Good News and Sad News!

fatbuster205 · Post by **fatbuster205** » Mon Dec 17, 2012 1:26 pm

I saw my GP this morning (he is now the proud owner of Tex's book

) and we had a great discussion. He hadn't heard the results of the biopsies at that point but he reviewed my charts that I have been keeping and is 100% behind me "being pro-active in treating [my] illness!" - his words!

He is very happy that I have gone GF and in fact spotted one day where I had 7 BMs and asked what that was about - Dream Topping being the answer!

When I got home from work I had a very nice letter from my Consultant (and I suspect my GP also now has one!) confirming that my biopsies were "reassuringly normal" and he will review me in clinic in a few months. My only issue is he said nothing in the letter regarding reducing my dosage of budesonide - I might ring the hospital tomorrow for advice.

Today has been a tough day though, not because of the above, which I see as good news, but because a work colleague died at the weekend and as you can imagine it has been a pretty difficult and frankly crap day! We are all reeling and trying to come to terms with it - he was only 47 and has left twins aged 14! He (Maurice) had a heart condition and has been ill for about 4 years but has coped. However, he developed pneumonia and was admitted to hospital 3 weeks ago. He deteriorated and was put into a medically induced coma and dialysis but rallied and on Friday was moved out of intensive care into coronary care! We were planning a rota to visit in hospital over Christmas but he died on the ward on Saturday night!

Apologies for sharing this but it puts things into sharp perspective! Like my blood pressure, which when the nurses monitor, it is around 150s over 80-90s, which is high but today with my jolly Doctor it was 180/100!! Obviously, news of Maurice's death and a headcold probably don't help but I guess I will be adding blood pressure meds into the equation by early next year!

But as it is my avowed intention to reach 110 years with all my facilities intact I will take the meds!

Live today... it could be your last!
Anne

Post by **tex** » Mon Dec 17, 2012 2:31 pm

Hi Anne,

I'm very sorry to hear of your colleague's untimely death. You're right, something such as that not only upends our day, but our week as well, and probably beyond that. And it takes it's toll on our own health, by ratcheting up our blood pressure, and it probably affects the production of enzymes and inflammatory modulators that we are not even aware of.

I never cease to be amazed at how open your doctors seem to be to your suggestions. I can't decide whether you are a born teacher, or a super salesperson.

Whatever it is, good for you.

Tex

Martha · Post by **Martha** » Mon Dec 17, 2012 2:41 pm

Dear Anne,

I'm so sorry for your loss. I will pray for Maurice's children and other family, as they deal with losing a loved one.

Martha

tlras · Post by **tlras** » Mon Dec 17, 2012 3:57 pm

Hi Anne,

Sorry to hear about your co-worker. Way to young to pass on. Prayers to his family.

But happy to hear your biopsies were normal....I believe they were checking you for Celiac right? And hold off on anymore Dream topping...lol! I had a huge sugar cookie with icing on it (GF/DF) over the weekend and had no problems whatsoever. And that's without meds! I probably will wait awhile before I do that again but it was a holiday get-together and gosh darn it, I wanted something sweet.

Take care,
Terri

Leah · Post by **Leah** » Mon Dec 17, 2012 6:21 pm

Sorry to hear about your co-worker. That would be very upsetting to anyone I would think.
How long have you been taking Budesonide? Are your symptoms under control? It takes a while to taper down and it seems that being on it less than 4 months has a higher rating of relapse. However, if you are kind of feeling constipated, then you definitely should start tapering to a lower dose.

Leah

Gloria · Post by **Gloria** » Mon Dec 17, 2012 8:10 pm

Hi Anne,

I'm so sorry to hear about your friend and his family. It's never easy to lose a good friend, especially unexpectedly.

It sounds like you had a great visit with your Dr. My feeling is that you're the best judge in determining when and how much to taper the budesonide. Doctors follow a general timetable, but you know your symptoms best and should be able to increase or decrease it as necessary. In addition, doctors usually want you to reduce your dosage more quickly than most of us here would recommend.

Gloria

MaggieRedwings · Post by **MaggieRedwings** » Tue Dec 18, 2012 6:10 am

So sorry to hear about Maurice and sad to hear that 2 young children are without their father. Will offer prayers for him and his family.

Love, Maggie

fatbuster205 · Post by **fatbuster205** » Tue Dec 18, 2012 8:02 am

Leah wrote:How long have you been taking Budesonide? Are your symptoms under control? It takes a while to taper down and it seems that being on it less than 4 months has a higher rating of relapse. However, if you are kind of feeling constipated, then you definitely should start tapering to a lower dose.

