I went back to the gym today! It’s been over a year since I last worked out so I’m quite proud of myself for being able to last a full hour. I focused mostly on gentle stomach exercises and made sure to wear my support belt the whole time. It felt good so I’m looking good forward to going again next week.
I’ve just seen my GI and he has said my liver biopsy hasn’t shown any signs of Primary Sclerosing Colangitis (yay!). It hasn’t shown anything else either so what’s caused my liver to double in size and be painful is still a mystery, but I’m hoping to get more answers when I see the liver consultant later this month. This hopefully means that my reversal can happen.
I am very relieved that it’s not PSC, because my reversal is looking more possible, and hoping it’s just a viral infection or something easily treatable. Fingers crossed!
“Stama facts!
An Ileostomy is when the small intestine is diverted through a surgical opening in the abdominal wall.“
I finally got around to making more of these.
Started using OstoGuard barrier cream last week, at my stoma nurse’s recommendation, to help with the itchiness I occasionally get under the adhesive of my bag. I’ve never used anything like this before but I’m glad I have it a try because it’s worked really well so far.
One thing I’ve found since having my ostomy is that getting dressed isn’t as easy anymore; I have to be mindful of where my clothes sit over my bag/stoma.
I’ve found the biggest issue is trousers; I have several pairs of work trousers that I can’t wear any more due to them sitting too low to be comfortable over my bag but too high to sit under it. To solve this, I’ve turned to high-waisted trousers and skirts with elasticated waists. As for casual wear, I have found that most of my jeans will sit under my bag quite comfortably, except one pair that rubs the bottom of the adhesive just enough to worry me. It doesn’t create a hole but the last few times I’ve worn them I’ve noticed the edge of the flange has frayed slightly.
There’s also making sure that tops and dresses aren’t too tight over my bag as well but that’s why I try everything on before buying it.
Does anyone else have similar issues and if so, what have you found works for you?
“Stoma Facts!
Did you know…? There are three types Stoma; Ileostomy, Colostomy & Urostomy.“
Ok, so let explained what happened yesterday; after I got to the hospital, I had bloods taken and a cannula fitted before being moved into the AAU (Acute Assessment Unit) where I experienced a major flare of pain in my stomach. They gave me oral morphine (which tasted like fruity vodka) but it didn’t seem to do a lot so a little bit later a nurse came over with two syringes of IV morphine which she gave me little by little. This helped to numb the pain enough for it to be bearable. They then took me for both a chest and abdominal x-ray before taking me up to ASU (Acute Surgical Unit). By this time, the pain had gone down enough for me to have a shower and change my bag but I was nil-by-mouth in case they needed to do surgery for any reason. I did notice my stoma was protruding more than normal but it seems to have gone back to normal so I’m putting that down to muscle strain.
Eventually, the doctors came round and I was seem a whole three times! (And on a Sunday too) They checked how my stomach felt and decided that I needed an ultrasound. They booked it for this morning but said I could go home provided I wasn’t in too much pain. Thankfully, the pain went away with the morphine and I’ve been given dihydrocodeine to take home.
The ultrasound was to check it was gall stones, which they’d remove if needed. And if it wasn’t my gall bladder, then they’d check for inflammation in my stomach. As it turns out, they actually couldn’t see my gall bladder because my liver has somehow become twice the size it’s meant to be, which would explain the pain. The consulting surgeon I saw after the ultrasound said he would refer me to a liver specialist but to take it easy in the meantime.
My boss has been amazingly understanding, as usual, so I’m taking the rest of today off work to rest my sore muscles.
I’m hoping this’ll be easily fixed and not affect my stoma or interfere with future surgeries.
So, I saw my new surgeon last Thursday and I think it went quite well. He explained everything that has been done already and what happens to form a J-pouch. He also reassured me that I can go back to an ostomy if the j-pouch doesn’t work out.
Apparently, they usually wait until six months after the initial surgery to do the next one but I said I’d rather wait until next year. I have another appointment with him again in December so I’ve got plenty of time to decided when I want to go for my next surgery.
I was thinking April 2018 but after speaking with my boss (who has a similar condition but hasn’t got a diagnosis yet), I think I’d rather do it earlier. She recommended January because the weather in April will be warmer which could effect my BM; the last thing I need straight after surgery would be complications because of the heat. I’m going to take a little more time to decided but I agree that earlier would be better. I found that over winter last year I could (sort of) control my UC symptoms a little better with heat pads, despite the meds I was on at the time not actually working without the assistance of pred.
Also, if I go ahead in January, hopefully all my surgeries will be over by April/May. My surgeon said they usually wait at least three months before doing the final surgery that’ll remove the blob.
It feels a little strange to think that I would have gone almost a year exactly from diagnosis to surgery and then another year from first surgery to final surgery. I’m a little excited; part of me wants to say “no, don’t wait! Get it over with!” However, I don’t want to be in hospital over Christmas so I think it’s worth me waiting until the new year.
This Saturday will mark four months since my surgery. I am pleased to report that I am feeling much closer to “normal”-me than I have all year, despite thinking that I never would, at first. I’m able to eat a lot more than I could before with few exceptions, sleeping has become much easier, and although I do get the occasional pain about the middle, there are times when I can forget I have baggie. I do find that bending and stretching can be a bit uncomfortable at times, and I can’t run much, but I am back to my usual walking speed (so, no longer at escort-mission speed). I know I have a ways to go as I am still adjusting to living with baggie, but I don’t feel quite as overwhelmed anymore.
Saw my GI this afternoon. He wants to check my magnesium, potassium and sodium levels but other than that, he’s quite happy with how I’m doing. Unfortunately, the blood test lab is closed now so I’ll have to go back to the hospital tomorrow to have that done. Hopefully, my levels will come back fine.
What Can I Eat 