Davina’s Ulcerative Colitis Story

Hi! I was diagnosed with Ulcerative Colitis 2 months ago, just 1 week before my 30th birthday.

Talk about timing! March this year is when everything went pear-shaped…I got my tonsils removed due to years of tonsillitis and constant antibiotics, then 3 days later hemorrhaged, was rushed to ER via ambulance for emergency surgery, then ended up chocking and swallowing the packing tape they had stitched in my cavities to avoid another bleed. For the next 2 months they pumped me with large doses of antibiotics first to avoid infection, and then when my UC symptoms started to appear, they would give me more and more antibiotics. At the same time I was taking very strong pain killers from the tonsil surgery which in turn caused severe constipation for 3 weeks. So basically the antibiotics they were pumping into me were sitting in my gut and not able to get out! Strangely for me, my UC symptoms started all in the upper half rather than down below. I first started t o feel a strange ‘lump in the throat’ feeling, then got wheezy and starting having terrible coughing fits, then started to have reflux so bad that I would reflux up large amounts of blood, then a severe, constant cramping pain underneath my rib cage. Each doctor would have a different opinion, eg: ‘you’ve got reactive airways from the surgery, here’s a script for prednisolone…(found out quickly I’m allergic to it!) another: ‘you’ve got severe GERD, take gaviscon, zantac and somac and have an endoscopy…and you might as well have some antibiotics also’ (endoscopy came back clear except the valve between my stomach and esophegous was a bit loose. The verdict? ‘as well as all the proton pumps meds and antacids that you’re taking, here’s a script for mitillium as well…and take more antibiotics!’ none of the medications were helping the reflux and the pain behind my right rib was getting worse. All I could eat was chicken, fish, pumpkin, carrots, rice and potatoes. More tests and scans were done for suspected gallstones, pancreas inflammation, liver problems…all came back clear. Saw a new gastroenterologist who was convinced the packing tape I had swallowed in march after surgery had not dissolved and was stuck in my small intestines so booked me in for an endoscopy. He thought he might as well do a colonoscopy while he was at it. It was only during the two week wait for these procedures that I started to get severe diarrhea, blood and mucus. I thought I was dying, I had dropped from 70kg to 55kg, was in bed from weakness and unable to care for my beautiful 2 year old boy, Jonah. My husband and mum have both been so supportive during this time!

Gastroenterologist didn’t find anything abnormal with endoscopy but was completely shocked when he did the colonoscopy! Apparently my whole lower bowel is completely covered from top to bottom with ulcers! He put me straight on sulfasalazine which started to work within 3 days but unfortunately got a nasty reaction to it (rash all over body, kidney function poor and immune system got really low) so now I am on 4000mg mesalazine a day. Funnily enough, this has helped heaps with my reflux and I am no longer taking any of the reflux meds. However, when I do flare up, the severe reflux including blood comes back! Strange…

I have tried the SCD quite a few times but unfortunately the 24 hr homemade dry curd cheese causes a flare, as does the SCD chicken stock (maybe the onions in it, even though it’s well strained?) and also the almond flour in the muffins…. ANYTHING I eat apart from chicken, fish, and root veggies causes a flair…I am so sorry this is such a long post, I didn’t realize how much venting I had in me!!! I am going in for another colonoscopy tomorrow for further biopsy/tests as gastroenterologist thinks I might have something else going in there apart from the UC such as an infection or something.

I’ve got so many questions because I keep hearing conflicting information from different specialists and doctors. My gastroenterologist had told me on initial diagnosis that with UC there are no short or long term side effects of mesalazine and that I can eat whatever I want. Yeah right! food is a major cause of my flares as it looks as though for so many other people who have posted on this site.

I guess my main questions are has anyone:

1) Taken large amounts of antibiotics and then been diagnosed with UC?

2) Have or had reflex problems with their UC?

3) Know of other foods that are gentle on the intestines and are not likely to cause a flare?

4) Taking mesalazine and notice shortly after taking their dose they feel a bit spaced out or vague and heart rate drops? Mine gets in the low 50s then after a few hours gets back up again

Once again I am so sorry for the above blabbering! I hope that everyone is having a wonderful and hopefully flare free day today!

