Bad-ish news

I had another CT scan today and it showed two things; 1) my bladder had a litre of liquid in it that I didn’t feel, resulting in me having a cathatar inserted. It immediately drained about half so it’s clear I need it.

The second thing it showed was a hole in my jpouch where intestinal waste has leaked into my abdominal cavity. The drain that was placed into my pouch yesterday has now gone through that hole and is draining as much as possible but itse still quite painful. The doctors have put me onto their surgical list for tomorrow to remove the pouch and give me a permanent stoma.

This is quite a bit to process and I haven’t really talked to anyone about it much. I will do my best to absorb this overnight but I don’t think I’m going to sleep too well tonight.

Small Achievements #1

I was able to stand up with little to no assistance.

For context, I’ve had a procedure that involved putting me under anaesthetic and performing a pouchoscopy (a scope of my jpouch) and placing a cathatar into my pouch so what is currently trapped in there can drain. The opening to my pouch is so inflamed, it’s practically closed, resulting in me not having passed ANYTHING for over a week now. It has been excruciatingly painful and my stomach has been very distended. This meant I could barely leave my bed without freezing in pain at every movement, let alone standing and walking.

I’m by no means healed but I am comfortable, at least, so healing should follow soon.

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.

First day back!

I returned to work today. I’m starting slightly later but otherwise doing normal hours for the time being. My hours will likely go back to full time next week but it’s not long until I finish there and start working at the local hospital. I’m a little nervous about starting a new job because of my UC and recent surgery but at the same time really looking forward to it. (I’m going to do a post about starting a new job with chronic illness later).

Anyway, back to today; today went really well. We weren’t too busy so I was able to take it easy. I was able to stand longer than I thought I would so that’s a bonus, and it felt good to be getting back into the swing of things. I’m very tired now but not more than is normal for me.

As for how my general recovery is going, it’s going pretty well. My stomach is still swollen, particularly around my wound, but the wound is looking more like a scar and less like I’ve just had surgery. I don’t need to keep a dressing on it now which is great because I have a slight allergy to the adhesive. The skin where my ostomy bag used to sit is super itchy at times but e45 cream works to cool it down.

Four weeks later!

Yesterday was the four week mark since having my stoma taken down and my life with a j-pouch began. So, how has it been? Different is probably the best way to describe the last month for me. I’ve had good days and bad days. On the good, my pain levels have been pretty low and I’ve had a decent appetite which hasn’t caused discomfort when “going”. One bad days though, my pain has spiked and bathroom visits haven’t exactly been pleasant.

I’m taking paracetamol and codeine twice a day at the moment but sometimes I need ito take it more. I take it mostly for my stomach than anything else because occasionally I’ll get cramps which I’ve found recently happen just after eating. They pass soon enough but sometimes it gets a bit too much. Another thing I’ve notice happening this week is mild pain in my legs during the night and after walking around for long periods. I hope that’s not a DVT thing but I’ll be keeping an eye on it and talking to my GP if it continues.

Lastly, I’m due back at work in a week which, at the moment, I’m feeling quite positive about. I want to get back into a normal routine so the sooner I get back to work, the better. I’ve only got a month left with my current job before I leave though as I am starting a new job in May. I’ll be doing a separate post about starting a new job with IBD later so keep an eye out for that.

Day 20 – an update

It’s been almost three weeks since I had my stoma closed and things are going fairly well; I haven’t had any accidents (yet) and I’m slowly reintroducing foods I enjoyed with my stoma. I have found that if I eat too much though (for example a whole oven pizza), I don’t have a fun night. And what I mean by that is a lot of discomfort in both my stomach and my pouch as that much food travels through my gut. I am able to control this with painkillers, though.

My wound was checked by my GP nurse last week. It’s healing nicely but the middle was still a bit open so she left in four of the clips. I’ve got another appointment with her tomorrow where, hopefully, she’ll remove the rest of the clips. I’m looking forward to it being fully healed so I can have a nice bubble bath, something I haven’t been able to do for quite some time.

As for my mobility, unlike last time, my legs haven’t atrophied so walking or standing for any length of time is a lot easier than it was after either of my previous surgeries. My stomach is also not as sore as it was last time. I think both of these are because of how simple and straight forward this last surgery was. Where as back in June, the surgery was quite a bit more complicated (they were reconstructing a lot and moving my guts around quite a bit) and the recovery directly after was difficult due to the aforementioned moving of my guts making them shut down temporarily (otherwise known as ileus). This time was easier as the surgery itself was only two hours long and it involved a lot less handling of my gut meaning I was less likely to develop ileus.

For the most part, I feel fine. I’m able to walk around and do a few household chores but this does tire me out and I find I need to rest for a while before trying to do anything else. I spend a lot of time sitting at the moment (mostly reading or on my computer) but I am starting to go outside. I was able to go for a short walk the other day but, again, this made me quite tired. I’m sure this will improve overtime as it has in the past so I need to be patient, recover isn’t linear.

Day ten of being a j-poucher

Today marks just over a week since I had my loop ileostomy closed and my jpouch put to work properly. I’m not going to lie, it’s been a weird experience gaining back control over when I poop; weird and a bit painful.

I expected it to be painful so I’m not surprised. It’s similar to the pain I had when I still had my colon but it’s in a more concentrated spot.

I’m taking painkillers regularly but it’s difficult to get comfy, both during the day and at night. I’m finding ways around this though with cushions and laying on my side instead of my back (which I’ve found causes pain in my stomach as well as near my pouch).

As for food, I’m eating four to five small meals/snack during the day, with the last of these being no later that eight in the evening so as to lessen the risk of issues at night.

Speaking of night time, I was terrified I would have leaks and accidents while I slept but, so far, everything’s been fine. I have a pack of incontinence pants just in case but I’m hoping I won’t ever have to use them.

I am home!

Sorry for the lack of updates the last few days, there hasn’t been much to report. But now, I am home. I have been signed off work for the next four weeks so I’ll have plenty of time to adjust and get used to my new “plumbing”.

So far, everything is going well but it’s early days. Hopefully, things will continue to go smoothly and I’ll have little to no issues with my j-pouch.

Seen the consultant this morning…

I’ve started passing tiny bits of gas the last couple of days, as well as green mucus, which the consultant is quite happy with. I’m being changed to free fluids and my PCA pain button will be reduced over the next day. They recon I will be home within forty-eight hours but, knowing my stomach, it’ll likely be longer.

I’m trying to stay positive though, so I’ll give myself until Wednesday next week. That’s when I think I’ll be well enough to go home. If it’s earlier though, great!

Surgery update.

Everything went as planned on Wednesday. I’ve had my stoma reversed and I now have a lovely line of staples running across one side of my tummy.

I’m nil-by-mouth because there is still a lot of gas trapped in my gut but once that passes, I’ll be able to start eating a soft diet. (I’m so bloated, I look like I’m three months pregnant).

Other than that, I’m moving around quite independently and, although I get tired quickly, I’m staying awake for longer now.

It’s the weekend now so I’m going to rest and go for short walks up and down the ward corridor so by Monday, hopefully, I’ll start paying some of that gas.