Help with talking to G.I.

I agree with your assumption that is is becoming a Crohn's diagnosis, even if it is pouchitis too, as the CT evidence of bowel wall thickening leans that way. I would suspect that the pouchitis is a Crohn's manifestation too.

Ideally, the best case scenario is to achieve and sustain remission with something, simple, cheap, and with few side effects.

Pentasa fills that bill, but only if it is effective. Long term antibiotics would be a second choice, again if effective and you did not have side effects. I can't remember why you were coming off them.

Entocort is a good option, but not as good as no steroids at all. Of course, with Crohn's you need to be more open to the options available to you, and I am not sure that Entocort is better even than the biologics in regard to long term side effects risk.

Next is usually methotrexate, but has similar potential side effects as biologics. It is cheap though, and can be given orally.

Biologics are usually end of the line stuff, mostly because of cost and unknown future risks, and I think you are justified in wanting to reserve them for later, if possible. On the other hand, more and more, they are looking at them more as a first line treatment for a select population.

So, here is how I would approach it if it were me. I would just come right out and say I had reservations about going with biologics without trying and failing the other options first. Then I would ask if he was willing to prescribe them first, and if not, what were the reasons. Any good doctor should be able to explain his reasoning, and he may very well have a convincing argument. If you get good clinical results with antibiotics that is good, but he may want better endoscopic and CT results, for better long term remission (it is not just all about your symptoms). Basically, ask him to convince you of his preferences. He may actually be right.

Jan

Hi I am having similar problems to yours am now on prednesone 20 mg total per day asked my GI about entocort he said he believed that the entocort because it is not systemic would not be in contact with the inflamed area long enough to be of any benefit this is in my cause which may or not may be crohn's but is inflamation in various areas of the pouch with stricture at he inlet and inside the anus. I also take saluflak supp.and have for about 20 years. don't know that it is of any benifit at this point but have become a habit i guess. I agree with Jan your Dr. should be able to give his best argument to convince you of his course of action you don't have to agree at that point just tell him you would like to think it over and do some research. This is hard to do I know as to get into see one of these guys is a feat in it's self. It will be a year and one surg. later and I am still not sure what the problem is?

Hi Subsky,

My diagnosis of CD was given in january after 8 years of UC, five of them being with the j pouch and chronic pouchitis.

I had tried the Entocort for the pouchitis and it did really help. I did the suppositories, antibiotics and steriods for the UC and the pouchitis, so when it became clear that I had CD, I just wanted to get it under control.

I started Humira in April, and I regret not doing it earlier. It is the one thing that finally shut down all these flares-UC, pouchitis or CD.

Obviously, this is my experience, but I was done with things only working half heartedly. I know you have changed your lifestyle and are doing things in a much healthier manner and I am really thrilled for you. The Humira for me has been the "cleanest" option, without having to worry about the steriods and chronic antibiotic dependance. But this is my choice, and my CD was not just inflammation, but multiple fistulas, joint pain, etc. I was ready to just try a big gun and be done.

It is working great for me. If you do choose to go this route, feel free to PM me. For me, the decisions was not to waste any more time with more medication that didn't lay the big smack down on my IBD. But that is just my choice.

Take care,
~Tammy

Thanks for all the responses Jan, shawne, and tammy!

I've read all your suggestions, and have thought about it a little bit more and have come up with my new game plan.

Right now the pouchitis symptoms are about the same as they were yesterday. I had to wake up and go three times in the night, but I guess that's better than not waking up and leaking, lol. When I was on the antibiotic's I wouldn't get up once, and my pouch felt like a million bucks, aka I couldn't feel it at all. Pouch still aches when it's full. Once empty it doesn't hurt, like right now.

I see my GP on thursday. I just phoned the clinic and they have the results from my stomach/upper bowel scope, along with the biopsy results. I asked her to print them off for me to pick up but "the doctor hasn't looked at them yet" so she won't do it, so I gotta wait until thursday to know whether or not any of the biopsies came back as Crohn's, lame.

I'm pretty sure I fall into the boat of initial diagnosis of UC since all inflammation was in the large bowel, then 6 years later I'm having inflammation and bowel wall thickening in my j-pouch, bowel right above the j-pouch and right bowel, inherent to Crohn's. I've only had one fistula, thank god/knock on wood, and it was successfully dealt with by a fistulotomy through the sphincter muscle. He also said the inflammation never looked bad, with my stomach looking great and my upper bowel having a few patches of mild inflammation. I wouldn't be surprised if the biopsies come back negative again for Crohn's, as I'm starting to believe I'm in one of the sub-categories of the disease, along with now rocking a j-pouch with Crohn's. I'm just lucky I have the j-pouch now, since if I had the Crohn's diagnosis 6 years ago the pouch wouldn't have been an option for me, so I better make good use of this one.

When I go see my GP on thursday I'm first going to ask about my biopsy results. Then ask for another course of cipro/flagyl to chill the pouchitis out. Tell him to contact my GI down island and tell him I've been having pouchitis symptoms and would like to see him asap to discuss treatment for my Crohn's. Also ask for a blood test with my GI's name on it as well, so when I do go down to see him he'll have a full profile on my blood.

Then when I see my GI we'll probably talk about biologics, and I think Humira would be a great start for those. I have awesome medical insurance from work, they pay 100% of drug costs, so that's not an issue. So I'd be rocking the cipro/flagyl as I'm continuing to taper of the prednisone, and start taking humira injections as a remission maintenance shot what looks to be every two weeks if it's mild and some people need one every week to stay in remission? Can't wait to see my doctor's amd get the ball rolling!

Sounds like a good plan.

Just one thing to remember, though. There is no such thing as a biopsy that is negative for Crohn's. What I mean by that is that while there may be markers that mean a positive diagnosis for Crohn's, mostly granulomas, since the other things, like transmural inflammation can occur in UC. So, biopsies cannot actually rule out Crohn's. Granulomas are found in less than half of those with Crohn's, so the diagnosis is usually more of a preponderance of the evidence.

I am thinking that Humira would be a good choice for you, unless antibiotics really keep you in remission. The one and only thing about Humira I did not like was that the shots sting, sometimes a LOT! For that reason, I did not want the pen with the automatic delivery, but the standard prefilled syringe. That way, I could control how fast the drug was injected, and pause a bit when it began to sting. Icing the injection area did not help much, but letting the syringe sit at room temperature for about an hour helped some. Simponi does not sting at all, and I love it for that!! But, it's not approved for Crohn's, at least not yet.

Good luck!

Jan

Since this morning I emptied my pouch for the first time today just now, it was fully formed, and it's 8pm. Have had ZERO pouch pain today, even went for 4 laps around the track, and played tennis for the last hour. So as of now fingers crossed it stays away! I just got back from a trip on a plane to visit my sister and mom, that trip alone with stress could have been causing my issues. Hopefully it wasn't even pouchitis! We will see. Yeah I'm ok with the shot hurting, I have a crazy high pain tolerance. I like the idea of being able to do it myself and not have to go somewhere and be "infused" for a while. Cause as of now no one is trained for the infusions so I would have to drive 2 hours away for them. So stoked to get on Humira and see if it works!

Alright guys I have an update!

I saw my GP today and received the results of my gastroscopy. Everything looked good, and both the biopsy for the stomach and upper duodenum came back normal. Got a lab form for a complete blood work up, and have an appointment to see my GI august 2nd. By then I'll almost be done tapering off of prednisone, and we'll talk about biologic treatment options.

As of now I feel great, no pain/urgency from my pouch, so now all I can do is be healthy and wait till august and hopefully everything stays settled until then!