World IBD Day

Today is World IBD Day and I wanted to share a few things (treatments, symptoms ect) about living with IBD that I have personally experienced.

Symptoms of IBD that I have had include stomach cramps, fatigue, diarrhoea, constipation, weight loss, partial blockages of the small bowel, dehydration, blood in my stool and muscular cramps in the abdomen. I haven’t had all these symptoms at once (thankfully) but I have experienced them all in some capacity and in various combinations.

Treatments I have tried for my IBD include a lot of medications as well as surgery. I have been on anti inflammatory (mesalazine), steroids (prednisolone), immuno-suppressants (azathioprine, mercaptopurine & infliximab), anti-ulcer (omeprazole), antibiotics (co-trimoxazol), meds for bile salt malabsorbtion (colesevelam), as well as vitamin/mineral supplements (folic acid, adcal-d3 & colecalciferol). I have also been on fortisip nutrient drinks and (as of this week) modulen which is a complete nutritional replacement drink.

Other treatments (for lack of a better term) would be surgery. I had my colon removed about two years ago and a temporary end ileostomy (stoma) placed. Although many would assume this has “cured” me of my Ulcerative Colitis, removal of the affected organ sadly does not cure an auto-immune disease.

Side effects of these many treatments are numerous. From the medication alone I suffered with bloating, insomnia, loss/increase of appetite and weight gain/loss. The surgeries came with there own set of side effects which included muscle spasms in my rectum and abdomen, partial blockages of my small bowel, strictures (narrowing of the gut) and ulcers from infection. I also suffered with a case of ileus which is when the muscles that move food through the gut slow down, causing the bowel to effectively stop working for a time. This happened after my second surgery to form my j-pouch and took about three-four weeks to heal. Treatments for it included an NG-tube (a thin tube that goes in through the nose and down the oesophagus into the stomach to extract food and other waste that can’t move into the small intestine), and TPN (Total Parenteral Nutrition – another form of liquid nutrition that is fed via a PICC line (Peripherally Inserted Central Catheter) that goes in through a main line in the upper arm and ends somewhere near the heart).

I think out of all the things I listed here, ileus was the worst. It came on suddenly after surgery and meant I wasn’t allowed food for almost a month. It started with vomiting and my stoma stopped working (meaning nothing was passing through my gut). This is when they inserted the NG tube. They had to replace it once but it stayed in for about two weeks to clear out my stomach. In the meantime, they inserted the PICC line (which can be left for several weeks or even months) and started me on TPN. Eventually, when the NG tube wasn’t bringing anything else up, they removed it and after a couple of days, allowed me to try soup. When that stayed down, I was allowed to try soft foods and, eventually, I was back on normal diet and discharged from hospital after almost four weeks. This is the longest I’ve had to stay in hospital and I hope to never experience it again.

So, there you go. I know it’s a long post but I thought it would be worth sharing as people so often underestimate the impact of IBD on a patients life.

Another update

I’m going to home today! I’ve got two weeks of Modulen, to be assessed after that and potentially continue for a further four weeks, when I’ll have another flexi sigmoidoscopy to see if the ulcers have gone from my small intestine.

They still don’t know if it is Crohn’s or not but my GI is about 90% sure it’s not due to how suddenly it came on and how quickly I reacted to treatment. He said it’s “more likely to come back as inflammation of the small bowel”.

My dietitian said that if it comes back as not Crohn’s, then I can move onto Fortisip drinks instead. The liquid diet will be gentle on my gut as it heals while still giving me the daily nutrients I need.

Apparently, UK GPs don’t like non-Crohn’s patients being put onto Modulen because it is so expensive. That’s why she’s given me two weeks worth from the hospital so that they don’t need to involve my GP yet. Fortisip is cheaper and not specifically targeted at Crohn’s patients, so my GP shouldn’t mind doing a prescription for those if needed.

General update

Definitely getting worse. I’ve had 10 BM this morning and I was up practically all night. My stomach is cramping so I’m using heat pads again, and even the thought of eating anything more interesting than a plain omlette is making me nauseous. I’ve had two fortisip drinks today instead of breakfast and lunch (I normally only have one with my prednisolone) but I have managed a handful of plain crisps and most of a cup of tea at lunch, so… bonus? I guess we’ll see how that goes this afternoon. I’m at work now for the next four days so I could really do with my gut not keeping me awake all night.

General update

So, still no sign of my humira. I’ve spoken to the hospital and been bounced around from place to place but no one seems to know anything, so I’ve left a message with the homecare department in hopes they’ll call me back with some news.

Otherwise, I think I’m feeling better. BM have slowed but still aren’t “normal”. I’m able to get near my recommended daily calories but I’m finding it hard with just food so I’m taking fortisip drinks in the morning. My weight is staying put (just under the minimum weight recommend for my height/gender), so I’m not putting anything on but I’m losing anymore either.

I think my insomnia is slowly going too; I woke up around two this morning but didn’t take hours to get back to sleep again so I actually slept for a lot longer than I have been. I hope this continues.

I’m also now working for the rest of the week (although, only short shifts) so I’ll be kept busy. I’m hoping it’ll help take my mind off my flare and just get me back into a normal working routine. There has been talk of possibly cutting some of my hours, which I would rather not do, but we’ll see.

Update for Wednesday

Had a somewhat productive day so far; sorted out my doctors appointment, picked up stuff for dinner on Friday (I’ve got a friend coming round who I haven’t seen in ages), and I’ve even done a few design sketches for my next cosplay idea for London Comic Con in May.

My legs were pretty tired after walking to and from the doctors, but I’m relaxing now, watching Supernatural season 10, and playing on my tablet. I’m feeling a lot better today, even though I didn’t sleep well last night. Bathroom breaks are still quite frequent but not as daunting as they were a week ago. I seem to be regaining my appetite little by little too but I’m still struggling to regain the weight I lost. Thank goodness for Fortisip drinks; I’m only having one per day, because I don’t want to become reliant on them, but they help towards my daily calories which I can’t do with food alone at the moment.

Finally have all of my medication from the hospital

They’ve over-done it a bit though as I know have enough mercaptopurine and mesalasine to last me several months! I’ve got nine weeks of prednisolone (the extra week of 40mg daily was mostly given whilst in hospital, so only eight weeks left). I’m taking Adcal-D3, co-trimoxazole and colicalciferal for the duration of the steroid course, and the next humira doses are in just over a week. Then it’s once every two weeks.

They also gave me some fortisip drinks, like last time, to help get my nutrition intake whilst I recover.

I’m exhausted from going through everything but I’ll admit I’d be totally lost if I didn’t have Medisafe on my phone. For those who don’t know, it’s an app that allows you to list all your medications, when and how many you have to take, and it’ll remind you to take them at the right times. You can “take”, “skip”, or “reschedule” meds which is so much easier than setting alarms all over the place. It can be a tad glitch-y but it’s been mostly fine for me. I’m sure there are other medication apps out there but this is the one I found works for me. Does anyone else you an app like this to keep track of their meds?

So, I still don’t have my meds from the hospital because they didn’t tell the day nurses it needed doing. I now need to call the ward again tomorrow to see if it’s all ready and then, hopefully, go and collect them all. It’s a good thing they had three days worth of prednisolone to give me yesterday otherwise I’d be in trouble. I just hope they also give me some fortisip because food is still a bit of a challenge for me.