Thoughts On : When your chronic illness flares up after time in remission

Flare ups suck. It’s as simple as that. I haven’t had a proper flare up since before surgery (I’ve had a few little flare ups but nothing major) and bloody hell I’d forgotten what they were like. The flare up I’m experiencing at the moment is completely different to when I used to have a bowel and probably not quite as horrible because I don’t have to run to the toilet anymore.

After my surgery, I thought my days of flare ups were behind me. As I have ulcerative colitis, the disease is only in the large bowel however I still have part of my large bowel and rectum which has (very) active disease in it. I didn’t think that a tiny bit of diseased bowel, which isn’t attached to the rest of my digestive system could make me so ill! I’ve genuinely had days in bed feeling like crap and the worst acid reflux which is always great at 21!

The difference between flare ups pre and post surgery

Pre surgery flare ups were the worst, even the ones which didn’t hospitalise me. Colitis flare ups consisted, for me, of bloody diarrhoea, running to the toilet 10+ times a day (and yeah, sometimes I didn’t make it to the toilet), stomach cramps, feeling sick, not eating and I’d loose weight.

Post surgery is a different ball game. My mucous fiscula (which is what the remaining bowel and rectum is called) isn’t attached to the rest of my digestive system so I don’t have the issue of running to the toilet and diarrhoea because of my stoma bag. This makes flare ups a bit more manageable, that’s for sure. However, I am still running to the toilet a bit but just to release blood, mucous and other diseased bowel juice (a lovely image there for you! I’m very sorry). I get an urge to go to the toilet and end up sitting there for like 5 minutes whilst my bowel does what it needs to do. Sometimes it’s fine and it’s just like going to the toilet and you don’t feel it. But during a flare up, I can feel the bowel moving and it’s really painful. I don’t know how to explain it really; it’s like a twisting bruised pain mixed with a more intense feel. (side note, I have no clue if that makes sense to you but that’s how it feels!) 

I also feel drained. Chronic fatigue has really been getting me recently and I have days where getting out of bed is me done. I’m having more chilled days so when it comes to seeing friends I have a better chance of being more alert and present when we’re together. Last Saturday night I was in bed by 7pm and asleep by 10pm and then slept for over 12 hours. Sometimes, you’ve just got to listen to your body and let yourself have those chilled days. I try not to put too much pressure on myself to do everything and plan my life around making sure I’m giving myself rest time. Linked to this, I’m pretty anaemic and trying to take iron tablets right now which really isn’t helping with the whole fatigue thing.

You know that wild Saturday night I just told you about where I was in bed by 7? Yeah, I was also experiencing a lot of pain in my fiscula but it was a very strange night. I had my normal fiscula pain which is annoying and painful (but pretty bearable) but I also started having phantom bowel pains which replicated the flares I used to have pre surgery. It was a really strange experience because I haven’t had phantom bowel since maybe a few months post surgery so nearly 3 years in is quite strange. I also keep getting joint pains and back pains right at the bottom of my back near where the diseased bowel is still there. I’m pretty sure it’s all linked however no one seems to concerned about that at the moment.

How flare ups effect my mental health

Yes, flare ups are physically draining and make me physically ill. BUT they also really play on my mental health too and can leave me feeling depressed and quite anxious. The depression comes because I feel like I can’t do anything again and I’ve turned back into the ‘sick kid’ which I really thought was behind me. It’s so disheartening to see yourself taking a million steps backwards. Over summer, I had a job waitressing, I was at uni, I was always out and about and was what you’d class as ‘normal’. Christmas came and BAM! flare up central started. Out of nowhere, I’m discussing leaving my job and moving back home (which I am at the end of the month), going back onto my meds and rescheduling my surgery to a much sooner date. Everything started to change all at once and it really impacted me and left me feeling a bit meh. However, now I’ve had time to actually process everything, I’m stating to realise that all this change is going to help.

It still doesn’t mean that I’m not feeling upset when I’ve got stomach pains again which sparks my anxiety majorly. I start worrying about whether I’m going to end up back in hospital. I start worrying about the medication I’m going on and how that’s going to affect me. I start worrying there’s something way worse with me than a flare up or that it’s actually crohn’s. It’s got to the point where I’m already having major anxiety about my upcoming surgery and I’m not quite sure how to get out of this downward spiral.

So what’s happening next?

I’ve been talking to my stoma nurses and IBD nurses and we’re trying to come up with a bit of an action plan. I’m starting on a steroid foam enema (I’ll do a whole post on this once I’m actually on it!) to try and bring down the inflammation. I’m desperate to get started on it but I’m not quite sure why because it rarely works but I’m willing to try anything at the moment! I’m also trying to sort out getting a surgery date ASAP but trying to get a hold of my surgeon to get another consultation is impossible it seems! It’s a bit scary but I cannot wait to finally make my stoma permanent and hopefully put going to the hospital all the time behind me!

Ostomy posts are sponsored by SecuriCare and CliniMed
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