I am so lucky with my Doctor!

fatbuster205 · Post by **fatbuster205** » Thu Aug 23, 2012 11:36 am

OK so I had a check up today with my GP - new chap as my GP left - and aside from slightly raised BP and blood sugar (I have to have a fasting test) he is really happy with my progress and response to the steroids. Along with other things I mentioned that it is my intention to try diet to see if I can "heal myself" and I told him about this site, the food intolerance's, the research and Polly's story of having got complete remission. He was very impressed about the latter and supportive of the idea in general. He agreed that there has been a lot of research and the association of non-caeliac gluten intolerance with MC is increasingly being mooted! It is great to know he will support me and I told him that when I see my consultant in 6 weeks times or so I am going to be pushing to go GF - or at the very least do an elimination diet to see what I can eat and not! I know many of you have not had such luck with the medical profession but I do feel truly lucky to have the doctors I have.
As to my progress I am definitely doing a lot better - still pooping a couple of times a day on average but no D or C and no pain. I have been keeping a record of BMs since the beginning of July - just after I was discharged from hospital - using the Bristol Stool Chart and so was able to actually show him what has been happening in terms of frequency and type of BM! He was impressed! He is keeping me on 9mg budesonide until I go back to the hospital, and he has added in alendronic acid to protect my bones! Other than some reactive symptoms initially, I am not suffering with side effects from the steroids and I have managed to keep my weight steady and controlled - that is through sheer will power! I said that I was willing to do what it takes if I can make myself better and be drug free! In the meantime he wants to continue to monitor me every month!
Anyway, it's all good news here in Carrickfergus! Let's hope it continues this way because it has been a long summer!!
Anne

Post by **tex** » Thu Aug 23, 2012 6:14 pm

Anne,

That's great news.

Tex

tlras · Post by **tlras** » Thu Aug 23, 2012 7:14 pm

That's great news! How long did you see results after taking the steroids? My doctor has me on Asacol but it's been a week and it's not working for my D. I'm trying the elimination diet this weekend and see what happens. Sticking to chicken broth, jello and clear liquids tomorrow then trying some chicken and carrots. I was just diagnosed in July.

Sounds like you have a great doctor!

Good luck with the diet.

Terri

Gloria · Post by **Gloria** » Thu Aug 23, 2012 8:27 pm

Terrific news and wonderful visit with the GI. Can you send him to the U.S.?

Gloria

Lesley · Post by **Lesley** » Thu Aug 23, 2012 9:29 pm

Jealous! I would love to have a doctor with a fraction of that understanding!

Polly · Post by **Polly** » Thu Aug 23, 2012 10:38 pm

Wonderful news, Anne!

Best wishes for continued healing.

Love,

Polly

fatbuster205 · Post by **fatbuster205** » Fri Aug 24, 2012 4:59 am

Hi Terri,
I've been on the steroids 6 weeks and I would say it has taken about a month for things to start improving to the point where I am seeing a significant difference in BMs. It helps recording them because it becomes more obvious that there has been an improvement and it is so easy to be inaccurate when you try and remember. I am more or less having normal (Bristol Stool Chart 4 and 5) BMs twice a day now compared to 15 x 6 and 7s previously! I am still on Asacol so it is a lot of tablets every day which is why I am going to address the diet and see if I can improve things to the point that I can reduce the medications. At present I feel if I were to jump up and down I would rattle!
Anne

fatbuster205 · Post by **fatbuster205** » Fri Aug 24, 2012 5:18 am

I should have said BSC 3 and 4 for normal!! Getting confused! LOL!

ant · Post by **ant** » Fri Aug 24, 2012 9:17 am

Dear Annie,

What a great doc.!

Hope you continue to make progress,

best wishes, Ant

P.S. About a year ago one of my Hong Kong docs said I was being obsessive when I showed my BM charts. Even sited it as obsessive behavior that could be linked to D...the old "its in your mind" BS. I have since changed docs

fatbuster205 · Post by **fatbuster205** » Fri Aug 31, 2012 3:01 pm

Quick update!
I am now going only 1-3 times a day!!! Still feeling fatigued and still have some days better than others but seeing a real difference at last.

I am experiencing cramping in my hands and feet intermittently but I guess I can bear it as I know from before that once I get to 6mg dosage, hopefully in another month or so, they will ease! It is just so good to be able to go once and not worry for the rest of the day.

On a slightly different note I have seen an improvement through eliminating alcohol as well as caffeine! I note in Tex's book - I only got it when I got home this evening and I am half way through (about to read Chapter 9!) that most of you can tolerate alcohol? But over the last couple of weeks I have noticed that any more than 2 glasses of wine seem to cause a worsening of symptoms. I have been off alcohol completely for 10 days - I tend to only drink wine and generally white wine although I will drink red as well - and while I can sink more than is probably healthy I do try and be sensible!

But seriously, I would be interested to know if anyone else has noted a link. Giving it up is not an issue and, when I next see my Consultant I will be able to say - look, I have made some small changes and I am seeing an improvement; I am going to make bigger changes re diet!! As Tex points out, I don't want to antagonize my Doctors who have been really good even though they still seem hesitant about radical diet changes. And I will be getting them copies of Tex's book!

Anne

Post by **tex** » Fri Aug 31, 2012 6:26 pm

Hi Anne,

Some of us can't tolerate the sulfites in wine. Not only does wine have sulfites naturally (from the grapes), but for some wines, additional sulfites are added to stop the fermentation process and to serve as a preservative.

Some of us have also discovered that by eliminating foods that are high in histamines, we can help to control our symptoms (by reducing inflammation caused by the degranulation of mast cells). All alcoholic beverages contain histamines, apparently. So while the wine or other alcoholic drinks shouldn't cause any reaction symptoms due to gluten or other food sensitivities, if we are prone to mast cell activation disorder, then alcohol can cause inflammation problems for us.

When you get to chapter 14, you will see a discussion on foods that cause histamine reactions for those of us who are sensitive to them.

Thanks for the update, and I hope you continue to improve.

Tex

fatbuster205 · Post by **fatbuster205** » Thu Oct 04, 2012 12:13 pm

Feeling a little dodgy - viral I think - but still on 9mg budesonide. Unfortunately my blood pressure has gone up (169/99) so I was told to ring the hospital and bring forward my appointment. So Monday I am taking Tex's book with me - a present for my consultant - and will be informing him that I am going GF! Yes! Shock and amazement - she has finally got it!!!! I have started working through my cupboards reading every label and it is so interesting how many foods contain gluten!! A friend is getting the benefit of my clear out - she has 4 kids!! I just do not want to have to take yet more medication to counteract the effects of the medication!! Symptomatically I have still 2-4 BMs per day on average but they are all over the place - not as consistent as before (BSC 2-6 currently!) which suggests to me after 3 months on high dose steroids that diet has to be involved! Watch this space!
Anne

Post by **tex** » Thu Oct 04, 2012 2:50 pm

Anne,

Good luck with the appointment. I hope it goes well.

And I hope the diet brings fast relief, also, so that you don't have to wonder if it's helping. It takes some of us a long time to see improvement.

Tex