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.
On Saturday, I had what’s called an EUA, or endoscopy under anaesthetic, in order to see what was going on in my jpouch. It showed the entrance was narrowed by a stricture and there was some liquid in it so they inserted a drain. The doctor who performed it tried to stretch the stricture with his finger (I didn’t know this until later).
Afterwards, all seemed fine for a bit until I started getting pains in my lower abdomen and near my rectum/pelvic floor. As it turns out, when try to stretch the stricture, the doctor had accidentally created a hole in my pouch and there is now an infection in the cavity behind it (to say my surgeon was not happy about this would be an understatement). “Fortunately”, the drain had gone through the hole as well and was trying to drain the waste that has leaked through. It was painful but they couldn’t do anything until the next day (Tuesday) at the earliest.
The plan, as far as I knew it, was to have an EUA so my surgeon could assess the damage. Once this was done I’d then have surgery to have a permanent stoma put in. I was told that I’d have the EUA this morning (Wednesday) and then the stoma surgery this afternoon.
That hasn’t happened. It turns out there was some miscommunication between my surgeon and another Dr. What is actually happening is my surgeon is performing the EAU this afternoon and I am last on his list. Fine. The stoma surgery will be scheduled for later this week, most likely.
What was said would happen but hasn’t (by the other Dr) is that I was first on the list to have the EUA and that it “didn’t matter” if the drain had fallen out this morning (which it did but hasn’t caused any issues). There was no mention of when the stoma surgery would be, only that they might not even have to do it. (My surgeon has already said going back to a stoma would be what’s best for me at this point).
I am struggling now as I’ve done nothing but lay around and wait for someone to take me for a test or scan or tell me some results. It’s tiring and I’m fed up. I want this fixed so I can go home and continue living.
I returned to work today. I’m starting slightly later but otherwise doing normal hours for the time being. My hours will likely go back to full time next week but it’s not long until I finish there and start working at the local hospital. I’m a little nervous about starting a new job because of my UC and recent surgery but at the same time really looking forward to it. (I’m going to do a post about starting a new job with chronic illness later).
Anyway, back to today; today went really well. We weren’t too busy so I was able to take it easy. I was able to stand longer than I thought I would so that’s a bonus, and it felt good to be getting back into the swing of things. I’m very tired now but not more than is normal for me.
As for how my general recovery is going, it’s going pretty well. My stomach is still swollen, particularly around my wound, but the wound is looking more like a scar and less like I’ve just had surgery. I don’t need to keep a dressing on it now which is great because I have a slight allergy to the adhesive. The skin where my ostomy bag used to sit is super itchy at times but e45 cream works to cool it down.
Sorry for the lack of updates the last few days, there hasn’t been much to report. But now, I am home. I have been signed off work for the next four weeks so I’ll have plenty of time to adjust and get used to my new “plumbing”.
So far, everything is going well but it’s early days. Hopefully, things will continue to go smoothly and I’ll have little to no issues with my j-pouch.
I got a call from the hospital this afternoon, my surgeon had a cancellation so they offered it to me. The only issue I have is that it’s for next week so very little time to prepare mentally. I know I’ve been a little impatient about getting my stoma removed but now that it’s less than two weeks away, I’m a bit nervous. Not because it’s surgery though, it’s more what comes after; the pooping “normally” and what that entails. I’m sure I’ll be fine but I guess we’ll see.
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!
Just had the bike test in preparation for my surgery in June. It was harder than I was expecting but they don’t make you do more than you are able to. I’m currently sat in waiting for “surgery school” to start. Not really sure what to expect but I’m hopinh it’ll be informative.
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.
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.