I went to the gym last night for the first time in two weeks! I only spent about half an hour there though because it’s so warm at the moment and I was worried my bag might come unstuck mid-workout. It was a good session but I’m so tired from it; it’s surprising what two weeks off can do to your fitness. Anyway, I plan to keep going every week up until my surgery then I’ll be taking a couple of months off. I’m considering going just to walk on the treadmill once I feel up to it but I don’t intend to do anything more than that between surgeries. I’m hoping this will help my recovery whilst keeping myself somewhat active without over doing it.

Travelling with a stoma +reversal update

Sorry I haven’t posted much this week, we’ve been so busy I just haven’t had a chance to do any updates. So, we went to Holland for a week. We stayed with friends and went to a LAN party Friday through to Sunday which was held in a school (so plenty of space, power outlets and free hot drinks from the machines). We had a really great time there and I can’t wait to go back again. We went to Amsterdam to visit the Rijks Museum and the Anne Frank House which were both very interesting and moving. I had a fantastic time over there and was really sad to leave last night but I guess reality ensued. Anyway, as for how my stoma behaved, it was fine. Even when I ate a few things I probably shouldn’t have (onions ect), it didn’t cause any issues. Going through security on the way out there was easy (no questions, no pat down ect) and going through on the way back was fine too despite having a pat down (which they do for everyone). The Security guard who patted me down was fine when I told her I had an ostomy and said she even had a friend who has one. It’s amazing how common they are, we just don’t notice them on other people. So, now I’m back in the UK for the foreseeable future and I return to work again tomorrow which’ll be fun (Read: not).

In other news, I have a date for my reversal surgery! I’ll have the first one to form the J-pouch in June and, provided it goes well, I’ll have the final one to reversal my stoma completely in August/September time.

I saw my surgeon today and he was pretty positive; he’s put me on the list for reversal and said I should get a date soon, sometime during the summer/autumn.

1 year Stomaversary!

So, today marks 1 year since getting my stoma. It’s had it’s ups and downs, but overall it’s been the best year I’ve had for a long time.

The biggest thing I’ve had to get used to is eating like a normal person again; although I am currently keeping to a (mostly) gluten-free and reduced dairy diet, I’m still learning what foods are good and what ones are still bad. Most of the bad ones consist of foods I couldn’t eat before (such as certain fruits and vegetables) but there are some new ones (like nuts and popcorn). Still, it beats living on instant noodles, plain crisps and gluten-free cereal.

Getting back to a normal sleep pattern hasn’t been hard at all; it seems I wasn’t sleeping anywhere near enough before so I’m able to sleep fine now. Other things like doing housework and being able to go out for the day are still a little bit difficult due to a lack of energy, but I have less concern about bathroom location now whenever I leave my flat.

Another thing I’ve had some trouble with is exercise; I was warned not to over stretch or lift anything heavier than a kettle for the first 6 weeks. Because I was practically bound to my room at the hospital for three weeks, my leg muscles had deteriorated quite a bit so I had to work up to walking longer distances slowly. This also meant I couldn’t exercise much at all. After a few months, my legs were almost back to their original size and strength and my stoma nurse said I was ready to start some gentle stomach exercises. She gave me a booklet that outlined ways to strengthen my abdominal muscles in order to avoid hernias. I had a bit of a false start due to some liver problems, but I started going to the gym not too long ago and it feels good to be able to get back into a routine again.

As for what to expect in the future, I’m seeing my surgeon tomorrow morning and, seeing as the issue with my liver isn’t what they thought it was, it looks like reversal is a strong possibility. I hope to get that ball rolling and have a date for the next surgery soon. For now, I’m happy to keep baggie for as long as I need to.

I’ve got my next consultation with my surgeon in April 2018. I’m not sure how I feel about that; I was anxious about starting the reversal process at first, but now I just want to get it over with. I’m hoping that whatever is wrong with my liver will be easily treatable and not interfere with my surgeries.

I won’t go into detail about it but I decided to start counselling. I had my first initial appointment today and I should hear about further appointments with a councillor within the next week.

Proper update

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.

Well, that didn’t last long. I’m back in the hospital, admitted through A&E around three this morning, with severe abdominal cramps and vomiting. They’ve given me morphine for the pain and an anti-sickness that seems to be working at the moment. I’m nill by mouth at the moment because they’ve put me in the ASU (acute surgical unit) and they’re not sure what’s causing the pain. I’m just waiting for the doctor to come see me.

It might be too soon to really tell, but I tried cucumber (without the skin) this afternoon and, finger crossed, I haven’t had any negative side effects.

I’ve been told to only have very soft, skinless/seedless fruit and veg for now as it digests easier in the small intestine. I haven’t been eating much fruit or veg since my surgery but I am starting to reintroduce them one by one into my diet again.

So far, bananas, potatoes and strawberries are on the ok list and I hope to add cucumber to that list too.

Surgery #2

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.