Hi Leah,
Since end of July and I am on 9mg. I am generally having 2 Normans a day and no sign of constipation!
Anne

fatbuster205 · Post by **fatbuster205** » Tue Dec 18, 2012 2:55 pm

tex wrote: I can't decide whether you are a born teacher, or a super salesperson. Whatever it is, good for you.

Hi Tex,
Thanks for your kind words! Maurice's brothers came into the office today - they wanted to see where he worked, meet his colleagues etc and it was really nice because we were able to tell them stories, have a laugh, etc. I hope to go see Maurice tomorrow at the wake and say good bye! Funeral is Thursday!

I am a teacher, or at least I was! I taught Geography for 16 years (Otis Ferry (Brian Ferry's son), Micky Summers (Sting's daughter) and Kate & Pippa Middleton (I suspect that doesn't need explanation!!) are former pupils of mine, I am privileged to say!).

I also worked as a Holiday Rep for Thomson Holidays many years ago and now I work in Corporate Communications!! I guess your guess was pretty accurate! Let's just say I can be gently persuasive (I am not a "Hard Sell" type)!!!

And thank you to everyone for your support over the bereavement of losing a friend and colleague! Each day gets a little easier but the next couple of days will be exhausting! I guess we have all been there right? But we have great memories of Maurice and meeting his brothers today was special. Here in Ireland, death is met full on! We don't shy away from it and funerals are quite fun once the "business end" is dealt with. That might sound flippant but it truly isn't - in fact it is really comforting and healing! For once avoidance is not the cure!

Love you guys!
Anne

Post by **tex** » Tue Dec 18, 2012 3:41 pm

Anne wrote:I taught Geography for 16 years (Otis Ferry (Brian Ferry's son), Micky Summers (Sting's daughter) and Kate & Pippa Middleton (I suspect that doesn't need explanation!!) are former pupils of mine, I am privileged to say!).

Wow! With credentials such as that, it's no wonder that your doctors pay attention when you come to see them. You're a celebrity.

I'm in awe,
Tex

fatbuster205 · Post by **fatbuster205** » Tue Dec 18, 2012 4:20 pm

LOL!

But they don't know that! I only share that with a few! And to be honest I was just in the right place at the right time! I used to joke with my students how lucky they were to have me!!!:graduate:
Anne
xxx

fatbuster205 · Post by **fatbuster205** » Tue Dec 18, 2012 4:23 pm

Martha wrote:Dear Anne,

I'm so sorry for your loss. I will pray for Maurice's children and other family, as they deal with losing a loved one.

Martha

Thank you so much Martha.
I met his brothers today and we were able to share some good stories! Thursday will be tough but essential! I know from my own experience that once the funeral is over, and the loved one put at peace, the healing process begins! The hardest bit will be meeting his twin children Marc and Marianne! Tissues at the ready!
Anne xx

fatbuster205 · Post by **fatbuster205** » Tue Dec 18, 2012 4:31 pm

Gloria wrote:My feeling is that you're the best judge in determining when and how much to taper the budesonide. Doctors follow a general timetable, but you know your symptoms best and should be able to increase or decrease it as necessary. In addition, doctors usually want you to reduce your dosage more quickly than most of us here would recommend.

Gloria

Hi Gloria,
Thank you for your sympathies - much appreciated.

As to the above, my problem is that my enlightened Doctor is inclined to keep me on 9mg budesonide for a while yet! I am not sure I am happy about that but I will review it in the New Year (given my current fuzzy head with a head cold etc!!) . But it seems my GI is a long termer in terms of using Entocort - he appears to have done his homework and is really up to date!
And it is free for me because here in Northern Ireland I have the benefit of the NHS! As I say, I am not making any decisions this week!

Anne
xx

fatbuster205 · Post by **fatbuster205** » Tue Dec 18, 2012 4:38 pm

tlras wrote:Hi Anne,

I believe they were checking you for Celiac right?

Yep - even though I spell it differently!!!

It is great to know that my biopsies were "reassuringly normal"!! And from that I guess that also means my MC does not extend into my duodenum (and maybe the small intestine??) i.e. this is just a colonic issue. The reason I say that is that it probably means I have fewer food intolerances?? I guess I need to be patient, monitor symptoms vs intake and see if patterns emerge??

But thank you again!
Annexxx

fatbuster205 · Post by **fatbuster205** » Tue Dec 18, 2012 4:39 pm

MaggieRedwings wrote:So sorry to hear about Maurice and sad to hear that 2 young children are without their father. Will offer prayers for him and his family.

Love, Maggie

Thank you Maggie!