#eating with an ostomy

It’s been a little while since I last updated but there hasn’t been a lot to share. Seeing how it’s Christmas though - and we all know how fun that can be when it comes to the eating part - I thought I’d write a little update of how things have been since last time.

So, having since seen the dietitian and tried (and failed) to eat more fruit, I have started taking a multivitamin daily and have been having the occasional fruit smoothie (usually consisting of a bunch of bananas that are near going off and some chocolate chips and/or honey). I still have some tinned fruit which I’m planning of turning into smoothies at some point. Other than that though, I have been avoiding having much in the way of fruit and veg because of how badly my attempts to eat even just a little bit have gone. My stoma nurse agrees that I should listen to my body and eat what I know is safe for me, feeding back to my dietitian when I next see her.

As for the low sodium, I’ve given up drinking the St. Mark’s rehydration solution because it makes me super thirsty and I always go over my 2 litre daily fluid limit. Instead, I’ve been having other drinks like Lucozade and Sneak supplement drinks as they contain sodium as well as a load of other extra vitamins. With these, I’m able to stay within my daily fluid limit and I don’t feel thirsty at all by the evening. I realise this isn’t the same as taking the St. Mark’s solution, but it works better for me, and I am going to speak to my GP in the new year to make sure she is happy with what I am doing.

On a more positive note (minor TMI warning), I was able to eat Christmas dinner (complete with a few veggies) and so far so good; I haven’t had any issue passing anything and my stoma output has been ideal, with only a tiny bit of pancaking but no leaks! I was able to have carrots, roast potatoes as well as a spoonful of mashed swede, a piece of cauliflower and a single parsnip. I want to try and add more veg to my weekly meals, even if it’s just some carrots and potatoes, so this is a positive sign.

Anyway, whatever you celebreate, I hope you have had a fun-filled and safe 25th December.

I saw the dietitian early last week and it turns out my sodium is super low. She recommended I start drinking 1 litre of the St Mark’s rehydration solution daily and 1 litre of other free fluids. She also said I need to start reintroducing fruit and veg and gave me some info on how best to do so. She recommended tinned fruit as a good alternative to fresh fruit as it’s softer and has already skinned, so I bought some tinned fruit to try.

A few days after seeing her, I tried having a few bits of tinned apple and mango. It went through me fine but my output for that afternoon was near solid so it ended up pancaking in the bag and almost caused a leak at work. Thankfully, I had my emergency kit with me so I could change in the toilet. I left it another couple of days before trying the apple again (leaving out the mango because I thought this was a bit too physically fiberous for me), but once again, I pancaked and had to change at work. Since then, I’ve stuck to banana’s and smoothies because I don’t want to risk another leak, especially if I’m not at home. I’m also going to start taking mutlivitimans daily and try to have fruit smoothies more often. I know I can eat carrots and potatoes when they are peeled and cooked well so I’ll be doing that too.

I know the fruit didn’t cause a blockage but it could have done and I’m so scared of being hospitalised again. I feel as a medically trained dietitian who’s working with new and veteran ostomates, she should know more about how certain foods effect the stoma output as well as the intestines. If I was brand new to having a stoma, I’d have followed her advise and probably be dealing with leaks if not a full-on blockage. I’ll be sure to let her know of the outcome of her advise when I see again early next year. (Don’t worry, I’ll be nice.)

I went to a Crohn’s & Colitis UK coffee morning today with my mum. It was good to meet new people, we talked a lot but there’s never enough time to speak to everyone. I hope to go to the next one near me though. I met someone who has had a jpouch for around ten years now, and I spoke to someone who came with their mum (like me) and who both have Crohn’s. A couple of them were also at the IBD open day last weekend too. I’ve always thought that these meet-ups are a good idea, they give you somewhere to talk freely and feel safe, as well as being part of a community that understands and doesn’t judge because they’ve been there. I know they’re not for everyone but I enjoy it.

In other news, I saw my surgeon last week and he’s very happy with how I’m doing. He said he doesn’t want to do anything now for at least another year, which is fine by me (two surgeries is more than enough for this year, thank you very much). He said I’ve got three options though; 1) I can have my stoma closed and try the jpouch again, 2) I can have my jpouch & rectum removed, a permanent end ileostomy formed and have a barbie-butt, or, 3) I can stay as I am with jpouch & rectum intact and loop-ileostomy. I am quite content to stay as I am for now, but eventually, I will want to go for option 2; permanent stoma and barbie-butt. I don’t want to go back to the jpouch because not only is it ulcerated, but I still have the perforation near the entrance, both of which make me not want to risk it failing again and having to have yet another surgery. I could stay as I am indefinitely but I think I’ll always feel like it’s not finished and I just want this to be sorted once and for all.

So, that’s it for now. Work is going well and I feel able to do more things and for longer. My appetite has returned with avengence so I’m eating like a horse at the moment. My weight is very slowly increasing so all good from where I’m sitting.