Let’s talk Indeterminate Colitis: Now [Part 3]

Welcome to part 3. Sorry for the wait, I’ve been training for my new job and thus not been around enough, or awake enough, to do another post. But in these 5 minutes of quiet, let’s carry on this story. So in this one, I’m going to talk about where I am now with my illness, and from then you’re up to speed!

Also, this is quite an apt time as we are slap bang in the middle of Crohns and Colitis Awareness Week here in the UK (1st-7th December), so here is me raising awareness of what it’s been like living with Greg!

Since my diagnosis and NG tube 11 years ago, Greg has never been that serious since. Thankfully Pentasa seemed to do the job, and helped to keep him in check. Don’t get me wrong, I had my ups and downs and it took a while to work out what worked for me lifestyle wise, but we finally seemed to reach an understanding and we weren’t at too many odds with each other. My friends got to know what was wrong with me (though never the details, it was just known as ‘the stomach problem’), and I got to know what I was comfortable with. In my own space, I have always been the girl who is hyper-aware of the noises of her stomach, the food she’s eating, and precisely what kind of bowel movements she’s had that day. I can tell the difference between a ‘Greg’ stomach ache and a ‘something else entirely’ stomach ache. I know what each of those ‘Greg’ stomach aches mean; is it something I’ve eaten? Is it stress? Is it just because I’ve laid in an odd position and I’m now just excessively gassy? Yep, I know them all. When you spend so much time monitoring your own bodily functions, you can become quite adept at knowing what is going on…most the time.Sometimes, he still manages to surprise me.

I went to University and read psychology, and that was a whole new ground to navigate. Stress became a massive hurdle for me to jump, and many of my small flares with Greg stemmed from that. I was also diagnosed with depression in my second year and I came to learn the vicious cycle that was depression and colitis, colitis and depression. If I was going though a bad spell, I stopped looking after myself, I stopped eating properly, I stopped exercising, and I stopped taking my medication for pretty much everything. This upset Greg as I was not holding up my end of the bargain of making his job easy, and thus he threw a fit. I then felt even more terrible, sunk into an even worse state, and everything went round in circles. When I was diagnosed and started getting help, it was one of the first things I realised and that made a huge difference. Greg became much like a pet when I was depressed, and I trained myself to look after him when I was ill, as ‘who would if I wasn’t there?’. If I just took my medication for that day, and if I just ate as well as I could for that day, for Greg, then everything else didn’t matter. My depression and my colitis don’t cooperate very well, despite often being comorbid with one another (like many chronic and mental illnesses), and I often find myself choosing between the two. Anyway…moving along the story.

In my third year, I finally hit a wall. After almost 10 years of seemingly good relations, I can hardly be angry that it started going downhill. It all started when I went in for a colonoscopy just before I went back for uni. This is where they found out my inflammation had moved to my ileum, and thus half-diagnosed crohns. It’s normal to expect a small flare up after this (I mean, come on, you’ve just had a camera shoved through your intestine, it’s going to cause some aggravation), but this just didn’t stop. I had the worse symptoms I’d had in a while for weeks. I was in and out the doctors and we couldn’t find a cause or reason why. (NB: I am not saying my colonoscopy caused the damage etc, they’re very safe, it’s just the point in time I remember it suddenly getting bad). And then suddenly, in just one day, I ended up in the back of an ambulance being taken to hospital for the worst pain you can possible imagine in my lower back. I was throwing up, passing out, and could barely move, it was that bad. Turns out that was kidney stones. Not surprising apparently, seems they are quite common in crohns/colitis sufferers, and much of the medication used to treat it (Pentasa included) can cause kidney damage and stones. They put my recent flare up down to my stones and sent me on my way. Unfortunately, in my time there, they had also pumped me full of antibiotics to combat the slight infection I had brewing in my left kidney (antibiotics are not a good thing for IBD sufferers as they strip your intestine of any good bacteria you have and make your intestine quite raw). Following on from that, I then had an apparent adverse reaction to the pill I was on meaning that for 3 weeks of every month I was basically aggravating Greg more and more. It took a while to figure this out, and by the time I’d stopped that pill, and then combined with my previous flare up and the copious amounts of antibiotics in hospital, the damage was already done (NB: Again, I’m not saying this is their fault, it is what it is, and when you have a number of illnesses, you have to treat the immediate one first. Many sufferers would have recovered fine, but it just seemed to be Greg’s time). Pentasa was no longer enough.

My specialist nurse (who is quite literally the saint in my life) sat me down and told me that it was time to move up the medication ladder. I was currently on rung 1, she wanted to skip rung 2, and go straight to rung 3. Once you go up, you don’t come back down; that terrified me. I held off as long as I could, doing everything in my power to avoid a flare up but it was no good. Azathioprine was added to my prescription. Aza (as I will now call it), is an immunosuppressive drug commonly used in organ transplant patients and autoimmune disease patients – it lowers your immune system to stop it attacking, in this case, yourself. It also has a wealth of side-effects and things to monitor, so for every week when I first started I had to go for blood tests to check my bone profile, liver profile, and my pancreas (because who knew that one tiny tablet could fuck up so much stuff). It also means I am incredibly susceptible to other illnesses such as colds and flu etc, and coming into winter, this may have been the worst time to start. It also makes me quite nauseous, gassy, and very very slow to heal; I have a scratch on my leg from about two weeks ago (not deep at all) that is only just beginning to properly scab over. Furthermore, Greg has seemingly become hyper-sensitive to everything he was already sensitive to, so that’s taking some getting used to.

On the upside though, through the help of 9 tablets a day (8 pentasa, 1 aza) my stomach has been much better and Greg and I seem to be back on the same page. We’re both working things out together again, but after such a sudden dip we seem to be back on the up. So that’s where I am now, and hopefully, that’s where I’ll continue to be for a little while longer. I know I have been extremely lucky with my illness in the last 11 years, and I also know that it is definitely not like this for everybody. My cousin who also has crohns is barely 30 and yet has undergone various surgeries, takes steroid-based medication, and practically lived in the hospital for a period of his life. I know some people would kill to be in my position. There is only a short step between my state and his, and so I believe in learning to appreciate just what we have, and the time we have it. Don’t get me wrong, I moan a lot about Greg, but deep down, I understand that it may not always be this way and so I appreciate every little bit of leeway he gives me. I hope no one takes this as me being unappreciative when it could be so much worse.

This catch up on my indeterminate colitis took much more writing than I expected, but if you’ve made it through to the end of this history breakdown, then I truly applaud you.

Until next time, thank you.

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