I haven’t had much to report recently; I’m still waiting on a date for my surgery, and I’ve been feeling pretty good since going back to fulltime work. I’ve shifted my hours a bit so my work days are broken up so I don’t burn myself out too quickly. Other than being quite tired after work, I’m doing ok.

Saw my surgeon this morning. My contrast enema showed my jpouch should work fine, no signs of stricture or other issues so I’m being put on the list to have my stoma take-down as soon as possible. I asked for it to not be before the end of October because I’m going to watch Wicked in the theatre then and really don’t want to miss it, so he said he’ll try for November. Finger Crossed!

Returning to work…

I went back to work last week but on a phased return basis meaning I’d work from ten in the morning until two in the afternoon on Tuesday, Wednesday, Friday and Saturday (with Thursday as a day off) for at least the first week. I thought that went really well last week so I decided to increase my hours abd stayed until four yesterday. Despite it being really quiet at work, the time went somewhat fast and I felt fine afterwards. Until I got home that is. Then it hit me just how tired I actually was. I had to miss D&d because there was no way I’d be able to consentrate for that long, and ending up spending the evening in bed watching Scrubs. As a result I only worked until two today. I’ve got tomorrow off but I can’t sleep in because I’ve got an appointment to see my surgeon in the morning. I’m going to go back to working six hours on Friday and Saturday but I won’t be increasing my hours any further for at least another two weeks; I don’t want to risk burning myself out before I’ve even get back up to fulltime hours.

Recovery update

It’s been two months since surgery so I thought I’d do a little update.

I haven’t had a partial blockage in a while now and I feel my appetite has returned so I’m eating normal food now in slightly smaller portions with the occasional snack in between meals. I’ve found a normal diet (including gluten and milk) is working fine for me at the moment but I suspect I’ll have to reduce my gluten intact later once I’ve recovered a bit more and my eating habits return to normal. My snacks are usually either crackers, PomBear crisps (I find crisps like Walkers don’t digest too well) or biscuits/cookies. My main meals mostly consist of chicken (breaded or in a non-spicy sauce) with some form of potato (chips, wedges, mash ect.) I can’t eat beans so I’ll sometimes have tinned spaghetti instead. Noodles and pasta are ok for me in moderation but I don’t cook a lot of it as it’s only me who’ll eat it. As for sweet stuff, pretty much anything is fair game so long as it doesn’t have any nuts/seeds or dried fruits in it. I sometimes binge on cookies or chocolate.

As for my walking, I’m able to walk just fine when I’m inside my own flat or at my parents as I know there are plenty of places to sit down if I need to. However, when I’m outside, I’m a bit slower and a lot more cautious of the people around me (I don’t fancy an accidental elbow to the stoma). I’ve been using my walking stick for the last month or so but I don’t feel I need it as much anymore. I’m sort in a grey area of needing it and not needing it so I’m trying to go out with it in my bag in case I need it later, rather than using it straight off the bat.

In regard to my stoma, it’s been better since using the barrier rings my stoma nurse gave me. The skin looks and feel so much better and the bags feel like they could last an extra day if I needed them to which is ideal.

Lastly, I’ve got an appointment to see my surgeon about closing off the blob later next month so if all goes well, I’ll be stoma-free by the New Year.

Surgery school done!

So, I survived surgery school. For those of you who don’t know, it’s an optional, pre-surgery casual group meeting with several nurses and hospital staff who go through what to expect after surgery and how best to prepare for surgery. I knew most if what they had to say but it was nice to go anyway because they gave out leaflets on ways to be more active along with some (not 100% relevant) dietary advice. I spoke to the nurse during the break and she said she’ll get the dietitian to give me a call later this week. Overall, this morning has been pretty good. Now, it’s off to work for the afternoon.

My supplies for changing baggie: a new bag (obviously), scissors to cut the hole to the right size (28mm), clean dry wipes (devided into three to make them last longer), a mini bin bag to put the old bag and used dry wipes in, a small pot for warm water (used for cleaning the stoma and the skin around it), adhesive removal spray and barrier cream (to help with itchiness under the adhesive).

Travelling with a stoma

So, obviously we made it through security no problem. I was quite lucky to not be asked any questions about my bag or supplies at either end of our journey (I have heard several ostomates have had pat-downs as well as having to show their bags to the security guards when travelling). The guards at the UK end waved me through the scanner and that was that. When we landed, we didn’t even see the guards because everything is done with machines.

The flight itself, although a little turbulent to begin with, went pretty well. There was no blowing up of my bag, no excessive amount of gas and no having to use the tiny planes tiny toilet. Admittedly, our flight was only about an hour so I imagine I would have needed to use the bathroom on a longer flight.

As for the last couple of days, they have been great! Today (Sunday) is the third and last day of the LAN party and we are just waiting for dinner to arrive then we’ll be packing up in a few hours. It’s been an amazing three days of just games, YouTube and more games. I have met some amazing people too and am really looking forward to the next LAN.

Tomorrow is a chill day of not doing a lot but Tuesday we are visiting Amsterdam. I’ve never been so I’ll be taking a lot of photos. We have a rough idea of what we are doing whilst we are there so it should be a fun-filled day. We fly back to the UK on Wednesday evening.

Travelling with a stoma… again

So, I’m going to be flying to Holland in just under two weeks. I haven’t flown since having my ostomy so I made sure to read plenty of articles about it. Pretty much all of them are positive, saying that it shouldn’t be any different from flying without an ostomy. One recommended that, once I get to security, I tell the officers that I have a bag just in case. Has anyone else travelled via plane with an ostomy? Did it cause any issues at security?

Another thing someone said they do is split their supplies/medication between their main and hand luggage so if one gets lost, they still have some of their medical supplies. The issue I have with this is that your main luggage is more at risk of getting misplaced than your hand luggage. When travelling, I tend to be quite careful to not leave anything behind or lose sight of my bag so I prefer to travel with all my supplies in my hand luggage. I do realise, however, that this doesn’t work for everyone, especially if you have a lot to take with you.

One more thing I wanted to share was that some airlines apparently offer extra hand luggage allowance for medical supplies which I think is worth checking out. I’ll let you all know how that goes.

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.