I love Halloween. I love it for the decorations, the costumes, but most of all, I love it for the sweets. Yes, the sweets. (I know, I’m a big kid really). But seriously, there is a practical reason for my eating many sweets; slowing down stoma output without having to take medication.

Recently, I have had fairly loose output which is a bit of a pain because it can mean the bag filling faster than normal. Eating sweets, particularly ones with gelatin in, can help thicken the output and slow it down. Halloween is a great time to stock up because not only is there a much higher supply in shops, but they can be a bit cheaper. Now, obviously, I’m not saying everyone should gourge themselves on sweets (I’m no doctor but I’m pretty sure that’s not good for you, even for ostomates) but this is just how I like to deal with high and loose output. How do you deal with loose output?

So, my plan for tonight are to eat Chinese take away followed by a load of sweets whilst watching Coraline. What are you up to this Halloween?

A week of eating

With the result of my latest scope being that all the ulcers are gone and my gut looks fine, I decided to reduce my modulen to 300g (from 400g) daily and make up the remaining 500~ calories with real food. For the last week, I have been eating small meals of (low residue/low fibre) solid food in the evening. I’ve also had a few small things at lunchtime but not every day. I haven’t had any issues from any of my food but I am aware I need to be mindful of the amount of food I eat at once because I’m quite sure my stomach has shrunk a bit.

I’m seeing my dietitian in a couple of weeks and I’m hoping that she’ll take me off the modulen completely. I’m also seeing another GI (not my usual) at the same time. This GI specialises in Crohn’s so I’m not sure why I’m seeing him as all my results have come back negative for that. My guess is that he might have a better idea of what might have caused the ulcers? I honestly don’t know but I’ll update after I’ve spoken to him.

Scope Day

I had my flexi this morning. Everything looks normal, no ulcers or signs of inflammation. I’m continuing on the modulen for now but I’m hoping to talk to my dietitian soon and start back on solid foods. I’m still having small amounts of soft foods every now and then as I’m not having any symptoms but I don’t want to overdo it so it’s mostly just yogurt or mashed potato.

Biopsy result

I have finally had my biopsy results; it turns out they have no idea what has caused the inflammation in my small bowel. No signs of Crohn’s, (which is great, by the way. One auto-immune disease is enough) but also no signs of infection either. They literally said they have “no clue what has caused the inflammation”. They want to see me again for another flexi in about a month so maybe they’ll find something then.

For now, I’m still on the modulen. I’m awaiting a prescription of it which apparently can take over a week as it’s not something a pharmacy would stock. I’m going to try and have small amounts of soft foods like yoghurt or mashed banana or potato for a few days to see how my gut handles it. So far, it’s been fine with smashed potato, and I had some banana last night which also went through me fine. I’m going to take it slow and only have it in the evening. That way, if my gut does protests, I’ll be at home where I can deal with it and not at work where I can’t.

Considering how quickly I responded to the antibiotics, I didn’t think it was Crohn’s (and nor did my GI or surgeon) but as there is no sign of infection, it does make me wonder what on earth my gut is playing at. It’s very frustrating.

Day 8 on Modulen

It’s been eight days since I started the modulen nutrition drinks and it’s not been easy. I thought I wouldn’t care about not eating sandwiches or pizza and that I wouldn’t mind smelling all these foods that I can’t eat, but I was very much mistaken; the smell of cooking roast dinners or take aways is almost torture sometimes because I want so badly to eat it but I know that if I do, I’ll be back in the hospital again in no time. Because part of my small bowel has narrowed due to inflammation (a stricture), I can’t handle solids moving through my gut at the moment. Other than the modulen, I have been able to handle soup but I don’t want to try anything more substantial without guidance from my dietitian and GI. I’m hoping to see one or the other next week (my biopsy results should be back by then) but I haven’t received an appointment yet so I may have to call them midweek to find out what I’m meant to do once my modulen runs out. I hope I won’t be continued on it (or any other nutrition drinks for that matter) and that they’ll say a free-fluids diet for a few weeks. I know I can handle soup without experiencing any pain or other symptoms so fingers crossed.

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.

An interesting week

I’ve had an interesting week; Tuesday night through to yesterday (Wednesday) evening, I experienced horrible stomach cramps and my stoma stopped working. I called my GP for a phone consult and she did a home visit (because she didn’t want me to walk upto the surgery) to listen to my gut and check I wasn’t distended. Typically, my stoma started working about half an hour before she arrived at my flat, but she said my gut didn’t sound blocked. It didn’t, however, sound quite right to her either so she said to drink plenty and to only eat when I felt like it. I didn’t have much of an appetite yesterday but it seems whatever was causing the cramps has passed because the blobs been active all day today and I’ve been eating little meals throughout the day too. Doctor said to call if the cramps start again so I’ll need to keep an eye on things.

Other than that, I feel OK in myself. I’m sleeping a little better and I’m wanting to move around. I’m getting a little restless sitting at home all day everyday so I’m planning on going out for lunch with my mum tomorrow. I just hope the weather is nice and that I can manage the walk.

Day 26

I’m going home! I’m just waiting for my PICC line to be removed. I’m so happy to finally be going home, I can’t wait to sleep in my own bed.

My stomach cramps have been pretty minimal today so I was able to eat my lunch no problem. I’m just tired now.

They’re giving me some fortijuce to take home with me but no other medication, which is a first.

Positive vibes!

Day 25

The doctors are pretty happy and, provided I can keep food down again today, my PICC line will be removed and I may be discharge tomorrow.

I’ve managed half my cheese sandwich so far today but my tummy is aching so I’m taking it very slowly. I’m going to try and tackle the other half later this afternoon.

The pain is bearable but it can be a bit much so painkillers are still being offered. I’m trying not to ask for oralmorph because I don’t want to become dependant on that but I will if the pain gets too much. They did say I can have a bottle to take home with me if need be but I’d rather I only needed codeine and paracetamol.

It’s been almost a month since my surgery so I am really looking forward to being back home again. I miss my bed, my computer, and, most importantly, my partner and my rats. I know he comes to see me every evening but I still miss him just being there during the day.

I’m not getting my hopes up too high but I’m staying positive. I hope everyone is having a good and safe weekend.

Day 24

Generally feeling pretty good today. I’m still a bit sore around the middle but that’s to be expected. Food-wise, I’m still eating small amounts of soft food but I’m going to try a sandwich tomorrow and see how my gut reacts to something more solid than soup.

The doctors are hoping to send me home this week but we’ll see. It’s been almost four weeks since my surgery and I think I’m mentally ready to go home but my body isn’t quite there yet.

I need to make myself a meal plan for when I get home to ensure I don’t overeat for the first month or so. If I actually get around to writing it down, I’ll be sure to share it.