I’ll keep this brief as I am very brain foggy.
Yesterday I had my EUA (endoscopy under anaesthetic). From the results, my surgeon determined I would indeed need stoma surgery. He wanted to wait until this morning (Saturday) but because I was in so much pain (I’m quite sure I asked them to knock me out at one point), he said it would be cruel to leave me like that and took me straight back into theatre.
I’m in intensive care at the moment with a cocktail of painkillers being pumped into me.
On Saturday, I had what’s called an EUA, or endoscopy under anaesthetic, in order to see what was going on in my jpouch. It showed the entrance was narrowed by a stricture and there was some liquid in it so they inserted a drain. The doctor who performed it tried to stretch the stricture with his finger (I didn’t know this until later).
Afterwards, all seemed fine for a bit until I started getting pains in my lower abdomen and near my rectum/pelvic floor. As it turns out, when try to stretch the stricture, the doctor had accidentally created a hole in my pouch and there is now an infection in the cavity behind it (to say my surgeon was not happy about this would be an understatement). “Fortunately”, the drain had gone through the hole as well and was trying to drain the waste that has leaked through. It was painful but they couldn’t do anything until the next day (Tuesday) at the earliest.
The plan, as far as I knew it, was to have an EUA so my surgeon could assess the damage. Once this was done I’d then have surgery to have a permanent stoma put in. I was told that I’d have the EUA this morning (Wednesday) and then the stoma surgery this afternoon.
That hasn’t happened. It turns out there was some miscommunication between my surgeon and another Dr. What is actually happening is my surgeon is performing the EAU this afternoon and I am last on his list. Fine. The stoma surgery will be scheduled for later this week, most likely.
What was said would happen but hasn’t (by the other Dr) is that I was first on the list to have the EUA and that it “didn’t matter” if the drain had fallen out this morning (which it did but hasn’t caused any issues). There was no mention of when the stoma surgery would be, only that they might not even have to do it. (My surgeon has already said going back to a stoma would be what’s best for me at this point).
I am struggling now as I’ve done nothing but lay around and wait for someone to take me for a test or scan or tell me some results. It’s tiring and I’m fed up. I want this fixed so I can go home and continue living.
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.
I’ve got my follow-up flexisigmoidoscopy booked for about two weeks time. Seeing as the biopsies they took when I was in hospital showed nothing, I’m doubting new biopsies will show much either. However, this scope should show if the inflammation has gone/reduced from my small bowel.
I’m still taking the modulen daily – and will be at least until I have my scope – but this weekend I decided to have a break; I’m only having half my usual amount (200g), with yogurts and soup making up the remaining calories (sort of). I’ve found I can handle small amounts of soft food (mashed potato, banana, ect) as well as some solid foods (I’ve had a few prawn crackers and some mozzarella sticks with no side effects). I hope this means I’m getting better and that I can start to introduce solids more regularly soon.
In other news, as some of you may know, I have pet rats. Unfortunately, one of my older girls had to be put to sleep last night as she was really poorly. Her sister is pretty upset with us so we’re giving her some space but keeping an eye one her at the same time.
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.
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.
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.
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.
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.
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.
What Can I Eat 