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Denise: Systemic Sclerosis and CREST

I was told to take painkillers when needed and maybe come back when I was fifty and something might show up then.

Flower for Denise by Shelley Ensz It all started when I was sixteen years old. I was having awful pains in my hands and feet. The doctor said it was rheumatism. This went on for years. It got worse and I had other symptoms like white, then purple, then red hands; it was the same with my feet. My legs hurt, and I was having trouble with my thyroid.

I was sent to a specialist who ran some tests that came back negative. I was told to take painkillers when needed and maybe come back when I was fifty and something might show up then. I was really upset and could not believe the attitude of this so-called doctor. I went home in tears. I was twenty-eight by then, and I really could not take anymore. I was tired all the time, I hurt all over, my hands and feet were going a bit out of shape, and the pain was unbearable.

I went to see another doctor who told me I was just depressed and gave me antidepressants. Although the pills made me relax a little, it still did not explain my symptoms. At last I saw a new general practitioner (GP) who actually listened to me, did every test possible, and then sent me to see Professor Cooper. What a relief! Dr. Cooper took great interest and, as a result, diagnosed me with Raynaud's phenomenon and CREST.

As it is a hard disease to understand, I felt that at least someone was listening to the pain I had suffered for years. I felt no one believed me, as if I was making it all up. Five years ago, I became really sick, lost weight, and could not eat. After being admitted to the hospital, it showed my liver had been affected. This showed I had systemic sclerosis. I spent seven weeks in the hospital.

Three months later, swallowing became difficult, and my large bowel became affected. I spent another five weeks in the hospital, but at least I was being looked after. I am now on fifteen different medications. I do not really know what or how I would do without the medication or without my GP, Dr. Cooper, and his associate, Karen.

I am forty-five now, and although I suffered for years, I have come to terms with the disease and accepted it, which is hard to do. Unfortunately, I must have an ileostomy as my large bowel refuses to work, but I am positive I will cope.

I have a supportive husband and siblings, and my elderly parents are very caring. I have two boys, ages thirty and twenty-five, who unfortunately will not accept what I have, but we are working on it. I have three lovely granddaughters, and they help me along and give me a reason to get up in the morning.

I have good days and bad days. I have not worked in four years and I do miss this. I was an auxiliary nurse for sixteen years. I used to look after others, and now they have to look after me. I found the isolation very hard to cope with, but our true friends will always be there. I now have an email friend, who I contacted through this web site, and that is great.

~ Update 9-23-03 ~

I have a lot to tell you since my last story, which was published in Voices of Scleroderma Volume 1. Recently I had to go into the hospital to have an ileostomy done, as the scleroderma had gone into my colon and stopped it from working.

The surgeon I was seeing had gone on maternity leave so I was sent to another surgeon. I was very concerned when he spoke to me as he was going to do the operation by 'keyhole' surgery. He assured me that if he had any difficulties he would then open me up. Although I was very worried, I allowed the operation to take place and I did feel okay afterwards.

The doctor came to see me and said that he had some difficulty as there was lots of fibrous tissue which he had to cut but thought everything would be okay.

After a few days I went home and on the first day home I felt fine, but by the third day I was vomiting and the stoma was only working in squirts. I called my general practitioner and he gave me medication but by early hours of the morning I was rushed back into the hospital. I had test after test and they could not see what the trouble was with ordinary x-rays but never attempted to do a body scan or anything. By now ten days had gone by and I had deteriorated badly. Finally they decided to take me to the theatre and boy did they have a shock. I had a blood clot behind the stomach wall and was hemorrhaging internally and the colon was twisted and festering. They did their best to put things right but had to stop operating to replace the blood I had lost. They could not get the colon back in.

I was sent to intensive care (which I do not remember) and gave me a blood transfusion. One of my lungs collapsed. The next day I went back to theatre by another surgeon who managed to put things right. After this I was asleep for six days in the intensive care unit, and they were worried I would not wake up. Of course, I did wake up and then I spent another month in the hospital recovering.

What had happened was they had treated the constipation but not the cause of it, and they had also cut away fibrosis tissue which had wrapped around some blood vessels and that is why I hemorrhaged. The colon was so dilated and had festered.

Although I had wonderful nursing care I feel we have to be careful who operates on us as without the knowledge some surgeons really do not know what they are doing. It has taken me over a year to recover properly and I will not go back to that hospital for any more surgery as I have become very frightened. This to me is a great example of just how few doctors have any knowledge of scleroderma and its possible complications.

I now have to go have my gallbladder removed, but I am going to another hospital and surgeon who listens to me and understands my condition and does not do keyhole surgery.

However I still have a great general practioner, a good family to support me, and a few good friends. I now have dry mouth and eyes which I have to take more tablets for. I am sure that if you shook me up I would rattle. I still have good and bad days but even after everything I have been through I am still very positive and cope well.

I felt that I should write about this to let other people know. Just remember it is your body and your life and you have a right to protect it. I am now forty seven years old and have gone through quite a lot lately and I am still standing and hope to continue to do so.

My thanks to everyone that was there for me and to all scleroderma people- take care, keep warm, be positive.

To Contact the Author

New email address needed 09-26-06 SLE
Old Email Prefix: abfab56
Story posted 11-18-01
Story edited VH1: JTD 8-9-03
Story updated 9-23-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Bowel Involvement
Difficulty Swallowing (Dysphagia)
Liver Involvement
Systemic Sclerosis
Thyroid Disease
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Denise E: Diffuse Scleroderma

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