 

Medications:

Mesalazine 4000mg p/d

Allergic to Prednisolone and Sulfalazine

 

 

Submitted by Davina in the Colitis Venting Area

 

 

Some Previous Colitis Stories that Based on the Above Questions:

Scared to Take Antibiotics

Gut Bacteria and the Effects of Antibiotics – Video with Adam

Gut Bacteria and How Antibiotics Change our Flora

Ulcerative Colitis Medication Survey Results

 




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7 Responses to Davina’s Ulcerative Colitis Story

  1. Trish August 20, 2011 at 1:29 am #

    Hi Davina. I’m sorry to hear you are so poorly.
    * I can’t advise on the drug you’re taking, as I only took it for six weeks and then weaned off.
    * I too was diagnosed with UC after antibiotic use. I had had ‘IBS’for 28 years, (even with bleeding and a sigmoidoscopy the docs didn’t realise I actually had UC) and in 2005 I got campylobacter food poisoning and had three consecutive courses of antibiotics to try kill it. My symptoms abated but didn’t disappear (down from 17 bms in six hours to 6 in the morning and then more in the evening and a lot of nausea) and I lost 28lbs in weight in 12 weeks. A colonoscopy found ulcers throughout the rectum, and the ascending, transverse and descending colon. I went on SCD the following day (along with the Pentasa I was prescribed, but was keen to get off) and the symptoms began to abate almost immediately. I took Pentasa for six weeks and then the GI said I could come off it as I was symptom-free and he thought maybe he’d ‘made the wrong diagnosis’, LOL. Nah, it’s UC, as time has told, but it is currently under control with SCD.

    * I also have reflux, which I strongly suspect is due to two consecutive car crashes where I sustained identical seatbelt injuries. I deal with that by not eating fatty foods, sitting up properly to eat, eating in a relaxed manner, having my main meal at lunchtime and only a light snack in the evening. I don’t eat or drink after 8.00pm and I drink a half pint of warm water with 2tsps of apple cider vinegar and one quarter tsp of bicarb of soda before each meal, and also afterwards if I get any reflux. I chock up the head of the bed about 2in (all my husband can bear) and I sleep on a reflux pillow from ARJ Medical, which is fab (can’t remember where I bought it, but you can get it from ivysmedical.com). There are lots of books available to help you with reflux, and a lot of free info on the web too. I still take a Gaviscon at night if I need one, but that is a rare thing.

    * Re the SCD, you need to give yourself a lot of time to heal – you’ve only been diagnosed eight weeks! Remember that your gut is scratched, sore, infected, full of ulcers – I think you are trying to go much too quickly. Visit http://www.breakingtheviciouscycle.info constantly, and make sure you’re following the book Breaking the Vicious Cycle. Try the chicken stock without the onions (you might be allergic to alliums). Don’t eat the DCCC if it makes you sick. Does the yoghurt also make you sick? If so, order SCD-compliant lactobacillus from Lucy’s Kitchen Shop. There are plenty of SCD-ers who can’t eat dairy at all. Almond-flour products are ADVANCED SCD – I would not try them for months, if I were you (I don’t eat them at all, actually). If you CAN manage on chicken, fish and root veg, then this is a good, balanced diet – stay on it for now. Once your symptoms subside, try introducing a new food every three days, and keep notes – it’s imperative to keep a diary of your food and your symptoms. It is very two steps forward one step back with UC and the slightest thing can knock you off balance (I once ate 10 olives at a dinner party and they were in a hot brine – I was ill for 10 days). Pumpkin, marrow, tomatoes and courgettes are generally well tolerated by SCD-ers, though many have to peel and de-seed the courgettes. But everyone is different – just because a thing is permitted on SCD doesn’t mean that it’s good for you personally. It has taken you years to get this sick – remember it will take months or years to get better, and be patient. Do persevere. I know it can seem overwhelming at first, but SCD gives you a powerful tool in your own healing process – especially valuable at a time when you feel so prodded around by doctors. Good luck. :) Trish

