lizzie

Gi bleed and cellcept

16 posts in this topic

Hi all, am writing this from hospital, where have been for the last 11 days following a GI bleed. The gastro did endoscopy and found that was due to disquamination of an area in my oesophagus and haematoma. He was really excited and said that he had never seen anything like it, but thought it was sclero related and that the bleeding had been caused by the Cellcept I am taking. Said that he had found one other reported case. Any way after a week of nil orally and IV, I am now on soft diet so things are looking up. Looks like might have to discontinue Cellcept. Anyway rheumatologist coming to discuss tomorrow. Despair of ever getting out of here!

 

Lizzie

Share this post


Link to post
Share on other sites

Hi Lizzie,

 

Oh my goodness, I'm sorry you are in the hospital! It sounds like you have been having quite a time of it.

 

I'm glad they caught the bleed and that you are able to eat, a little, again. I'll be sending good wishes your way, in hopes you'll be healed from this soon!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Oh Lizzie! Poor you, that can't have been any fun whatsoever. Is the silver lining in your cloud an ice cream diet?

 

Let us know what the rheumatologist says, OK?

 

Hope you are home again soon, even if you do have to give up the maid service.

 

Love and warm hugs, lots of 'em.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post


Link to post
Share on other sites

Lizzie

I am so sorry to hear of the GI issues, things haven't been going to well for you recently but lets hope that now you are back eating a little that you will soon get out of there.

I have to say I did wonder what was happening because had not heard from you in chat. Hope to hear from you soon.

 

Take & best wishes

Jensue

Share this post


Link to post
Share on other sites

Oh Lizzie, I have been silently wondering where you've been...so sorry to hear it is in the hospital....but I am glad to hear that things are finally starting to look up for you and you are able to eat a little again. Let us know what the rheumatologist has to say about all this. Get well soon, we missed you!!! :)


Sending good wishes your way!

Share this post


Link to post
Share on other sites

Hi Lizzie ,

 

I am so glad that you were able to get treated quickly. Did you know that you were bleeding before you went in? Sorry....kind of a nosey question! I will keep you in my thoughts for a quick exit out that hospital door.

 

Take care, Everyone.

Margaret

Share this post


Link to post
Share on other sites

Wow Lizzie, this came on quick, didn't it? Please let us all know what you find out tomorrow. I just read up on Cellcept causing internal bleeding. I am so sorry. I hope you can go home soon and can get back to your normal diet.

 

Sorry and feel better.

Clem

Share this post


Link to post
Share on other sites

Hi lizzy,

 

Sorry you have been going through a rough time. Will keep you in my thoughts and wish you a speedier recovery. Oh, 11 days in a hospital sounds terrible. Keep us posted.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

Share this post


Link to post
Share on other sites

Hey Lizzie,

 

Totally sympathise about going crazy in hospital. I love that your gastro doctor was "excited" - don't we just love being unique medical cases?! I find that something about the hospital environment makes it impossible for me to concentrate on reading books, which I would normally be quite happy to spend 11 days doing. The only thing for it is to succumb to the lure of the gossip magazines - Heat, Hello, OK, even Take a Break, why not?!

 

Keep your chin up, what, what. B x


Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

Share this post


Link to post
Share on other sites

Lizzie, I hope you recover fully from this ordeal. Eleven days sure seems like a long time now adays. Usually after 1 or 2 days you are thrown out because of insurance reasons. Even if the person is still quite unstable it seems like they are sent home way to soon. I hope this time passes quickly for you. Get well soon and keep us informed on how you are doing.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Lizzie,

 

I'm new here, but I wanted to offer my support and wish you well. Hope you are feeling better soon!

 

- Stef

Share this post


Link to post
Share on other sites

Dear all, thanks for the good wishes. Finally got out today. Am now really enjoying doing all the mundane household stuff that normally avoid like the plague (this phase won't last long) and being able to make myself a decent cup of tea, even though do have to wait until it is almost cold before drinking it to avoid hurting the oesophagus. Is feeling better each day though.

 

Margaret, I did know I was bleeding, vomited quite an impressive amount of blood so thought I better go to A and E.

 

Princess, I experienced hospital apathy as well. I haven't even managed to read a whole book in a fortnight, just fitfully watched a bit of TV, flicked through a couple of magazines and took frequent naps (it was very difficult to sleep at night as very noisy). Think is also partly due to it being so warm in there, a good side of which was very few Raynaud's attacks. The only thing that kept me sane was colleagues visiting throughout the day (I work at the same hospital) and texting on my mobile.

 

Saw rheumatologist today, says that I have to permanently stop the CellCept, which I am a bit gutted about as think it was finally beginning to have some effect.

 

Lizzie

Share this post


Link to post
Share on other sites

Lizzie....welcome home and get yourself some much needed rest.

 

Take care, Everyone

Margaret

Share this post


Link to post
Share on other sites

Hi Lizzie

 

Glad you are home now...and hopefully, you will get several good nights of sleep in. Sorry to hear the cellcept is the culprit, especially when you feel it was starting to work for you. Don't suppose your rheumatologist had a plan B for you?


Sending good wishes your way!

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