Being diagnosed with IBD

So how did I know at first that something was wrong? I have always had mild stomach issues over the years and in my 20’s my doctors told me I had IBS.I had no reason to disbelieve them as my symptoms were quite mild, I also suffered from chronic mouth ulcers. The mouth ulcer issue I gave up on and just thought well this must be normal for me, but they have plagued me for most of my adult life.

In March 2016 I was having pains in my stomach that felt like someone was gripping me from the inside and had me doubled over in agony, as well as mouth ulcers for months at a time. I rang 111 one night as the stomach pain was so bad it had me on the floor,  they sent me to an out of hours doctor but unfortunately nothing could be done as he said I needed to be referred to a consultant by my own GP, as it didn’t seem like appendicitis or anything  serious just IBS.

I saw my GP and got 2 appointments booked one for an Oral specialist and one for a Gastro specialist. The appointments were a few months away in which time my stomach pain eased but my mouth ulcers steadily got worse.

I saw the oral consultant and very stupidly cancelled the gastro one thinking my stomach was fine. The oral specialist took swabs and I had a few appointments before the told me they thought it was gastro related and there was nothing further they could do, although they did recommend some mouthwash called Difllam which let me tell you is a life saver when you have multiple mouth ulcers.

Skip to October 2016 – the stomach pains came back with a vengeance! I was also getting very bad diarrhoea which was becoming more and more frequent.

I went back to doctors and saw a locum GP who was utterly convinced it was IBS and gave me Colfac IBS tablets for the pain and sent me on my way. 2 weeks later sure enough I was back telling them I had the same stomach pain, saw a different doctor who didn’t prescribe me anything and said to wait another few weeks.

By this time I’d had enough, I just sat in my car and cried.

Why would nobody listen? Why was I being made to feel it was all in my head?

Work was going down hill, I couldn’t function because I was in so much pain everyday. I was in tears at my desk most days crippled over in pain and utterly miserable.

A week later I saw my own GP and she gave me stronger tablets for my “IBS” and some tramadol. I asked if I could be referred again or sent for some tests. I was referred for an ultrasound,  which I had quite quickly and all this showed was mild inflammation in my liver and that I had a fatty liver. I knew I didn’t have gallstones as my gallbladder was removed about 9 years ago which I think was probably going to be their first port of call.

GP follow up I was referred to a gastro team but was told by the reception staff that the appointment wouldn’t be until March 2017. I broke down and cried right there and then in the surgery. I was stood at a little window blubbing my eyes out to some poor woman who genuinely couldn’t help me get a sooner appointment, so I went on my way.

November came and went and early December was flying by.I was a barely functioning human being and I was flying off the handle at little things like getting up to put the washer on or having to go out with family. I was broken.

Taking matters into my own hands I called my doctors office and told them categorically I could not wait until March to be seen by someone, the lady on the desk said she would check for cancellations and call me back. Needless to say I was sceptical given my gp’s track record.

An hour later I got a phone call at work stating someone had cancelled on the 22nd of December at a Community hospital that wasn’t really my area but wasn’t too far to travel either. It was like a Christmas Miracle.

My consultant was lovely, he listened and could see I was genuinely in pain and suffering from the multiple toilet trips, I was also struggling eating by this time, a few mouthfuls of food and I was full.

I had a stool sample taken, bloods and a colonoscopy and gastroscopy (or as I like to call it camera up the bum and one down the throat)  booked for the end of Jan 2017.

I struggled through Christmas Dinner, I felt a bit like what I think a walking corpse would be like. It was a nightmare before Christmas but without the fun and singing. I felt like I pooped my way through January, and I had lost a stone and a half in this time due to not eating as the pain was too much.

Then the dreaded prep day came!!! This is where you have to starve for 24hours before the test but this isn’t the worst part. My first litre of Movieprep was about to begin (bowel preparation drink) I was to start at 7pm. It is one of the vilest things I have ever tasted, like dirty lemony dishwater. I’m having flash backs just thinking about the dreaded stuff. I tried to chug it, that didn’t work. I tried to drink it slowly, that didn’t work. How on earth I was going to drink 250ml every 15-30 minutes I didn’t know.

