Category: Uncategorized

Ostomy solutions…?

(minor TMI warning)

I’ve been having watery and acidic output for a while now. I asked my GP and stoma nurses what I could do about it as I was already taking loperamide twice a day. My nurse suggested doubling the dose as well as the number of time I was taking it and my GP gave me a prescription for codeine due to its constipation side effect. I started taking codeine in the morning and evening before bed and two loperamide before lunch and before dinner every day. This seemed to work for a while but I’ve noticed it’s not working as well as it used to.

I then decided to try and tackle this with diet as well by snacking on marshmallows every now and then as well as continuing with a low fibre diet. This also doesn’t seem to be working as the marshmallows only seem to have any effect when eaten in excess (ie. half a bag or more of big marshmallows).

Now, I read an article recently that was about which foods helped for someone with a colon and who was experiencing IBS symptoms. Among other things, it suggested porridge/oatmeal so I gave it a try. It sort of worked, as in the oats thickened my output for about a day. This is a huge improvement so I’m going to keep having the porridge daily, if I can (as I’m sure I’ve already mentioned, I don’t usually have breakfast). I’m also going to continue with the meds and marshmallows so, hopefully, with all of this combined, I’ll have a less watery output. We’ll see.

I’ve got a date!

I finally have a date for my take down surgery! It’s in the middle of February so I’m not sure if I’ll need to have another pre-assessment but I don’t mind either way.

In other news, I’m being given cholecalciferol again to boost my vitamin D which my GI said is very low. He also said my urine sodium was low, which suggest some dehydration, so I’ve been referred to a dietitian who has prescribed a high sodium drink which she’s sending me the recipe for, along with some extra information on dehydration.

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!