Patients with pouchitis have commented on Lactulose being implemented as a treatment modality by Dr. Shen. It's something I may need to try.

He is pretty amazing. The other stuff we went over for my other issues were swept under the rug by every other GI and Colorectal surgeon. I never met a GI that treats this area usually it is a Colorectal surgeon. At the pouch clinic he is going to do the non-pouch related stuff. Never been to a pouch clinic ;-)

Could you expand on your diet discussion with Dr. Shen. What other main suggestions did he have besides avoiding sugars? Thanks

Not low fiber but not a lot of roughage and no sugar. Pretty much an altered Paleo diet really. What I normally do up until this surgery. Started to eat to much carbs since they digest easy but it is not ideal for pouches.

Dr Shen is pretty amazing. I remember having both he and Dr. Fazio in the room together discussing my case and I felt like was in the presence of Elvis and the Beetles. Dr. Shen is one of if not the leading investigator in fields related to pouchitus etc.. You are definitely in good hands.

My pouch expert in Connecticut trained under Dr. Shen at the Cleveland Clinic where he had a 2 year Fellowship. In my conversations with him he reveres Dr. Shen like a rock star and frequently calls him to pick his brain on various issues, the most recent one being the timing of pouchoscopies (Shen says they should be done annually for all pouchers due to the rectal cuff cancer concerns discussed in other threads). I would say you are in great hands Vannessavy. Keep us posted on how the Lactulose treatment works.

I have a BCIR (like a kpouch) and I have been in pure hell if I went off antibotics. I was blindly being treated for pouchitis for 6 months when I never had it. It was bacteria overgrowth in my small intestine the pouch is fine. But I have to say I haven't taken any antibiotics since being here and started the Lactulose. I ate a salad and it all digested! I had no issues. Sometimes when I eat veggies I can't poop for 3 days. My pouch is actually working. I can say it hasn't worked like it should have since I had surgery in December.

I cried when I saw him. I feel like my life has a light at the end of the tunnel. All I can say before anyone gives up on any type of pouch they have, go and see him. I never had these options offered to me and in less than 2 days I am a lot better. I walked around Cleveland for 5 hours straight. I plan on returning since I have another disease that I thought was hopeless (IC) and after this I believe I will return to see other specialists. Maybe other things can progress. CC is awesome!

Now I need to figure out how to put Shen in my pocket or convince him to move in with me! I need a full time GI like some want an in-house chef!

I thought it was pretty cool Shen knows Boland. My GI that created one of the LYNCH genetic tests. He runs a GI lab in Dallas where I live and pretty well known for his work with FAP. I think Shen was shocked I had to go to him when I have Baylor literally in my back yard.

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Now I need to figure out how to put Shen in my pocket or convince him to move in with me!

Not sure if your husband will be thrilled with that arrangement lol.

Glad to hear Dr. Shen has helped you.

Dude, he'd be down! lol

I almost asked how I can put him in my pocket. It always makes me nervous when I find a good doctor. I instantly move on to "What if the die, move, retire..."

vanessa what is he doing for your ex-rectal area? I was supposed to see him the day after my last EUA a few weeks ago.. but I just wanted the heck out of there and couldn't deal with staying another day.
Also.. I am so very glad and happy for you that he is helping you. Isn't he just amazing!

I understand with the staying longer part. I actually wish I could stay until the Urology dept freed up in October since my bladder disease is so bad off of antibiotics so I am in a catch 22 right now.

Anyway, I had a MRI today because my CT scan showed possible abcesses and I have cysts that have formed in the buttock area. I also have more pain down there as the months are going b and really bad pressure. I call it a butt baby is trying to be born or a watermelon is trying to go out of a spot that is sewn up. Other doctors just keep brushing it off. I had my CT scan in July and have been struggling with no answers since. So sort of glad I already had an appointment with him so I could mention this. I thought it would be something a colorectal surgeon would have to take care of but he said Nope, he does this too. If it is not an abcess then he injects the area with lidocane. If you get instant relief that tells him where the pain is coming from and he injects something else (I forgot the correct term/name). Then that kills the nerves I believe. You can get injections every 3 years or something like that if it is what ends up helping. My pain is so off the charts and people keep feeding me meds that try to block it. Tired of doctors just throwing meds at me. I am going to do a pretty long blog post when I get home this weekend after I listen to the session I recorded, yes I recorded it since I knew a lot would be mentioned and I would swear I could remember everything but don't. I plan on leaving Saturday unless I am told I need surgery or something crazy! I was originally leaving Thurs but I guess his pouch clinic is on Friday or that is when I could be fit in. Next time I will not buy a return ticket lol

Your news is so optimistic.
Someone once told me "go to a 'think' tank".
You found it!

Glad you are getting some answers, even if they may lead to something unsavory.

Something to be said about going to the guy who has seen it all and done it all to get straight to the heart of a problem! But sometimes it is not just about experience. Some docs just have this intuitive sense, or logical mind that can take all the input of your signs and symptoms, then deduce a diagnosis. The difference seems to always be the art of listening. So many doctors are so rushed or so focused on reports and data, they forget to listen to the description their patients are giving them. Dr. Shen sounds like a listener.

Of course, this is not the same, but I found similar instances in the nursing field. To me, the difference between the nurses with "natural" nursing talent, and just competent ones, was that the competent ones relied mostly on what the machines and labs told them, but could not seem to gather much information from the actual patient. I would say, "Why are you letting your patient lay around in pain?" They would reply, "He's fine, look at the monitor!" or "He is not complaining." My reply would be, "Yeah, but look at his face!! Look at his posture! Pain written all over it!" The same nurses would complain that their patients were refusing to cooperate with walking, deep breathing, etc. Yeesh....

