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.

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.

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.

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!

Ostomy problems

When you empty your bag to discover the contents is bright red.

Panic for five seconds.

Then remember you had red velvet cupcakes earlier that day.

Worst night in a long time

So, yesterday evening was spent with my partners Oma (she’s German) celebrating her birthday and we had Chinese, which I’m usually fine with. However, shortly after eating it, I found my output had beco. Every watery and the skin under the adhesive was super itchy. I tried to ignore it but by the time I got home a few hours later, it had become painful. I decided to change my bag, which would be the second time that day, and go to bed. That didn’t work; it was still painful and itchy and I couldn’t sleep. My solution was eat half a packet of mini marshmallows and to take a codiene tablet. This has worked so far but I need to make sure I drink plenty today to avoid a blockage.

I’ve been advised by both my GP and my stoma nurse to increase my loperamide intake from four single doses to four double doses per day (I’m not sure on the exact measurements). I started doing that yesterday lunch time and I’m assuming it just needs to get into my system but it seems to be taking its sweet time.

I’m very frustrated and tired but I’m trying to be patient and stay positive. My new blob is not making either easy. I hope everyone is having a good and safe week so far. Rant over.