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My Insides are on Fire!

shona colitisIntroduction:

I was officially diagnosed as having UC 3 weeks ago but been suffering for last 2 years. I was also diagnosed for Coeliac Disease 7 years ago and have been on a gluten free diet since then. I am 39 years and married to a very supporting and helpful husband. We have 2 girls who are very helpful even though they don’t really know what exactly is wrong with Mummy. Up until mid last year I used to go to gym 5 times a week. Love dancing, travelling, reading books, baking and making children’s novelty cakes.

Colitis Symptoms:

Pain in stomach, mostly left side. Bloody stools,arms and legs aching. Swollen neck glands and also burning feeling in the stomach for last couple of days.

For last two years I’ve been been eliminating foods that made me get hives, rashes or itchy.

I came down to the conclusion that it was Chillies (pepper, paprika etc), Potatoes and Tomatoes (Nightshade family) that was what was causing these symptoms. I was referred to a skin specialist who told me to continue taking taking antihistamines and also prescribed me some antacids saying that my stomach was producing too much acid. Occasionally I would have bloody stools and I noticed that this would happen if I ate spicy food. I also started coughing a lot and this lasted for 3 months. In Jan 2011, the doctors I was seeing had left so I saw another doctor at another medical practice and mentioned the cough and bloody stools and that I was often constipated. The doctor said I could have Piles. She checked and said no there wasn’t any signs for Piles and prescribed me some steroids for the cough. The cough disappeared and I continued taking antihistamines for the hives, rashes and itches and spicy food . Mid last year my father passed away very suddenly. I was in such a bad state and a month later I started having tummy pains.

I had a pelvic ultrasound scan and was told I had cysts in my ovaries and was prescribed strong painkillers. 2 weeks before Christmas I got admitted in hospital as I started having tummy pains and was given morphine. After another scan, I was told there weren’t any cysts so it must have ruptured and I was sent home. The rashes and itches became worse I had more blood in my stools and the pain was so bad that I would cry every time I had to go to toilet. I decided it wasn’t worth eating these foods that made me itch. Now I’d already been diagnosed as having Coeliac Disease 7 years ago and have been on a gluten free diet since then. A lot of gluten free products has potato starch so it became more difficult in food choices.

After Christmas last year I started having bloody diarrhea every day 7 or 8 BM. I was no longer constipated but the amount of blood I lost was making me tired and weak. I went back to the doctors and he said I might have Diverticular Disease. He prescribed me antibiotics and Prednisalone and referred me to a GI specialist. A week later I had a colonoscopy. When I woke up, the GI told me that I had Ulcerative Colitis and prescribed Salfasalazine and to see him the following week. I went back to work the next day and felt awful. The pain increased by the end of the day and I called my GI.  He told me to take painkillers and if it got worse then to come in to ER and he will meet me there. I took Endone and the pain eased but the Endone was making me nauseous. Next day I went to my doctor and was given Tramal (slow release painkillers) and Enemas. 3 days later my pain increased and I got admitted in hospital and given morphine for pain.

After blood test and xrays, I was told I had constipation and that’s what was causing pain. Was given laxatives until I started having diarrhea (no blood). Was sent home after 3 days. Couple days later I was still in pain and went back to my doctor. I now had fever and the glands in my neck swelled up, my arms and legs ached so much that I had trouble getting out of bed (I am told this is arthritis from UC). Another trip to my doctor who said I had some infection and so another dose of antibiotics. A week later I am still on antibiotics and still in pain. 2 days ago I started taking probiotics and multivitamins. My neck glands are still swollen and painful and today I had blood and mucus. I am seeing GI specialist tomorrow so lets see whats the next step. I have now been off work for over 3 weeks :(
Oh and I have also found out since that two of my cousins also suffer from this disease so looks like it is in my family. As for the rest of my family and friends, what I find most disturbing is that those who don’t get sick don’t understand how bad this disease is. You surely find out who your true family and friends are. I am lucky to have such a supporting husband, I don’t know what I’d do without him.
Right now my stomach seems to be on fire and I can’t sleep, hence I’m surfing the net looking for solutions.

Where I’d Like to Be in 1 Year:

I’d love to be able to manage this horrible disease and get on with my life with my family. I want to be able to do the things like I used to and not take so much time off work as I don’t have any sick leave left so don’t get paid if I don’t work.
Colitis Medications:
I don’t know if the medications are working or not. The only thing that seems to work is the pain killers which I can increase as required. The pain doesn’t go away all together but is at least bearable. The hot packs seem more for comfort then to relieve pain. Any suggestions?
written by Shona
submitted in the Colitis Venting Area