• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
sherrytrifle

Colonoscopy Done.

4 posts in this topic

Hi everyone

 

As you know I have diffuse scleroderma with polymyositis since 2005. I finally had my colonoscopy at Addenbrookes yesterday. I was told the camera (sigmascope) would be travelling all the way up to the hip. I gulped silently. My consultant told me I wouldn't need an anaesthetic as it would only take 10 minutes.

 

I was taken to the recovery ward and was prepared for the enema. The first attempt didn't work. The doctor came and said they weren't going to go up very high; there was something in particular he needed to see so it didn't matter. Relieved. Wondered what I'd set myself up for by refusing anaesthetics.

 

It did take 5 minutes, some moments were very uncomfortable verging on pain, but it was over very quickly. Verdict was there was nothing nasty up there and everything was satisfactory. I next see the gastro doctor in the Autumn.

 

More good news, I also have just seen my rheumatologist There was a gasp of surprise because of my vast weight gain. She was beaming as she looked at me, The last time she saw me I was 7 stone 5 in winter 2010. I am now 9 stone 4, with a good appetite. The rheumatologist made a point of saying that I have gained a good and honest weight because I no longer need prednisolone to do it. We gradually reduced the prednisolone over the years. Another Rheumatologist had seen my condition and it was claimed that my condition has improved and my body is trying to get better.

 

There is a gradual incline up in improvement in my lung function tests (one of which I have next month). My skin test is mostly graded as now normal, compared to how thick and shiny it was in the beginning and also a surprising improvement in heart output. I can't remember the factual terms used, but I was told most sufferers output performs from 50 – 55 and then plateaus, my test reveals it's trying to head for 60 (what these numbers represent I don't know). But 60 was classed as normal. I was really pleased and surprised. Whether it reaches it or not we'll see.

 

Although scleroderma affects us all differently I hope this gives some of you some hope. I am on mycophenalate, I had 6 pulses of cyclophosphamide and 40mg of prednisolone in the early days. My swallowing is now normal, I'm not particularly breathless, and I am on anti-biotics all the time now for bowel involvement. However, I still have poor mobility.

 

Will keep you posted more regularly. Sherrytrifle

Share this post


Link to post
Share on other sites

Hi Sherrytrifle,

 

What a good result!! :emoticons-line-dance:

 

Thanks so much for updating us; I'm very pleased to hear that you're progressing so well! :emoticon-congratulations:

 

I think this bizarre disease does sometimes settle down after a while; although I have Limited Sclero and not diffuse like you, I too seem to have stablised with only the occasional blip. ;)

 

I've included a link for you on Heart rates which I hope you'll find interesting and it may help to explain the heart output figures to you.

 

Long may your Sclero remain quiescent! :emoticons-yes:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hello Sherrytrifle

 

Well that's wonderful news! It must be wonderful to feel and look better! :emoticon-congratulations:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Sherrytrifle,

 

I am SO THRILLED for you. I ALWAYS love reading Happy News :happy-day: !

 

(However, I hope the antibiotics are beneficial to you and here's hoping that your lack of mobility doesn't hold you back TOO very much).

 

:emoticons-thankyou: for sharing your report with us

 

May you have a good weekend and feel the best you are able.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now