  2. Dove August 20, 2011 at 7:24 pm #

    Thanks so much Trish for your advice, I really appreciate it! I have done as you have suggested and a big pot of chicken soup is now simmering away without onions this time! Just got results back from latest colonoscopy and I’ve got severe pseudomembranous colitis so am now taking Vancomycin to try and knock it on the head. Unfortunately the DCCC and yoghurt both upset my digestive system. I will look at ordering the the probiotics from Lucy’s Kitchen Shop. Hopefully they ship outside USA, as I live in Australia :)

    I wonder if I should wait till I have finished my course of Vancomycin before I start taking probiotics…

    Have a lovely weekend, Davina

  3. Gabe August 21, 2011 at 7:23 am #

    Hi Davina, hope things are settling down for you. I have had UC for three years, just had my colon removed since it was beyond healing. I am now down the road of having a j-pouch done.

    As to your questions…I never had any reflux from my UC, although I was given prolesec to aid in that. For me it was so the medications would not cause the reflux.

    I was on Mesalazine (asacol) 4800mg a day. Was on prednisone as well. That medication dosage varied and it took me forever to get off of it.

    As to the foods, I found that it is different for everyone. I was advised against eating all raw vegetables and fruits. Spicy and acidic foods were not good as well. But for most things it was a hit and miss. I got to the point of keeping track of what I ate. I would definitely mark down what I could not eat. So my advice on that would be to keep track of what you eat and how it affects you and not to eat what really affects you.
    I had tried different diets and such but it always came back to some foods I could handle and some I could not. For me that is how it went. I do not know if it was much help but for this illness I think any help is wanted or advice taken at least.

    Good luck to you and keep your head up, there are many that will answer what they can and direct you to whom you may try talking too. Again good luck.

    Gabe

    • Dove August 22, 2011 at 5:52 pm #

      Thanks for your advice Gabe. Can I ask, do you ever make your own veggie juices? You say raw veggies are no good with you and I know alot of UCrs including myself it would be the same, but I wonder if our bodies could at least tolerate the juice of certain veggies, ie carrot juice? I’ve been craving vitamins from a fresh, uncooked source recently!

  4. Trish August 22, 2011 at 5:42 am #

    Hi again Davina. Fingers crossed that you can manage the chicken soup without the onions. :) (A lot of people can’t tolerate alliums.) They are giving you the Vancomycin to kill off C Diff, I expect? Take a probiotic two hours after each dose of antibiotic, to repopulate your gut with flora. Ask the pharmacist the maximum dose, and take that. You might also find S Boulaardi (sp?) helpful – it’s a ‘good’ yeast. Really hope you feel better soon. BTW: with my UC, I have to follow the ‘big cup of yoghurt, dose of probiotics’ formula every time I take antibiotics, plus take steroids to minimise the effects and I can’t take broad-spectrums such as amoxycillin at all (just added Isilox to the banned list). I just try real hard not to get sick, LOL, as treatment is a bit of a nightmare now. Better health soon. :)

    • Dove August 22, 2011 at 6:02 pm #

      Hi Trish, chicken soup without onions went down a treat! Thanks for that suggestion, so tasty! I am making another batch today :) it’s amazing how much more energy its given me, must be packed full of much needed nutrients.  have a lovely day, davina

  5. Trish August 25, 2011 at 1:06 am #

    Hi Davina. So pleased to hear the soup worked without the onions. Maybe alliums are something you just need to avoid or be careful with. Keep on keeping on – don’t forget to eat something every three hours. The chicken soup is great for a flare – the long cooking time pulls a lot of stodge out of the bones, I think. Keep about 1.5litres of it in the freezer, just in case! You asked earlier about carrot juice and yes, it does help to destroy the matrix of the food, pull out anything that could irritate the gut, etc – it’s a bit like pre-digesting it. Also, cooked veg/fruit is far better than raw when you’re ill. I didn’t eat raw foods for about six weeks when starting SCD and introduced them very gradually. (A single lettuce leaf would put my sister in bed for days, btw.) I bake a lot of apples – like 9 at a time, and have these for breakfast and desserts, stuffed with raisins and cinnamon (I don’t eat the skins). And the SCD grape jelly is great – really flavoursome, so do try it. Bought myself a steam juicer last year, which makes clear, sterile juice – another great thing for SCDers.

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