where the j pouch is, and gravity takes care of letting the stool come out. It doesn't work in five seconds, more like a minute or two. The contents of the pouch seem to shift, and empty. Another member, DGTracy, said this leaning back works for him too. Also sitting up very tall and straight on the toilet seems to work too. Slouching on the toilet, something everyone here probably does because it's exhausting and frustrating to push and strain, bends your body in the middle and scrunches the whole area where the j pouch is, and everything can be stuck in the bend. Try leaning back. I hope this helps.

Thank you for all the replies, I will answer more in a moment. I Just found out that I will be going to the Cleveland Clinic on Sep 7th. I was wondering if anyone knows of a cheap place to stay as the on campus wants $170 with discount. thanks

I saw your post on another topic and again on this one about your impending trip to Cleveland. It sounds like you've had a rough road and I can certainly empathize with a lot of it. I am 47 and have had a 15 year nightmare with IBD/RA. I was diagnosed and treated the first several years in San Diego and then moved to the suburbs north of Detroit. I got significantly worse in 2010 when I had an emergency total colectomy and then followed with the j pouch in 2011. The pouch never functioned properly for me either and I went through more medications, therapies, surgeries and complications locally until heading down to Cleveland Clinic to see Dr. Shen starting 2014. He is the best! And the GI dept at CC is far better informed than the best hospital you could go to in most states. But even though I got better info about why my pouch wasn't working, we still got to the point where it wasn't fixable. (Laundry list of pouch failure complications, in order of importance: pelvic floor dysfunction, chronic cuffitis, chronic pouchitis, enlarged pouch, extra-intestistinal disease manifestations.)

So I just had my j pouch and rectum removed and received a new k pouch from Dr. Dietz at the Clinic this spring. (He has since left CC for University Hospital but had been there a while so you will see him mentioned on the site if you haven't already.) Now, however, with such unusual "plumbing," no doctor in Metro Detroit will touch my GI issues -- and I'm still having problems, so going back and forth to Cleveland is becoming more regular. (I am driving down tomorrow so I can be there for appointments on Wednesday.) The hotels in the area usually offer a Clinic discount, but it doesn't matter much when they are all so expensive. I've also seen their rates go up considerably more than the average hotel prices anywhere else in the last two years -- they know they have a captive audience! The new Holiday Inn was the best price the last couple times I booked, but just check online for your dates. 

Your other post mentions that you are going for a surgical consult... and also that you are booking a trip for two weeks. I may have missed something, but that seems like much more time than you'd need. You also mention the consultation is for the removal of your rectum and possibly your j pouch -- this is also confusing, as having a j pouch requires having a rectum (on the other hand, you could remove a j pouch without removing the rectum.) Also, when you referred to removal in this post above, did you mean to suggest j pouch removal and your small bowel connected directly to your rectum? Since the small intestine doesn't hold stool on its own, the alternative is usually another pouch (internal or external.) I would just suggest you make sure you know what to expect as far as appointments and tests and days you'll really need to be there. The nurses are usually available by phone for questions and the scheduling people can be really helpful in getting appointments grouped together for patients traveling from out of town. If you have any questions about the place, hotels, travel, or surgery there, feel free to direct message me.

Best wishes,

Jennifer