I went to a Crohn’s & Colitis UK coffee morning today with my mum. It was good to meet new people, we talked a lot but there’s never enough time to speak to everyone. I hope to go to the next one near me though. I met someone who has had a jpouch for around ten years now, and I spoke to someone who came with their mum (like me) and who both have Crohn’s. A couple of them were also at the IBD open day last weekend too. I’ve always thought that these meet-ups are a good idea, they give you somewhere to talk freely and feel safe, as well as being part of a community that understands and doesn’t judge because they’ve been there. I know they’re not for everyone but I enjoy it.
In other news, I saw my surgeon last week and he’s very happy with how I’m doing. He said he doesn’t want to do anything now for at least another year, which is fine by me (two surgeries is more than enough for this year, thank you very much). He said I’ve got three options though; 1) I can have my stoma closed and try the jpouch again, 2) I can have my jpouch & rectum removed, a permanent end ileostomy formed and have a barbie-butt, or, 3) I can stay as I am with jpouch & rectum intact and loop-ileostomy. I am quite content to stay as I am for now, but eventually, I will want to go for option 2; permanent stoma and barbie-butt. I don’t want to go back to the jpouch because not only is it ulcerated, but I still have the perforation near the entrance, both of which make me not want to risk it failing again and having to have yet another surgery. I could stay as I am indefinitely but I think I’ll always feel like it’s not finished and I just want this to be sorted once and for all.
So, that’s it for now. Work is going well and I feel able to do more things and for longer. My appetite has returned with avengence so I’m eating like a horse at the moment. My weight is very slowly increasing so all good from where I’m sitting.
I went to an IBD information open day today at my local hospital. There were lots of resources for patients as well as their friends and family, and the talks covered things like exercise, research, diet and the hospital’s IBD helpline. Even though I know a lot about my disease already, I still found it informative and interesting. There wasn’t much time for networking or socialising but it was still good to be there among those who suffer as well and those who are helping make it bearable.
Next week, I’m going to a Crohn’s & Colitis UK coffee morning meet up. I haven’t been to one for a while so I’m looking forward to seeing how everyone is doing. Although I don’t feel I “know” any of the regulars at the meet-ups, I still feel some sort of connection because we have this disease in common.
As for how I am doing, I feel my recovery is going well. I went back to work three weeks ago and it’s going well so far; I’ve a gradual return, with my first week consisting of one and a half weeks because I had a week of annual leave straight after. The second week was two full days but they were easy as it was quiet and there wasn’t as much to do. This last week I worked four days with a day off in the middle to give me time to rest. I have found getting back into it easier than I thought and there are only a couple of minor adjustments I need at the moment. These adjustments are mostly regarding my ability to aid a disabled patient, specifically mobility aid users, as I can’t push a wheelchair nor support another person due to my stomach muscles still healing. This is to protect both me as well as the patient as if I am unable to support someone and they fall, I can’t help them back up again. It’s frustrating because I hate how I am not able to help my patients the way I should. Still, this is only temporary for me and I know eventually I will get better. I am for the forseeable future going to keep wearing my support belt as it helps prevent muscle pains during my work day.
As for my diet, it’s great; consisting of lots of bread, crisps, chicken, potato and chocolate. I’m not underweight but I’m on the lower end for my height so it wouldn’t hurt for me to put some back on. Plus, I’m almost always hungry so snacking is a good thing as far as I’m conscerned. This need to snack does pose a slight issue with my work though as I only get one break during the day and, no, unfortunately I can’t split it due to task assignment. I may have to start stashing snacks in various places so I can eat when it’s quiet.
Anyway, that’s all for now. Hopefully, I’ll have more to share over winter with the cold weathers effects on stoma bags etc, as well as the perils of Christmas dinner. Thank you for reading!
I am travelling by train for the first time since my surgery. The journey involves several changes and I am carrying quite a full backpack. As I am still recovering, I need to be careful that I do not fall or get knocked into as these could both potentially cause muscle strain that can lead to other complications. Although I haven’t needed my walking stick for the last couple of weeks, having returned to work this week has shown me that I am far from fully recovered.
As my work requires me to be on my feet a lot, by mid-afternoon yesterday my stomach muscles were beginning to protest. I thought this ache would go away if I sat down and hugged my hot water bottle when I got home but, unfortunately, the pain persisted throughout the night and I am still quite sore even now.
What does all this have to do with my using my walking stick today? Well, as I am travelling through the busy London underground for part of my journey, it will not only help support me as I walk around, but it will also act as a “red flag” to other commuters that I won’t be able to move out of their way and to be mindful to not jostle me as they rush for the tube.
I have said this before but I think it’s worth repeating because not everyone understands that you can be fine one day and not the next. Recovery is not linear.
I saw my stoma nurse earlier this week and, after a brief chat, we decided I may need a convex bag again but because she was conscerned my stoma might prolapse if the bag was putting too much pressure on my bowel, she offered the Salts 1-piece drainable convex bag to try for a bit as they are meant to be more flexible than other convex bags and so shouldn’t put as much pressure on the bowel.
