Tag: inflammatory bowel disease

Surgery update.

Everything went as planned on Wednesday. I’ve had my stoma reversed and I now have a lovely line of staples running across one side of my tummy.

I’m nil-by-mouth because there is still a lot of gas trapped in my gut but once that passes, I’ll be able to start eating a soft diet. (I’m so bloated, I look like I’m three months pregnant).

Other than that, I’m moving around quite independently and, although I get tired quickly, I’m staying awake for longer now.

It’s the weekend now so I’m going to rest and go for short walks up and down the ward corridor so by Monday, hopefully, I’ll start paying some of that gas.

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.

A bit of background

I was diagnosed with Ulcerative Colitis (UC), a form of Inflammatory Bowel Disease, in April 2016. I suffered with bloody and painful stools, and abdominal pains. I was put on a number of different medications, including steroids, but nothing worked for more than a few weeks. I was in and out of hospital for about a year before I caught a C-diff infection which, combined with my UC, caused me to need my colon (large intestine) removed and an end-ileostomy formed. An ileostomy is when the end/part of the intestines is pulled through a surgical hole in the abdomen and sewn in place, forming what’s called a stoma. An adhesive bag is then placed over the stoma to collect food waste. I had this for just over a year before opting for a reversal. This meant having two more surgeries; the first to create a j-pouch – a interior “quasi-colon” made using part of the small intestine – and a temporary loop ileostomy while the pouch healed. The third and final surgery is to take down the ileostomy so that the j-pouch is fully functioning and I can go to the bathroom “normally”.

As of writing this, I am still waiting to have the stoma take-down surgery but that’s not too far away.

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.