Dr. Shen's appt

I have not have had it, but I have a question you might ask Dr. Shen. If your pouch ischemia is due to adhesions, how is hyperbaric oxygen a long term answer? I can see it possibly offering short term improvement, but unless you are planning on lifetime treatment, I do not see it being a fix. Or, is Dr. Shen proposing it as a diagnostic tool: if it works, you know your issue is pouch ischemia? Either way, surgery sounds like an end result.

Jan

Hi Jan...you know what...I was thinking that on the way home the same thing...but I was so intend on listening to Dr. Shen I didn't even think of that.  I believe now that I replayed the appt. in my head..that he is trying to rule out crohns because he feels confident that it isn't but at the same time he did put in his remarks that possible humira treatments in the future.  I am schedule for a scope in July and I just got an email from him saying that they are working with the insurance paperwork for preauthorization for the oxygen therapy.  My thoughts are that if the ulcers are showing significant healing and my symptoms are decreasing that he is right on target that the adhesions are "strangling" the pouch for lack of good blood and oxygen flow.  If the ulcers aren't showing signs of healing then perhaps crohns/ and/ or needing surgery to remove those suckers (but as we all know, only more will come back) Dr. Shen also made an interesting comment on how he just finished a study on patients who have had multiple surgeries after the initial j pouch surgery how those patients seem to suffer more with pouch problems.  Also taking too many pain meds will destroy a healthy pouch.  (wt loss and wt gain too!)  ugh...I have had it all.  Thank you again for your input.  I can't tell you how much I appreciate someone else helping me to think ... my brain seems to function at 1/2 its capacity.  Hope you have a beautiful Easter weekend wherever you may be.  My area is going to be cold and wet perhaps snow again.

Patti..

Makes sense to me. Although, considering biologics does not necessarily mean a Crohn's diagnosis, since many of those drugs are used for UC too. But, realistically, it is all about what works, not what you call it. It is important to know if this is a structural issue or IBD related. I believe that when Dr. Shen spoke of pain meds ruining a healthy pouch, he was referring to NSAIDs, not opiates and acetominophen. 

Sorry about your weather. Maybe you can send some wet to the west coast. Here in California we are in our 4th year of the worst drought on record, and our snow pack is the lowest ever recorded.

Jan

Hi Jan...yes you are right...humira is not just for crohns, Dr. Shen informed me that it can be used on both..so that's good in a way.  Although as powerful as humira is..I surely would want that to be one of my last resorts.  Yes he did clearly state that it is a certain group of pain meds and of course, they are the ones that I took regularly for fibro, arthritis, lupus etc.  o well..if only.  PA is a beautiful state with its 4 seasons but my winters here are hard.  Although today went to 70..but 4 inches of snow by morning!!! Thank you again.

Patti

what was that certain group of pain meds?

Patti, the reason I went on biologics was specifically because I could no longer tolerate NSAIDs for my arthritis. They worked great for that, but caused liver inflammation and pouchitis. That was 10 years ago. I have tolerated biologics very well, with loss of effectiveness over time as my only issue. Now I only use NSAIDs for very short periods to try to get out of an arthritis flare. 

One question though, since you were treated for lupus before, does that mean you cannot take biologics? One of the side effects is a possible lupus-like reaction. But, it is not real lupus and goes away when you stop the med.

Jan

Hi Jan..just started feeling up to getting on the forum.  I haven't been feeling good again.  I swear my body beats me up whenever I get tired it just seems like I shut down.  Anyway, I'm waiting for the insurance to authorize my oxygen treatments...looks like they don't know what to "code" it since they aren't familar with this kind of treatment for J pouch ulcers.  Just another stumbling block.  My family and I talked about this short term treatment (if approved) and as much as I am nervous about more surgery, Dr. Shen really feels that removing as much adhesions/scar tissue is the answer to allow the blood flow back to the pouch.  Have you ever heard of this being done.?  Dr. Shen feels Dr. Remzi should do it at Cleveland Clinic.  Last time I had surgery, the surgeon cut into my small intestine and I needed repair on that and spent a week in hospital on n.g. tube and i.v.s.  I am a little nervous.  Hope you got rain!

Well, if ischemia is your problem, hyperbaric oxygen might prove diagnostic, but not a long term Treatment. Still, that info would be very useful. If adhesions are the reason for the ischemia, then release of those adhesions would be curative. Otherwise, pouch redo is the solution; removing the pouch with poor blood supply and constructing a new one. Dr. Remzi has pretty vast experience in this aspect.

Jan

Jan..yes Dr. Shen did call the ulcers ischemia.  I talked to the director of the hyperbaric center and he said it is a small chance that insurance would cover such treatments since that hasnt been an approved "code" according to insurance and medicare.  He said that Dr. Shen, if willing, maybe able to convince them that the ulcers are problematic wounds that haven't responded to meds in 3 years.  The director also confirmed that they are waiting for approval to study the therapy on u.c. patients but that will take years to get funding.  I wonder what the success rate is by just removing scar tissue/adhesions, if this will improve pouch performance?  Has anyone out there have success with this?  Thank you for support.

Patti

Dr.Shen just kind of suggested we maybe try hyperbaric oxygen therapy, for a tip of jpouch leak. Not sure what or how but told him we need to discus this and if it even makes sense?? im not sure how this would even work??

And, of course, some doctors are great for throwing out new ideas without proven efficacy, assuming that "save the pouch at any and all costs" is the favored plan. But, for most of us, there are both financial and tolerance limits on how much time, money, and effort we are wiiling to spend on an uncertain outcome.

Sure, it is up to you whether to say yes or no, but I think that Dr. Shen just wants success for you. My concern about hyperbaric oxygen therapy is that it might improve oxygen to the tissues to allow healing in the short run, but there is nothing to prevent future ischemia in the same area. Who wants to lay in a hyperbaric chamber for hours every week for an indefinite period, while the bank account drains?

Jan

So basically, is that what consists of this chamber as far as time goes? I would need to do it for like 2 hours a day once a week for however long? I have heard at least 20-30 treatments? I cant take half day off of work every week, for one I dont have that much vacation time and two, the vacation time I do have I want to spend with my children. I am emailing him back and telling him this is not an option for me.

Takes about two hours per treatment. That does not include your travel time of course.

http://www.mayoclinic.org/test...-expect/prc-20019167

Jan

Hi Pouchomarx...I was also told to try this hyperbaric oxygen therapy by Dr. Shen...but in the long run he is also certain adhesion surgery too.  I still am waiting for some kind of approval from insurance co. yet.  It appears that cleveland clinic has a chamber in southpointe hospital, but there is no way I can go every day, for at least 2 months, to 2.5 hour drive from home on top of that.  So I found a hospital closer to me, but they have never had a patient with j pouch to get proper "insurance codes" submitted for approval.  It is a very costly therapy if not approved by insurance coverage, but even if I have to pay a co pay it would pretty much bankrupt my acct.!!! So I'm not sure what do to either.  I am already scheduled to have adhesion surgery in June so I guess if I don't hear from insurance co. I will go ahead with the surgery with hopes that this helps with the problems I am experiencing.  Good Luck to you with your decisions.

Patti