Been having a rough time.

[MBombardier]

[ant]

Dear Pat,

Sorry you are in a prolonged watery D flare. Hope you come out of it soon and the new GI can help.

Best wishes, ant

[sarkin]

Oh, Pat, you make your own laundry detergent. Some day, I want to know about that, but only when you're feeling much, much better.

I sympathize with the dilemma - you need nutrition (and symptom relief), but must cut out potential problems/risks. When I was at my lowest, I went "no risk" all the way - I would have done anything to stop the D. HOWEVER as you point out, that's partly because I like to sleep.

Wish I could drive you to your GI appointment. Fingers crossed from here,

S

[Kari]

Dear Pat,

I'm so sorry you're suffering - it is so very discouraging when the brown water keeps coming :(. It seems that when we enter a flare, it takes on a life of its own, and despite our best efforts, it is determined to run its course on its own agenda. I have been where you are several times during these 10+ months since I started down the 'healing with diet road'. My last prolonged flare started a few weeks into the LEAP program and lasted close to a month and a half. However, the good thing was that the BM frequency was still down, which is what kept me motivated.

Keep the faith that you WILL get better, and know that we are all here rooting for you!!!



Love and more hugs,
Kari

[starfire]

I believe your apt with the Dr is today. I surely hope it will be helpful to you in some way.

Love, Shirley

[Pat]

Sara,

http://tipnut.com/10-homemade-laundry-s ... t-recipes/

I use recipe #2. I do not use 1 cup final mixture in my machine because I have a water sofener and it is a front loader. I use about a 1/4 c. I make mine in a five gallon bucket then fill containers 1/2 full with mixture and then fill the rest with water to make 10 gallons. I use Dr. Bronners (sp?) baby soap. It is unscented and very mild. So cheap and works beautifully. I even put some in my spray and wash container to put on spots. Works!

Shirley,

Yes, my appt is today. I can't wait. Thanks for thinking of me.

Pat

[sarkin]

Pat,

Thanks for the 'recipe' - and fingers crossed your appointment provides some insight and a solution to the D.

--Sara

[Pat]

I had my appt today. This dr thinks there has to be something else going on because in his experience he has not had much trouble helping people with MC. He said it is fairly common and that he has not had even 1 person that he could not help. We'll see. He is fishing for starters. He caught me in a weak moment and I agreed to take Xifaximin and Bentyl. He said I may have to take it for a month. He asked if I had ever had a Cat scan of my pancreas or gallbladder, No. So I guess that will be coming, maybe. He wants to do some blood tests, repeats, for celiac and what he called an IBD panel. He is also having a specialized pathologist look at my biopsies from 2000 and 2006. She is a pathologist that specializes in GI problems. He is concerned that maybe the collagen bands are getting thicker and that is not good. I never got out of him what that would mean. He told me to eat whatever I wanted except what I knew was a problem, well that's just about everything. He has not ruled out celiac even though I have had tests that show that I don't have it. He has never heard of Enterolab. He was concerned that I am so thin. Well, that's about it. I go back in 2 weeks. We are going out of town for a few days and I am going to take the medicine and try to not think about all this. Thanks for your support ya'll, I don't know what I would have done without this family.

Pat

[sarkin]

Pat, with my whole heart, I hope the medicine helps. Enjoy your out of town trip.

Love (and fingers crossed you're heading for relief),
Sara

[mbeezie]

Pat,

Celiac testing??? Waste of time as you havent been eating gluten. But at least he is open to looking in other directions. Hopefully he has a curious mind and will keep searching.

Let us know if the medicine has any impact. Be sure to check on www.rxlist.com for any potential reactive ingredients. Maybe Tex can weigh in on the meds.

HUgs,

Mary Beth

[tex]

Mary Beth,

To be honest, I'm kind of sad, as I read about this "ambitious new doctor", and his plans. I can't help but get a feeling of déjà vu. I wish her the very best, also, but I'm very concerned about the prospects. I find it somewhat incredible that Pat is unwilling to try something as simple as stopping her HRT treatment program for a month, (which would cost nothing, and which has been shown to be the key to remission, for at least several other members here), to see if that might make a difference in her symptoms, but she is willing to try a full month of an expensive antibiotic treatment program that has been tried by at least a couple of other members, (with no apparent long-term benefits). What concerns me, is her adverse experience with an antibiotic treatment program a few years ago, (which she herself claims that it took a couple of years to recover from).

Your observation:

Celiac testing??? Waste of time as you havent been eating gluten.

Is right on target, of course, and makes me very suspicious that he may be much better at selling his services, than he is at treating MC patients. This statement, (the portion that I've emphasized in red), is what first raised the flag for me:

This dr thinks there has to be something else going on because in his experience he has not had much trouble helping people with MC.

Did anyone here actually believe that when they read it?

We're family here, so I'm hoping that I'm wrong, and this doctor turns out to actually be able to live up to such ambitious claims, but I'm very apprehensive. I sincerely hope that this is not going to be a repeat of what has happened in the past.


Please take care of yourself, Pat, and don't allow him to persuade you to do things that go against your better judgment, or things that you know in your heart, (from experience), may not be appropriate for you. Remember that you probably have much more experience with this disease, than he has, despite his lofty claims.

Tex

[dolson]

I have broken two bones on left wrist. Just had surgery and I'm in severe pain. What can I take for extreme pain? I can't do a darn thing. I'm HURTING BIG TIME. Can you help me? Everything has acetaminophen and it hurts my gut. Dorothy

[tex]

Sorry to Hear about the Broken Bones. Unfortunately, we have very few choices. As far as I'm aware, the only alternatives for acetaminophen are tramadol, or some other stronger opiate. Maybe someone else will have a better suggestion.

Tex