Mid way through I projectile vomited all over my living room carpet, and left a nice foamy mess that I had to clean up.

After this the flood gates opened before I had even finished the first litre and luckily I had made the mad dash to the toilet before this happened. Grudgingly I drank it all and headed off to bed. I was up and down like a blue ass fly to the toilet, it is amazing how much poop one human being can hold.

I had to get up at 6.30am and get my lovely second batch of Movieprep ready to start drinking at 7am as I had my appointment at 10am. Now this worried me. Not only did I have to drink more of the foul liquid but what happened if I pooped myself in the mother in laws car on the way to the hospital or in the hospital waiting area. These things were a very real possibility.

I was already running clear like a fountain after my first lot of prep but I battled my way through the 2nd lot, I got 2/3rds in and I couldn’t face drinking anymore, I think I would have rather drank my own wee at that point.

My lift finally arrived and after a butt clenching trip to the hospital, it was camera time, just not the cute snapchat or Instagram type.

Now here is where I found things got interesting or weird I suppose it depends on your perception. This bit is a little fuzzy on my part.

I was in my lovely stylish blue hospital gown and I opted for sedation. So I had a cannula put into my hand, which is the needle they use to knock you out or should I say sedate you.They injected the stuff into my hand and this is where time is warped a little bit.

I had my throat sprayed with banana flavoured numbing stuff and I also had tube put up my nose, which I can only assume was oxygen. I was lying down (I think) and they passed a tube into my throat through a mouth guard to have a look down into my stomach. I didn’t feel a thing, no gagging, nothing and this felt like it was over very quickly.

Now for the special looking up bum time. I am aware that there was quite a number of people in the room, 3 or 4 at a gues. I was facing a tv screen for when they passed the camera up my rectum. To be honest it really wasn’t as embarrassing as I thought it would have been as the staff were so nice and lovely.

The sedation doesn’t knock you completely out, I was fully conscious and able to see the screen as the camera snaked its way through my intestinal tract. It was fascinating to watch, but also kind of gross. The nurse explained what she could see and they also took biopsies from some of the intestinal lining. I saw like a mini grabber thing pull at my skin and also felt a little tug on my insides when this happened.

When this was all done the lady told me she suspected Crohns Disease due to patchy ulceration in my digestive tract and also inflammation, this was while I was being wheeled out towards recovery.

It was a bit of a shock as I hadn’t really heard much about this disease or what it meant for me? I spent a little time in recovery feeling bloated from the air they put inside you and thinking I was going to explode all over the bed I was in. I thought I done a little poop at one point but turns out it was just lubricant from the procedure.I was told I was allowed to go once I’d done and big fart! And then they gave me some tea and a sandwich, a short while later someone came back with a sheet which just said Gastritis and inflammation throughout digestive tract and that I would get the results in a few weeks.

6 weeks went by and I still did not have any results, I chased my GP, I chased the hospital – I was told that my biopsies still hadn’t been analysed and without that they couldn’t begin treatment. One night I was in so much pain I couldn’t sleep, I was getting thinner and weaker and I didn’t know what to do, at this point I was at my lowest and I wished I was dead.

Now this may seem a little dramatic or twisted, but at this time I was not thinking clearly as my life had just become a daily assault on my senses from pain and I couldn’t get away from it.

In the morning I rung the consultants office and had yet another cry to some reception staff, I begged her for some help and told her I was struggling. She told me she would email my consultant and come back to me. Sure enough like a little caring angel she had sorted things out. My own consultant called me the same day, I was very surprised. He asked if I could come and pick up a prescription the same day and quickly bob in even though he had other appointments.

My biopsy results were still not back but he was sure it was inflammatory bowel disease, more importantly Crohn’s Disease from the Colonoscopy pictures and that my treatment should be a course of steroids for 8 weeks (Prednisone) & Octasa ongoing.

I didn’t get much opportunity to chat to him on this day but it was the start of my journey living with IBD, I have found some amazingly valuable information on the Crohn’s & Colitis UK Facebook group and its wonderful members, who can be found here at https://www.facebook.com/crohnsandcolitisuk/ And I hope that I will continue to update my blog for treatments I have had since diagnosis and things I have learnt from my own experiences and through the help of others. Thanks for reading the journey so far…………

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