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Crohn's Disease Forum » Your Story » New to forum and just diagnosed - feeling sorry for myself :(


07-24-2014, 05:53 AM   #1
louisaedwards19
 
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New to forum and just diagnosed - feeling sorry for myself :(

I've been suffering with extremely back stomach problems for over a year now and have just been diagnosed with Crohn's after many, many tests. It started with bloating and gas after certain products, firsty coke and began to escalate from there. The more I had a food or drink the worse the effect got until within 10 minuets of having a sip or nibble of something bad I'd be sprinting to the loo. The main culprits of this started off as fruit, cheese and gluten so I asked for intolerance/allergy tests for these.

Before I go any further, I feel like I should describe my previous main health problem, my allergies. I've been allergic to peanuts and soy since birth but have always been able to eat others such as hazelnuts (Nutella was always a favorite for me) and soy sauce (soy milk causing sever reactions as with peanuts) but at around 18 I began experiencing anaphylaxis on a weekly basis and had blood tests which showed newly developed allergies to paprika and coconut.

Because I had developed these allergies so late in li it was thought that it was possible for more of these to develop. All the tests came back negative. I then visited my GP last summer to see what else could be the problem and was given IBS medication to take 30 mins prior to eating. These helped marginally for about a weeks and then because pointless again.

I was loosing weight dramatically, being a very heavy 17st7lb and the start of my illness and went back to the GP who ran blood test after blood test and could see nothing wrong. I had to reduce my diet in September to meat and rice as everything else caused an insane amount of pain and diarrhea. It's a good job I worked for the family business at home so had easy access to the loo most of the day but staying as my fiance's army barracks at night I would often have to speed home to use the loo as the toilets there were very public.

I was referred to my GI consultant in November and was told that they would do both an endoscopy and colonoscopy and the same time and, luckily, due to my panic attack on discussion of this, I would be pretty much knocked out for the duration of the procedure.

Lucky for me December wasn't too bad. My stomach was okay on my meat and rice diet and I managed to have a plate of these at my wedding on the 14th (although I couldn't have a starter, desert or my own wedding cake). In early January the procedures went quite well, having no recollection of it but everything looked normal at both ends and all biopsied came back fine. I know this might sound quite strange but the Picolax was actually quite a nice experience for me. Much less painful than how it normally feels going to the loo and left me feeling very light and clean after such a low fiber diet for the last 7 months.

I was then scheduled for a small intestine endoscopy with a pill cam in April but during March I got so much worse. Everything I ate or drank, even water, would come out pretty instantly and my GI an GP put me on budesonide as Crohns was the main concern at that point. This helped for a bit but my pill cam result came back and the view was too poor and it had to be done again and the budesonide was starting to fail me. The second test was done in June and showed nothing so Crohns was ruled out, but the pill cam didn't quite get to my colon during the recording. An MRI was scheduled and an xray and ultrasound was done a couple weeks before this to make sure the cam had made its way out so I didn't get a perforated gut due to the magnets.

The MRI scan has now been checked and I saw my GI on Tuesday. It shows the last 5-8cm of my small intestines have a very thick wall leaving the smallest passage, which explains why the pill cam took so long to make its way out. I've been told they're treating me for Crohns an surgery is a possibility. I'm back on budesonide for a month to see if it helps again at all but I'm not feeling hopeful. They're planning another colonoscopy in the next couple of months but what's frustrating now is the wait. I've been living off nothing but rice for the last 4 months and just want to cry all the time. It's the most simple foods that I miss the most, like fruit, veg and pasta.

I'm now down to 11st5lb so have lost over 6st and I feel that if I hadn't been so big before I got ill things may have been treated with a bit more urgency. It's waiting between each procedure which was most frustrating before but now its wating to see if medication is going to work. Time just seems to go so slow!
07-24-2014, 06:02 AM   #2
DJW
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Hi and welcome. Sorry to hear you're having a rough time. Waiting is so difficult.

Sending you my support.
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07-24-2014, 06:33 AM   #3
superzeeman
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Welcome to the forum but sorry you feel poor. This is a terrible disease that nobody deserves. I hope you find relief in the medications you are taking. Waiting is always the worst.
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07-24-2014, 07:09 AM   #4
scottsma
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Hello and welcome to the forum no one wants to be a part of.
Having said that,you will get lots of support,advice and friendship.
Diagnosis does seem endless when you're feeling sick and stressed,but I hope you will start to feel better soon.Please keep us up dated.
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Crohn's Disease Forum » Your Story » New to forum and just diagnosed - feeling sorry for myself :(
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