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

6 thoughts on “My Insides are on Fire!”

  1. I was told it was cysts years ago. I also have an arsenal of pain killers for the constipation. Doc gave me Hyomax to ease cramping in my colon. Most of the time it helps. Having this is like having another child that I have to manage. Many nights spent surfing the net. I eat a very strict Paleo diet with no night shades. Good luck, I have literally felt your pain.

    1. Thanks Shannon
      You are right, it is like having another child, except this is like a demon child that you can’t really controll. Since I submitted this article, I have been taking Bascopan Forte (I live in Australia) which also relieves stomach cramps by relaxing the intestines and have felt much better. I am hoping to go back to work from Monday on a part time basis despite feeling so tired and take it day by day. I will search on the net for the Paleo diet you mentioned as right now I still feel nauseas and have to force myself to eat 3 or 4 bites. Strange enough, I haven’t lost any weight so I guess my underactive Thyroid is to be blamed. Also this week I found out from my Doc that I might have even had Rubella (German Measles), even though I had been vaccinated and had immunity to it when I had my kids. Awaiting blood results to confirm.

  2. Shona, I’m sorry to hear you’re so ill. And it will be hard to get your stomach and guts to settle while you’re on antibiotics. Each time you take your antibiotics, take your probiotic (a strong one containing acidophilus) two hours afterwards, plus take another one at night. That is the right timeframe – if you take them too close to the antibiotic, the antibiotic will kill them off. It strikes me that you may have more than one illness here, and/or you may be suffering from misdiagnoses for years. The Paleo diet or the SCD diet would be good for you, I think. Cut out the wheat substitutes – they can be as bad as the real thing. No spices that irritate the gut (mustard, curry, pepper etc). Stick to vegetables, fruit, fish and a little meat – steamed for preference, then, as you improve, raw food where you can tolerate it. I would avoid nuts while your colon is inflamed. Chew all your food to absolute mush before swallowing.

    There is a constipation protocol to follow on the SCD site ( which you may find helpful. Magnesium is also useful for constipation – I take at least 360mg a day (check with your doctor first). Also, chock your feet up on a low stool or on blocks when sit on the loo – this positions your body in the correct fashion to empty your rectum.

    I hope you feel better soon. :) Trish

    1. Thanks Trish. I am off antibiotics now and I have started taking probiotics. I think its helping. I still have about 4 BMs per day but no bleeding. The joint aches and tiredness are quite bad and I feel nauseas most of the time possibly because of Sulfasalizine tabs – I take 6 per day. I also have swollen glands on the back of my neck n ears. The doctor thinks I may have caught Rubella despite being vaccinated. Awaiting blood test results for confirmation. I think this is a side effect of the Sulfasalizine tab so will see what the GI specialist has to say about this when I see him at the end of this month. As for my diet, I started eating sweet potatoes and and home made chicken soup (chicken with bones, onions, turmeric powder, curry leaves and coconut milk). I seem to handle this well along with banana and a gluten free, yeast free bread made from tapioca flour. I am planning to go back to work from tomorrow and hope that I can cope with that. I will look into the websites you’ve mentioned. Thanks heaps.

      1. Hi Shana, how are you doing? Your story sounds similar to mine and I just thought I’d tell you I was recently diagnosed with Lyme Disease (late stage) – just in case it might be causing your issues too. I know its a long shot but you never know and it definitely causes swollen lymph nodes. Hope you’re feeling much better! Hugs

  3. Hey, I seem to have been able to manage my flare ups pretty decently through out the past year. I was diagnosed in 2008 with proctitus and then UC in 2009. Mesalamine supportories have been my best friend as well as probiotics.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.