Jan

Based on what I've heard over and over again on this board, I believe it's a shame that we can't clone Dr. Shen and give one of him to every GI department in the world.

Also, vanessay, I know exactly what you mean by "doctor paranoia." I'm very impressed with my new GI, who was recruited from Belgium to help Mt. Sinai's (Toronto) very busy GI department. Of course, one of my first thoughts after our initial consult was, "he's awesome but lord I hope he doesn't decide to go back home!"

Anyway, I'm very glad to hear you are on the path to getting things sorted out. Wonderful news!

hey vanessa.. maybe we should buy an apartment in Cleveland and timeshare it between the both of us as it sounds like you might be in cleveland as much as I am!

If I knew how I was paying my own rent back home I would be down! I once had a good paying career. Haven't found a full time job. I am moving back up to the north east though to be closer to CC. I believe I need to come back soon so going to actually look at people that might rent out rooms cheaper in the area. 100 bucks a night is ridiculous for a hotel next door to the CC for us poor people :-/

I am so glad I went to see Bo Shen this time last year. He was the first doctor who listened and explained what was going on. I got better. My doctors at home disagreed with his prognosis but he got me better so who am I gonna trust. I respect him because he really listens and will try to help if he can even if it is a different approach than other docs would take.

Oh many people have already said crap to me about taking Lactulose. That it is horrible to digest, etc. I said well i wonder why CC then uses it. Unless you do research there don't bother me with your opinion. They just keep pointing out urls with the same info anyone can research on it.

That's the problem when you are treating with an emerging concept. The folks who have not gotten the memo, just keep reciting the same old stuff that you already tried and failed. It's not so much that they are wrong, but that the new ideas are unproven (so far).

My feeling is, what's wrong with being a guinea pig if you have already tried the "industry standard" and it did not help? As long as it won't make things worse, no harm, no foul. Even if there are side effects, so what? Just stop taking it if you have problems with it.

Of course, it is always nice to be able to go with the standard protocol and it works right away...

Jan

vanessavy (or anyone else) - I just had my surgery with CC and I remember receiving an insert describing a group of people who open up their homes to CC visitors at much cheaper rates than hotels. I think it was like $25.00 a night. I just tried to do a google search but didn't come up with anything. If you are interested, I can go through my hospital paperwork and try and hunt down the information.

We usually only end up paying about $75 for a nice hotel in the downtown area.. near the stadium and rocknroll hall of fame. 5 minute drive or 10 minute shuttle bus to CC from there. CC has a free shuttle and many of the hotels have their own too. Just call around and ask for the CC rate. Be sure to check parking fees if you have a car, some are included, some arent.

vanessavy, could you explain the difference in symptoms between pouchitis and bacterial overgrowth? I've been diagnosed with pouchitis but am wondering if it really is because my symptoms aren't exactly the same as when I had pouchitis before.

Well I was being treated blindly for pouchitis when I never had it so it could be similar. I get a lot of gas, when I eat the gas starts immediately and feels like my whole digestive tract is being scraped to death by it. I get a log of movement in my pouch, sounds louder than anyone's hungry belly. I get a lot of pain, like pins and needles pain in my pouch, my rib cage also hurts more. Pain and gas mainly. If it is really bad my stool turns into a clear liquid.


And yes I would love if you can find out the 25.00 rate. About all I can afford.

Dr. Shen diagnosed me with pouchitis-like symptoms caused by bacterial overgrowth just over a year ago. He said my transit time was too slow based on my small intestine doing too good of a job of removing water (or something like that).

I've been taking lactulose daily (20mg morning and evening) since then. The symptoms were gone within 48 hours and have not been back since (as long as I remember to take it). The side effects include an extra trip or two to the bathroom each day and a need to drink more fluids, but its all MINOR trade-offs to feel this good.

If anyone has any other questions about lactulose I'd be more than happy to answer them. I believe it to be a great remedy.

I'm confused about lactulose: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000654/

It looks like it would have the opposite effect of what we need as j-pouchers? Or does it somehow help flush out the bad bacteria?

I want to contact my GI about it, but would feel more confident if I had a better grasp of why it's recommended before I call my doc.

Thanks for any suggestions/info!

I am going to talk to my pouch specialist about lactulose as he is a disciple of Dr. Shen and believes I may have some bacterial overgrowth issues. I forgot to do so when I spoke to him the other day, but thank you for reviving this thread which reminded me I have to ask him about it.

DJB,

I spoke to Dr. O about lactulose for bacterial overgrowth when I saw him earlier this month. He didn't seem to have an opinion on it one way or another, but I know how astute and open-minded he is, so I wouldn't be surprised if he's looked into it by now.

Thanks Jon. I left him a message and I am sure he will look into it and get back to me. My guess is he will call Dr. Shen up which he does periodically. The message I left for him mentioned that Dr. Shen seems to be recommending it to some of his patients with symptoms of bacterial overgrowth. Dr. O thought bacterial overgrowth may be what is causing the inflammation in my ileum above the pouch where the bowel has narrowed due to thickening.

CTB,

Any update on Dr. O and his position on lactulose? Have you tried it yet? If so, has it helped your symptoms?

I'd love to hear any feedback.

quote:

Any update on Dr. O and his position on lactulose? Have you tried it yet? If so, has it helped your symptoms?

I spoke to Dr. O a few nights ago and he told me he was going to speak to Dr. Shen regarding lactulose. Pending that conversation happening, he did not seem to think it would be indicated in my case.

He has told me to reduce Entocort from 9 mg to 6 mg for 2 months. This based on the fact that I have done extremely well with the Entocort/rotating antibiotic regimen.