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Crohn's Disease Forum » Your Story » 9 yrs with crohns - now it's gone to sh#t


04-18-2015, 12:45 AM   #1
MissPrissy
 
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Join Date: Apr 2015
Location: New Zealand
9 yrs with crohns - now it's gone to sh#t

Hey everyone, long time lurker, new poster

So I was diagnosed with Crohns in 2006 after watching Oprah (yes my specialist found that hilarious) and took mesalazine twice a day for years with no issues. My symptoms were only diarrhoea and nothing else. Maybe once a year I had a flare and took prednisone for a few days and was fine. Throughout this I was a lacto-ova vegetarian with no issues at all.

When my marriage broke up in 2012 I had a bloody bowel movement for the first time but then went back to normal. Then in 2014 I moved to New Zealand and had problems pretty much from the start. My diarrhoea increased to the point I was having t take prednisone every other week. I flew home and saw my specialist who was greatly concerned and wanted me to see one in NZ asap. I let him know I was on a wait list... Finally get a letter to see one at the end of January this year. Unfortunately ten days before this I woke up in immense pain. I had no idea what was going on, I could barely walk. I managed to get to work only to double over and burst into tears. I was helped to the sick room and ended up going to hospital via ambulance with suspected appendicitis. I was put into ER, then surgery ward, then assessment ward, then surgery ward. For three days I saw groups of surgeons and gastro specialists while they tried to diagnose me. I was pumped full of steroids and antibiotics with no food (not that I was hungry). Then I had a CT scan(?) which showed a large inflammation in my colon - where I didn't previously have Crohns and diagnosed with a severe flare.

Since then I've been changed onto asacol and advised by the gastro specialists and nurse to add fish to my diet. The dietician I saw told me she couldn't help as diet has absolutely no impact to my Crohns (yup, that's what she really said). The nurse reviewed my results and agreed I should go gluten free, keep dairy (while I can tolerate it) and cut out onions, eggplant, legumes, lettuces, brown bread/rice, spicy/fatty food.

Since January I've been doing well and finished a tapered prednisone course in March. Learning to cook and eat fish after 17 years vegetarian has been interesting and challenging to say the least. All was good until today. I was in the supermarket when the stomach pain started and then I had to go. I rushed to the toilets and they were both in use. After hopping around for a couple of minutes I rushed across the road to a beauty parlour and begged to use their loo. So. Embarrassing. Now I'm sitting at home in pain and wondering if I've gone down hill again. I have no idea how to recognise flare symptoms early on. Have I pushed my diet too much? Am I too stressed? Has the medication stopped working? My confidence has plummeted again and I'm almost too scared to move

Last edited by MissPrissy; 04-18-2015 at 04:20 AM.
04-18-2015, 08:07 AM   #2
Clash
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A lot of times 5ASA's like asacol are just not enough for CD. They work well for UC since the are geared toward helping the first layer of bowels but since CD is transmural(all layers) they aren't as effective. It sounds as if that is the case for you. You may want to look into other meds approved for CD with a better efficacy profile especially since you seem to need steroids from time to time as that is not ideal and indicative of your med not sufficiently controlling the inflammation.
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Clash
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C age 19
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CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
04-18-2015, 10:09 AM   #3
wildbill_52280
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where did you move from? im wondering if you became worse from low vitamin d, perhaps through a longer winter or something. Vitamin d can help suppress symptoms and is implicated in the development of IBD. Scientists call this the north south gradient of IBD development.
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04-18-2015, 03:28 PM   #4
MissPrissy
 
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Location: New Zealand
I moved from Australia which is a lot warmer than NZ... I have taken a vitamin d supplement for years anyway (as prescribed by my doctor) and now I'm on colecalciferol which seems to be a higher strength vitamin d. I also take flaxseed oil a couple of times a day 😀
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