Quick pre-surgery update

The last few days I’ve had a pain just above and/or to the left of my stoma. It feels like a partial blockage but it’s not moving and my stoma is still working. I find laying down makes the pain a worse but my hot water bottle helps ease it enough to sleep. I’m avoiding food that can cause blockages or are hard to digest and drinking plenty so hopefully it’ll pass.

Well, that’s annoying.

I arrived at the hospital this morning at seven thirty with my partner and mum. We sat in the waiting room of the Surgical Day Unit for about an hour before I was taken through to see the anaesthetist. I then saw my surgeon to sign the consent form and he informs me I am second on the list. Great, so I shouldn’t be waiting too long, right?

Wrong. I was waiting until about half past three when the booking manager comes over and tell me there has been an emergency and they have to cancel my appointment. Frustrating but I completely understand; no one can predict an emergency.

We got home shortly after this and about an hour later I got some good news; they’ve got a new date in two weeks time.

I won’t deny I was annoyed about having to go home without having had my surgery, but I can’t blame the hospital, my surgeon or the emergency patient. This sort of thing happens and getting angry won’t solve anything. I’m just glad I’ve got a new date so soon.

Surgery tomorrow!

So, tomorrow I am having my stoma taken down. It’s odd but I’m not feeling as nervous as I was a few weeks ago; I’m sort of just impatient to have it over and done with now.

A few weeks ago, I was thinking perhaps I’d made a mistake to have the j-pouch but after talking things through with several people, including my partner and people on an IBD forum, I decided I may as well continue with this route instead of backtracking and arranging to have a permanent stoma.

On another note, I have finally sorted my prescription for
colecalciferol tablets. It’s taken almost a month to get it due to several delays but it’s sorted so that’s one less thing to worry about.

What a saga!

So, I had blood and urine tests done in December last year at the hospital which showed I am very low on vitamin D (among other things) as well as dehydrated. My surgeon sent me a letter requested I get a prescription from my GP for Colecalciferol (50,000 units). I had my partner take to letter to the doctor for me because I was working only for it to take over a week to get the prescription! Once I finally did get the prescription, it took a further week to get the medication from the pharmacist because it was a dose they didn’t normally carry and deliveries were delayed due to snow in the area.

I got the meds eventually only to realise they were huge capsules (I thought they’d be smaller, to be honest) that I knew I would have difficulty digesting with my temperamental stoma. I called the doctor and asked if it would be ok for me to break the capsules and empty the power into yoghurt, like I had done before with Lopermide. She said she wasn’t sure and to ask the pharmacist, which I did the next day. Unfortunately, because these are loading doses, the pharmacist said she didn’t think it would be a good idea to break them in case it altered the absorption of the vitamin. She advised I get the meds in tablet form instead which, thankfully, my GP had already done. I get it sent to my local pharmacy and nope! They can’t get them. So, I get my partner to collect the prescription so I can take it to a different pharmacy to see if they can order it instead.

The request letter was made by my surgeon mid-January. It’s been a month I still don’t have medication I can take. This wouldn’t normally annoy me but I’m due to have my stoma take down in just over a week and I haven’t been able to do what my surgeon wanted. I’m tempted to just leave it until after my surgery because then, I may be able to take the capsules instead of wasting even more resources (not to mention money) on getting these tablets when I’ve only got a week and a half to go until the stoma is gone. I guess I’ll see what the other pharmacy says about getting the tablets then go from there.

Ask

@thoughtsfromtheam asked,

“Do you mind me asking what surgery you will be having? I had my large intestine taken out in 2015, then had a colostomy while it healed for 6 weeks, then had it taken down. Is that similar to what you are having done. I have a J-Pouch now.”

Firstly, no of course I don’t mind you asking. I am very open about this and am happy to answer questions if I can.

Secondly, yes. I had my colon removed in April 2017 resulting in an end ileostomy. I then had my j-pouch formed with a loop ileostomy in June 2018 and am currently waiting to have that taken down. I hope this was helpful.

Update

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.

And then they cancel…

Ok, so three days ago, I was given a date for my surgery for next week. Yesterday they cancelled. As annoying as this is though, I can’t fault the hospital; cancer patients take priority and my slot was needed so I’m not that annoyed, not really. I don’t know how long it’ll now be until I have another date but at least this way I’ll have more time to get used to the idea of impending surgery.

I have a date for surgery!

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.

End of year update (Minor TMI warning)

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!

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.