Recovery update!

I managed to go out twice in the last five days! I’m back to using my walking stick but I don’t think I’ll be needing it for as long this time. I can walk faster and for longer now verses last year, but I still need the extra support when going out for a long time. The stick also acts as a warning to others that I can’t move that quickly and they may need to be careful when moving around me. It doesn’t always work though as I have had a couple of people (noticeably older people) who have felt it would be fine to just knock me with their bags. Luckily, I was stationary and with someone else when this happened but still.

(Side note: It’s odd but I have found that the people who are the most considerate and take note of my stick are around the same age as me (30) or younger. I don’t mean this as a slight against older generations, it’s just something I’ve noticed.)

Anyway, in terms of eating, I think I’ve been over-estimating my guts capacity because I have had stomach cramps on and off for the last few days. It was worse yesterday (Tuesday) but it seems to have gone for now. I’m finding that the cramps are most severe if I eat too much stodgy food (like bread, batter, pastry ect) and this makes me feel sick. I’m going to try and eat four small meals a day instead of two big ones (I don’t eat breakfast). For today though, I’m only having snacks every now and then because my gut is still sore.

Day 17

I slept a lot better last night which I think has helped me feel a lot better. They’ve moved me onto a light solid food diet so I’m eating low residue but in small amounts. I’m still on TPN for at least the weekend, and I’m having Forticreme yoghurt in the morning and evening.

The doctors were a bit worried because my blood pressure dropped this morning but it was because I wasn’t drinking enough. I have been drinking plenty this afternoon so they aren’t worried anymore.

I’m feeling so much better than I was last week so I’m hoping this means I can go home early next week. Fingers still crossed!

Day 8

I’m feeling a lot better today compared to the kat couple of days. I was able to sleep again last night and I’ve had very little pain. I’ve had soup and jelly today for lunch and so far so good. I’m going to try something a bit more solid tonight in the form of mashed potato but I don’t want anything much more today just in case. I’ll try some cereal in the morning, though, I think.

Day 4

I’ve seen my doctor today and I am now drain, cathatar and PCA free! I still have a cannula but they said they’ll remove that as well later.

I am a lot more mobile now that I’m not attached to a load of machines so I feel a lot better than I did yesterday. It still takes a lot of energy to get to the bathroom – which is just across the corridor from my bay – but I am recovering faster from each excursion.

I’m still on a liquid diet, probably until tomorrow, but I’m at least allowed clouded liquids instead of just clear.

Maybe I’ll get to go home soon.

Day 1 update

Today has been interesting, I didn’t really sleep that well last night so I’ve been having little catnaps throughout the day. My pain was fine this morning but it got worse after I got out of bed, and I was sick on my way back from the bathroom. I’ve been using my PCA a lot more now but the nurse said it’s normal given it’s so early after surgery. My brainfog has returned but I think that’s due to being so tired.

On the positive side, I’m not nil-by-mouth! I’m not allowed solid foods yet but I’m on free liquids which includes jelly and ice cream. Also, I’m able to move. I’m very slow but I can get to my feet with help and move around a bit when sat or laid down on my own.

Not going to lie, today has been hard and all I’ve wanted to do is curl up into a ball and sleep. However, the nurses have been great so I can’t complain.

Sorry for the lack of posts, there’s been a lot going on recently at work and I have been so tired that I just haven’t had the energy to do much. There isn’t a lot to update on either but I thought, as I’ve got a day off, I’d do a little post just to let everyone know I haven’t fallen off the face of the earth.

Anyway, it’s just over a week until my surgery and I’m starting to feel a little nervous. I guess that’s normal given that it’s a pretty major surgery and they’re not 100% sure of the outcome given that if the blood vessels won’t reach, they can’t form a working j-pouch. I’m sure everything will be fine; I’m going to the best hospital for IBD/gastro-related treatments in the south of England so I know I’ll be in good hands. I’ll be sure to post closer to the time as this is essentially my diary, only it’s public.

How’s everyone else doing? Fell free to PM me if you want to talk, I may not reply right away but I will answer any messages you send me. Have a good and safe Monday, everyone!

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.

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.