Just a little update

Sorry for the radio silence recently, I’ve just not had anything to report. I’m still waiting on a date for my take-down, and even though I’m meant to be seeing my GI Tuesday afternoon, because of work, I need to move the appointment. It kind of feels like they want to wait until after Christmas but I would prefer it to be over as soon as possible. I’m getting frustrated with it and my bag and stoma cause a bit of anxiety because I’m having to wait.

I’m back to full-time now at work which has been going fine. My new manager (who started about two weeks before I went off for surgery in June) seems to e getting the hang of how our team works and our two newest colleagues are doing well which has made the atmosphere a lot less stressful and bitchy. This has helped me get back into the swing of things but I think because I know I’m going to be off again soon, I don’t want to get too comfortable. Despite having worked there for over four years now, I still feel like I need to prove my abilities to everyone because I have had so much time off. And I still feel this sometimes even after my manager explained how much he valued me as a member of the team. I’m sure it’ll all settle down once I’ve had my take down and have returned to work again, I just can’t help but feel a little inferior sometimes.

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.

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.

An interesting week

I’ve had an interesting week; Tuesday night through to yesterday (Wednesday) evening, I experienced horrible stomach cramps and my stoma stopped working. I called my GP for a phone consult and she did a home visit (because she didn’t want me to walk upto the surgery) to listen to my gut and check I wasn’t distended. Typically, my stoma started working about half an hour before she arrived at my flat, but she said my gut didn’t sound blocked. It didn’t, however, sound quite right to her either so she said to drink plenty and to only eat when I felt like it. I didn’t have much of an appetite yesterday but it seems whatever was causing the cramps has passed because the blobs been active all day today and I’ve been eating little meals throughout the day too. Doctor said to call if the cramps start again so I’ll need to keep an eye on things.

Other than that, I feel OK in myself. I’m sleeping a little better and I’m wanting to move around. I’m getting a little restless sitting at home all day everyday so I’m planning on going out for lunch with my mum tomorrow. I just hope the weather is nice and that I can manage the walk.

I spoke to my stoma nurse yesterday and she confirmed that blood from a new stoma is common, but to speak to my GP is the blood is coming from inside my stoma. As the blood seems to have stopped for now, I won’t be calling my GP. However, if it happens again, I will.

The skin directly underneath my stoma was red and sore when I changed my bag yesterday but the barrier cream seems to soothe it a little bit. The annoying thing is, when I saw the nurses on Thursday, my stoma and skin were both fine. I’ve taken a picture of what the skin was like yesterday so when I see them next, I can show them. I’m hoping the skin clears up on its own and that the blood was a one off.

As for the cramps, it seems my eating mini pizzas causes them to get worse. I’m not sure why they do but I think it’s best I avoid pizza for a while. I’ve been using a hot water bottle at night to relax my muscles so I can sleep, but I still need to take painkiller. I’m still taking paracetamol regularly but I’m also taking codeine and buscopan (IBS relief) on occasion.

Recovery update 2

I’ve been home almost a week now and things have been both good and bad; I’ve been able to eat a bit more without feeling sick, I’ve been controlling my pain fairly effectively and I was able to walk a fair bit today with my walking stick.

However, I am still getting a lot of wind passing through my stoma, the skin around him is still a tad bit sore, and today I have experienced what looks like blood in my output. As it turns out, blood in output is quite normal but I did get a bit worried and I did several things to try and get answers.

Firstly, I posted on the No Colon Still Rollin’ Facebook page and the guys there were very supportive, saying it’s normal and not to stress too much about it. Secondly, I spoke to an out of hours doctor (it’s Sunday so my GP and stoma nurse are closed) and she said I could be seen in the emergency clinic. I didn’t really want to do this as I don’t feel this is an emergency and that appointment could be given to someone who really needs it. Also, while I was speaking to her, my amazing partner did a bit of research online and confirmed that it is indeed normal for new stomas to bleed a bit for the first five to six weeks. I am still going to call my stoma nurse tomorrow morning just in case, but this has put my mind at ease so I’m not too worried about it.

Day 26

I’m going home! I’m just waiting for my PICC line to be removed. I’m so happy to finally be going home, I can’t wait to sleep in my own bed.

My stomach cramps have been pretty minimal today so I was able to eat my lunch no problem. I’m just tired now.

They’re giving me some fortijuce to take home with me but no other medication, which is a first.

Positive vibes!