Paging Polly and all. Diagnosis verified.

hoosier1 · Post by **hoosier1** » Fri Apr 01, 2011 4:51 pm

Hello all,

Just got my second opinion from IU med school on my diagnosis.... Lymphocytic Colitis it still is.

So, does anyone else have pelvic floor dysfunction too?

They mentioned trying some Methotrexate on me. Not sure I am going to go this route since my WBC is low. But the diet and asacol just aren't putting me in a place, symptom and pain wise, I want to be. Polly, with me running a WBC of 4 normally, do you see any short term risk with methotrexate, or even a hard dose of prednisone (recall that the entocort was marginally effective).

I am functioning and am doing ok, but I still lack a quality of life that is more comfortable, if that makes sense at all. And I feel toxic quite a bit.

Help.

Rich

natythingycolbery · Post by **natythingycolbery** » Fri Apr 01, 2011 5:31 pm

Hello Rich,

Well it must suck to have been 'reconfirmed' to have LC as it where, as you must have been slightly hopeful that you may not actually have this 'pain in the bum' disease. But on a slight positive side, your last GI did know what they where doing kinda... I think.

However, I do hope that you can now get onto a decent treatment plan to help get a decent quality of life.

Wish I had more words for you, but I am thinking of you.

Katy.
x

Polly · Post by **Polly** » Fri Apr 01, 2011 5:37 pm

Hello there, Rich!

Well, the good news is that it's not anything more complicated than LC. That's bad enough, though. I have a question - do your docs think that the pelvic floor dysfunction impacts the LC? IOW, is your case of LC worse maybe because of the dysfunction?

I didn't have any luck at all with asacol, so I'm not surprised by your experience. Methotrexate is an option, but your WBC of 4000 is definitely at the lower end of normal, so I might be a little hesitant to try it at this point if I were you. Of course, you would be closely monitored, but for now, other options might be better. A course of prednisone, tapered fairly rapidly to avoid long term complications and withdrawal issues, might be the way to go. I recall some here who went that route and were pleased with the results. The prednisone kind of shocks the immune system into submission, at least enough that Entocort can then be effective.

What's up in the diet arena? What foods are you currently avoiding? Have you tried to avoid dairy and soy along with gluten? I can't remember if you've had the enterolab tests or not. (I think you did). Refresh my memory, please, if you did and what the results were. I suspect that a major reason for your lesser quality of life and continuing toxicity is your lifestyle. You are on the road so much, which makes it is virtually impossible to eat properly. I would think it would be next to impossible to avoid even just gluten when on the road as much as you. Most of us find that we have to prepare the majority of our food ourselves in order to be absolutely safe. I'll go out on a limb here and say that I don't think eating in GF restaurants is ever truly safe. At least in my experience. Of course, we now have the MRT test for those who continue having problems after eliminating the sensitive foods that enterolab finds. But I don't think this would work for you. Once you get results, you have to spend weeks eating a very restricted diet and adding in only one new food every day or two. It would be impossible to do this process on the road, IMHO.

Also, the stress factor is a biggie. And you definitely have an extremely responsible and stressful job.

Just my 2 cents worth. A roundabout way of saying that I would probably choose the pred/Entocort route if I were you.

And maximize any possible opportunity for some R and R.

Love,

Polly

Joefnh · Post by **Joefnh** » Fri Apr 01, 2011 5:51 pm

Rich well I guess I'm glad for you to have a definitive diagnosis, but am sorry it is LC. As Polly mentioned a WBC of 4k is at the low end of normal (standard WBC range is 4k - 10k). Mine before the Imuran was about 9.5k and it took a dose strong enough to bring it to about 4.2k where it is now to achieve any substantial relief and that's with a fairly strict GF/SF and mostly DF diet. As Imuran and Methotrexate are in the same medication class called purine synthesis inhibitors, I would wonder how low your GI doc wants your white blood cell count.

Is that WBC of 4k a steady level or a 1 time measurement? It could be if that if it were a 1 time level that some other factor was influencing it. The WBC counts can bounce around a bit with things as simple as your hydration level or the activity of fighting off a virus.

Keep in mind that if you do start MTX that you will need weekly blood testing to monitor your CBC and liver enzymes. After a month or so the testing depending on your stability the testing frequency is moved to a monthly event.

Thanks for the update Rich

--Joe

hoosier1 · Post by **hoosier1** » Fri Apr 01, 2011 6:21 pm

Naty (Katy), Polly, Joe:

Good to hear from all of you. Once again, I face the job vs. Health dilemma...

None of my docs have connected the pelvic floor dysfunction with the LC. I have made the connection. My theory is that since I was diagnosed virtually 5 years after onset, that my body started to change around the disease. For example, when one has the urge to go so often, after a while, you can tend to ignore the impulse. I think for me, that probably caused the tension in my pelvic floor. Also, when this was tagged as merely IBS, I had quite a bit of antispasmodic medication which I feel could have altered my motility somewhat.

I guess I agree with the prednisone shock therapy first. Even though I tried 4 months of entocort, I am willing to try something more aggressive merely to
see if get some kind of discernible response.

My WBC is usually in 4's and I have no idea why. I don't want to reduce it, but if immunosuppresion gets me some relief to kick start the process, then I am game. I am going to take this post to my local doctor and to my doctor at iu med school to discuss these details.

The r and r would be great, but I sense I would take an indefinite r and r if I had the option. I am working harder to moderate my schedule, honestly. Just don't know if I will be able to move the bar far enough.

Thanks my friends!

Rich

TooManyHats · Post by **TooManyHats** » Fri Apr 01, 2011 7:20 pm

Rich,

I had a terrible time on Asacol, but Pentasa really did it for me. If Prednisone could shock your system for just a bit, perhaps the Pentasa could have a chance to help?

I'm sorry to hear of the confirmation of the diagnosis, but at least you are now satisfied that you have a definite answer.

Pat · Post by **Pat** » Fri Apr 01, 2011 9:18 pm

Joe,

I am not a doctor or a dietician but I don't think I would completely rule out the MRT testing. It might show some things that you are eating that you shouldn't and some things that maybe you could eat. Maybe you couldn't do the whole process of elimination and fix meals yourself on the road but it just might enlighten you to something that would help. Just a thought. Maybe Mary Beth will chime in here.

Pat

hoosier1 · Post by **hoosier1** » Sat Apr 02, 2011 5:49 am

Hi Pat,

I haven't ruled out MRT. Thanks for the note too!

I simply haven't really explored that option yet. Seems I have been so tied up just dealing with conventional doctors, life, etc., that I haven't been able to find the time to do so. But I will...

Regards,

Rich