It’s a tad bit smaller than the Sensura Mio, with a petal shaped baseplate and a drainage end similar to the Dansac drainable, except it has a small tab on the end which makes opening it easier. The material used to cover the bag is soft, water repellent and makes the bag look a lot less clinical. First impressions after wearing it for an afternoon where that it was a good bag that held it’s shape fairly well when full and that didn’t rustle when moving.
I had issues with the opening. I found, although easier to open and clean than the Dansac, it was still messy and would leak a tiny amount of output when closed because it lacked the extra side tabs that the Sensura Mio has.
I thought that maybe I could get used to the opening but then I realised that I was scratching myself raw around the edges of the baseplate – something I was told shouldn’t happen because there is aloe vera in the adhesive to prevent such itchiness. If this was the only issue then I might not have minded too much but because of the opening as well, I’ve decided I prefer the Sensura Mio.
That’s not all to say that the Salts bag isn’t any good. I like it, I really do. It’s just that I can’t get on with the opening (I guess the Sensuro Mio has spoiled me?) and the reaction to the adhesive. I don’t want to deal with the tiny leaks or the itchiness, things that I haven’t had with the Sensura Mio.
I have had other ostomates mention/recommend other bags to me so I may try them in the future but, for now at least, I’m happy with what I’ve got.
So, I am finally going home! I was moved onto low-residue diet last night and have kept down three solid food meals. I feel fine, albeit a bit tired, and am itching to get back to my space.
I don’t know how long I’ll be signed off for but I imagine it’ll be for at least a few weeks.
I’m just waiting for the discharge paperwork and sick note and then I’ll be free to go.
So, I’m on free fluids but I’m having some trouble keeping it down. We think it is linked to my anxiety so I’m having diazopan to help keep me calm.
I managed to have some soup for lunch and I’ve been prescribed Scandy Shakes which are a different type of nutrition drink from Fortisip made with powder mixed in milk. It tastes better than Fortisip and is less thick. I’ve been able to keep all that down so far so fingers crossed the diazopan is helping.
I’ve also had my cathatar and PCA removed and I’m also cannula free, for now. They’ve stopped my antibiotics and are going to see if my inflammatory markers stay down because of they do, that’s means the infection is gone.
The drain is staying in until at least Friday and they said that if need be, I can go home with it. Honestly, if it means I can go home, I’ll go with the drain. Fingers crossed I’ll be home by the weekend.
I’ve had an interesting last couple of weeks. Aside from the aforementioned surgery and subsequent cancellation of said surgery, I found that one of my surgical wounds from June was starting to open. It’s situated under my bag so I didn’t notice it until last week but the very end nearest my stoma had started to open and has formed a tiny hole about 2-3mm long. Not really a problem until I noticed it was bleeding. I called the hospital and they said speak to my GP who, after a phone consult, gave me antibiotics because she said it sounded like I had a minor infection.
I’ve been taking the pills for about a week now and they seem to be working but I’m still a little concerned as the hole hasn’t closed completely. It’s not bleeding anymore though, so I guess that’s a small sign of improvement. Because it’s under my bag, I do wonder if something got into the would from the adhesive or while I was changing my bag and that’s what caused it to open. Because the adhesive sits right on top of the wound, I’ve started covering it with a small plaster so I’ve finally found a use for the tiny round plasters that every pack seems to include but no one ever has a use for. I think that’s helping to keep it clean, at least, so it should heal a little faster.
No news yet on a date for my surgery but I’m hoping it’ll be soon. On an entirely unrelated note, I’m thinking of started my own WhatCanIEat blog website. I’m not sure when or how but I’ll post more if/when it happens.
Just thought I’d do a little update before the new year.
I had my pre-assessment on Christmas Eve but still don’t have a date for the actual surgery. My mum said they usually do surgery within six weeks of pre-assessment because otherwise they have to do it again so I’m really hoping to get a date through soon.
I was hoping for it to be done by Christmas but I realise this time of year can get busy and I didn’t really fancy being in hospital over the winter holiday. This has meant I’ve needed to take some extra measures to make myself comfortable with my stoma; since getting out of hospital back in July, my output has been extra watery and really corrosive, meaning it burns through my convex bag within twelve hours.
I saw my stoma nurse a few months back and she gave me barrier rings which have helped a lot. However, even the rings aren’t enough to stop my output from burning through and damaging the skin around the blob so after speaking to both my GP and my stoma nurse again, I’ve upped my daily intake of Lopermide from a single table twice a day to two tablets twice a day. On top of that, I am also now taking a tablet of dehydrocodeine twice a day. All of this out together has helped to slow my system right down so the output is thicker and it doesn’t burn through anywhere near as quickly as before.
I still get the occasional day where I need to change the bag early because the output is burning the skin but those are few and far between.
Aside all that, I’m doing well, my weight is steady. I haven’t gained much since my surgery but I’m no longer underweight so, bonus! I’m still struggling with eating beg and fruit but I’m taking multivitamins which I feel are helping.
I’ve had blood tests done as well as a urine sample to see if I need another iron infusion before my surgery because I mentioned I’m very tired all the time. I don’t have the results yet but I’m hoping to get them soon.
Anyway, that’s about sums up everything that’s been going on with me recently. Thanks for reading and supporting me this year. I hope everyone has had a great winter holiday and I wish everyone a very happy and safe New Year!
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.
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!