just a quick update

The remicade was not suggested by any surgeon. The one consult I had in the hospital, the surgeon didn't want me on it, especially if I was considering surgery. But my GI doc wanted to try it again since it worked in the past and really nothing was working in the hospital for a while. So it was a case of GI doc that ive been seeing for a while vs new surgeon. I was pretty out of it while in there so I was willing to go back on it just cause I needed relief and wanted to try anything. My parents were also there and just wanted to see me better (plus they trusted my GI doc more and are still coming to grips with the idea that I would get surgery, so they were more supportive of the GI than the surgeon).

Figured that it would hopefully get me good enough and then I'd stop prior to surgery.

A bit disconcerting that i'd have to be off it for months though. I was hoping I would just let one dose lapse and have it cleared enough from my system.

Thanks again for the encouraging words.

So it's 3:48 in Cleveland and I just woke up to use the bathroom. Stomach was upset. Think it was a peach or crate and barrel that I had earlier with my parents. Taking a little ecig smoke break before heading back to sleep and figured I'd post an update.

I met with a surgeon yesterday at Johns Hopkins. He seemed like a nice and honest guy. Jonathan Efron. He said they do about 4 to 5 jpouches a month. Think he is in charge of the colorectal department. They treat about 60 percent cancer and 40 percent IBD patients.

He advised against surgery at this point if I can stay in remission on meds. I liked that he was honest about it. He also said if I do get surgery elsewhere he would be happy to help me with any complications that come up, which is great if I get the surgery a good distance away. He mentioned complication rates as high as 40 percent - both short and long term. Stapled technique, laporascopically. He recommended 3 step If I had it done with him given my steroid and remicade use, since that has a better chance of less complications. He said I'm a baby compared to a lot of the patients he saw. His main concern is that I may not be happy with quality of life given I don't always flare and have good days as well. All in all though, he seemed like a stand up and honest guy.

Have my appt with Dr. Dietz in a few more hours at 8am. We will see what he says as well. I am surprised at how run down cleveland is in the surrounding area. Will say that the hospital looks massive though.

I know my parents aren't keen on surgery nor the distance, but they support me regardless. It didn't help that Dr. Efron said the Cleveland clinic in Florida is just as good (he did his training there) since the Florida clinic is about an hour from where my parents live. I figure the Cleveland proper one is a bit better than the Florida branch.

LOL well of course the guy is going to tell you that the place where he trained is just as good as Cleveland... Sorry, I'm a cynic about these things...

Good luck with Dr. Dietz today, let us know what he says!

On the way back from Cleveland. Man I'm tired. Parents are driving but didn't sleep too well so I will take a nap in a bit.

Anyways, the gps took us out another direction from Cleveland. Wow what a difference. Beautiful mansions, wooded, just in general really pretty.

I was pretty impressed with the Cleveland clinic. I can't get over just how huge the hospital area is. It's like a small city of just hospital buildings. Seems very high tech as well. My questions were filled out either on a computer or a tablet they gave me. Not quite minority report but a step up from what I'm used to. :)

The nurses and assistants all seemed super nice and friendly. One thing I noticed when answering forms and what was asked of me is they seemed a lot more thorough in wanting to know everything and how I feel. More so than johns Hopkins.

Dr. Dietz was very polite. His assistant before hand who was a resident was professional, but not super friendly. I try to smile and crack jokes just to ease the mood. I mean I like to be upbeat and I don't think I saw the resident crack a smile even once. He came in second after one of the nurses who was super friendly. The resident looked over my medical records I brought and asked a good deal of questions. Then afterwards he synced up with Dr. Dietz before he came in just to fill him in on my background.

I liked Dr Dietz. He seemed nice and was candid. I also liked how much data and research CC has following their patients since the 80s so the statistics he was able to provide me were in relation to getting the procedure there.

He was a tall dude. I have to say I was a bit surprised how dirty his shoes were lol. Looked like he just got out of surgery. Either way, he seemed to know his stuff. The way he described the outcomes and risks seemed much more optimistic from his perspective than Dr. Efron. I don't know if Dr. Efron is more realistic or if it's just because CC has done so many of these and knows how to minimize things. Even Pouchitis statistics seemed to be pretty small in the case of chronic pounchitis. Dietary restrictions in his mind based on patients experiences were very minimal. And Avg bms once healed us 4-6.

He too recommended a three step. He said at CC they are starting to do a lot more 3 steps as opposed to 2 steps since many patients are coming in on steroids and biologicals and this minimizes complications.

He didn't say I should or shouldn't get surgery. He said he never likes to push anyone into surgery. Based on what I wrote he said that I seemed to be doing okay. Really he and I agreed if biological meds work, great. The steroids again are the big test to see how I do as I continue to taper off them.

Speaking of symptoms had some bad rectal pain, urgency and tenesmus the past couple days. I skipped a couple of doses of canasa so that's my fault. Still, I do not feel super awesome when I am on the toilet for a good 20 minutes which I was, just after lunch. Had bad cramping after eating breakfast. Then struggled to empty my bowels and my rectum feels all raw now. Still a bit uncomfortable from the earlier cramping. Maybe the steroids are not working as well now that I tapered by even just 10 mg.

So, the only negative - he only does open surgery. He said he prefers it over laporascopically since he feels he can get a better surgical outcome and do better internal suturing. He does the Stapled technique as well. It sounds like hand sewn is rarely done, even for proctitis.

He said he typically doesn't see issues with patients when it comes to hernias, hernias or blockages, although blockages do happen up to I think 20 percent of patients, although they are manageable and extremely rare to require surgery to address.

He also didn't act like chewing or eating food had to be handled much different once fully healed with a jpouch. There are some fiber considerations for the Ostomies but he didn't act that way for the final jpouch. Again I am not sure if he is just overly optimistic or if that is the Cleveland clinic's experience with patients.

I also couldn't get an exact number of how many jpouches he did. He said in the hundreds but didn't know the exact amount. He also told me if I preferred laporascopic surgery there are others there he could recommend me to. I still have my appointment with Dr. Remzi in October and I believe he does laporascopic. I'd prefer not having a huge scar if I could help it.

Thanks Marianne! Yeah basically a wait and see approach. My parents are getting more comfortable with surgery but are more scared of it than I am. Granted I had quite a bit of time over the years to research and accept/learn about it.

My parents are from Europe and my mom is a huge worry wart. She immediately jumps to questions like will I live a long life still after jpouch. They are just very old school in their thinking so they need to be reassured by the surgeons and me a lot.

Plus my dad is on this whole kick of why do only the top industrialized nations have the most IBD cases. He's convinced it's the chemicals in the food. And they're always trying to have me drink chamomile tea since that's anti inflammatory and what they grew up with as kids in Europe to treat issues. So you can imagine. :)

But yes thank god they are here though. Makes the consults and travel much easier. I know they still prefer if I have surgery, that I get it local to either them or my place, but ultimately they want me to choose what I feel most comfortable with.