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.

What a saga!

So, I had blood and urine tests done in December last year at the hospital which showed I am very low on vitamin D (among other things) as well as dehydrated. My surgeon sent me a letter requested I get a prescription from my GP for Colecalciferol (50,000 units). I had my partner take to letter to the doctor for me because I was working only for it to take over a week to get the prescription! Once I finally did get the prescription, it took a further week to get the medication from the pharmacist because it was a dose they didn’t normally carry and deliveries were delayed due to snow in the area.

I got the meds eventually only to realise they were huge capsules (I thought they’d be smaller, to be honest) that I knew I would have difficulty digesting with my temperamental stoma. I called the doctor and asked if it would be ok for me to break the capsules and empty the power into yoghurt, like I had done before with Lopermide. She said she wasn’t sure and to ask the pharmacist, which I did the next day. Unfortunately, because these are loading doses, the pharmacist said she didn’t think it would be a good idea to break them in case it altered the absorption of the vitamin. She advised I get the meds in tablet form instead which, thankfully, my GP had already done. I get it sent to my local pharmacy and nope! They can’t get them. So, I get my partner to collect the prescription so I can take it to a different pharmacy to see if they can order it instead.

The request letter was made by my surgeon mid-January. It’s been a month I still don’t have medication I can take. This wouldn’t normally annoy me but I’m due to have my stoma take down in just over a week and I haven’t been able to do what my surgeon wanted. I’m tempted to just leave it until after my surgery because then, I may be able to take the capsules instead of wasting even more resources (not to mention money) on getting these tablets when I’ve only got a week and a half to go until the stoma is gone. I guess I’ll see what the other pharmacy says about getting the tablets then go from there.

Worst night in a long time

So, yesterday evening was spent with my partners Oma (she’s German) celebrating her birthday and we had Chinese, which I’m usually fine with. However, shortly after eating it, I found my output had beco. Every watery and the skin under the adhesive was super itchy. I tried to ignore it but by the time I got home a few hours later, it had become painful. I decided to change my bag, which would be the second time that day, and go to bed. That didn’t work; it was still painful and itchy and I couldn’t sleep. My solution was eat half a packet of mini marshmallows and to take a codiene tablet. This has worked so far but I need to make sure I drink plenty today to avoid a blockage.

I’ve been advised by both my GP and my stoma nurse to increase my loperamide intake from four single doses to four double doses per day (I’m not sure on the exact measurements). I started doing that yesterday lunch time and I’m assuming it just needs to get into my system but it seems to be taking its sweet time.

I’m very frustrated and tired but I’m trying to be patient and stay positive. My new blob is not making either easy. I hope everyone is having a good and safe week so far. Rant over.

Friday update

Still haven’t seen my primary doctor today but he’s meant to be in over the weekend so hopefully I’ll get to talk to him then.
For now, they’re keeping me on the IV steroids and antibiotics as it looks like they’re working. I’m guessing it’ll be at least another couple of days before the infection is gone but at least my inflammatory markers are down so fingers crossed, once the c diff is completely clear, I’ll be able to go home.
I really want to get out of here; being in the same small room for over a week is making me a little depressed. I’ll be so happy when they send me home.

I’m a little annoyed with myself today because yesterday I was feeling a lot better compared to Wednesday (in that I didn’t look like death and could actually go more than an hour with having to use the bathroom) but this morning I felt like I’d been hit by a truck; I didn’t sleep as well as the night before and my BM were looking like they’d be every hour again. Thankfully, things seem to have settled now but my stomach muscles are really soar so I’m back to taking paracetamol and codeine, at least for today.

I’m hoping the antibiotics I’m taking for the infection will kick in soon so my weekend of working goes as painlessly as possible. I’ve got Monday and Tuesday off, though, so I can catch up on my sleep. To be honest, I think that’s what I’m really needing; sleep. So, my plan for when I get back from my appointment on Monday is to build a spoonie-nest of blankets and pillows on my sofa and just dose the afternoon away.

I feel like I’m getting worse. I’m still on the prednisolone (25mg daily) and I’ve got my humira on Monday, but it feels like things aren’t getting any better. I’m trying to be as positive as I can to avoid stress, as that seems to be one of my main triggers, and I’m sticking to the low fibre diet as much as I can, but the last few days have been pretty bad. I’m conflicted about calling the helpline because I’m scared of what they might say. Plus, it seems pointless because I’ve got an appointment with my GI on 13th and the nurse may just say wait until then. I also don’t want them to suggest I come in for a flexi then decide I need to stay in the hospital again. I can’t be dealing with yet another hospital stay! I’m trying not to stress about it but I just feel like nothing is working and that surgery may be my only option now.

Sorry for ranting but I just needed to get this stuff off my chest.

I took my last two loading shots of humira last night and it all went fine. I’ll probably get a call to arrange for a nurse to come round and help me later but I’ll just explain that I can do it on my own.

My fiance said it sounded like I’d been shot because of the loud click the pens make when used. The first one wasn’t painful but I felt the needle go in. The second one I didn’t feel at all though so I’m feeling pretty happy about taking them without any issues.

The only thing I struggle with is keeping hold of the pinch of skin as I wait for the yellow bit to appear in the window to show it’s done. I’m sure I’ll get better at it though the more I do it.

I’ve had a productive day today; got my humira delivered this morning (no one’s arranged to come round to help me take it but I’m feeling pretty ok to take it on my own because I did three in the hospital, so I’ll be taking the next two doses tonight), I cleaned out the rats, went out and got a few cooking supplies, and then made gluten-free toffee cupcakes and chocolate brownies.
I’m feeling a lot better today but I’m a little tired now. Looking forward to seeing a friend (who I don’t get to see very often) tomorrow.

Humira sorted!

It’s about a week late but I’m finally getting my humira delivery on Monday morning! I got a call from the healthcare company this afternoon; they said a nurse should be in contact to arrange to come round to ensure I administer the doses correctly on Monday, but after that, I should then receive humira every four weeks and be able to give myself the injections no problem. This has made my day.

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.