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 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.
I went to an IBD information open day today at my local hospital. There were lots of resources for patients as well as their friends and family, and the talks covered things like exercise, research, diet and the hospital’s IBD helpline. Even though I know a lot about my disease already, I still found it informative and interesting. There wasn’t much time for networking or socialising but it was still good to be there among those who suffer as well and those who are helping make it bearable.
Next week, I’m going to a Crohn’s & Colitis UK coffee morning meet up. I haven’t been to one for a while so I’m looking forward to seeing how everyone is doing. Although I don’t feel I “know” any of the regulars at the meet-ups, I still feel some sort of connection because we have this disease in common.
As for how I am doing, I feel my recovery is going well. I went back to work three weeks ago and it’s going well so far; I’ve a gradual return, with my first week consisting of one and a half weeks because I had a week of annual leave straight after. The second week was two full days but they were easy as it was quiet and there wasn’t as much to do. This last week I worked four days with a day off in the middle to give me time to rest. I have found getting back into it easier than I thought and there are only a couple of minor adjustments I need at the moment. These adjustments are mostly regarding my ability to aid a disabled patient, specifically mobility aid users, as I can’t push a wheelchair nor support another person due to my stomach muscles still healing. This is to protect both me as well as the patient as if I am unable to support someone and they fall, I can’t help them back up again. It’s frustrating because I hate how I am not able to help my patients the way I should. Still, this is only temporary for me and I know eventually I will get better. I am for the forseeable future going to keep wearing my support belt as it helps prevent muscle pains during my work day.
As for my diet, it’s great; consisting of lots of bread, crisps, chicken, potato and chocolate. I’m not underweight but I’m on the lower end for my height so it wouldn’t hurt for me to put some back on. Plus, I’m almost always hungry so snacking is a good thing as far as I’m conscerned. This need to snack does pose a slight issue with my work though as I only get one break during the day and, no, unfortunately I can’t split it due to task assignment. I may have to start stashing snacks in various places so I can eat when it’s quiet.
Anyway, that’s all for now. Hopefully, I’ll have more to share over winter with the cold weathers effects on stoma bags etc, as well as the perils of Christmas dinner. Thank you for reading!
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.
It’s been two months since surgery so I thought I’d do a little update.
I haven’t had a partial blockage in a while now and I feel my appetite has returned so I’m eating normal food now in slightly smaller portions with the occasional snack in between meals. I’ve found a normal diet (including gluten and milk) is working fine for me at the moment but I suspect I’ll have to reduce my gluten intact later once I’ve recovered a bit more and my eating habits return to normal. My snacks are usually either crackers, PomBear crisps (I find crisps like Walkers don’t digest too well) or biscuits/cookies. My main meals mostly consist of chicken (breaded or in a non-spicy sauce) with some form of potato (chips, wedges, mash ect.) I can’t eat beans so I’ll sometimes have tinned spaghetti instead. Noodles and pasta are ok for me in moderation but I don’t cook a lot of it as it’s only me who’ll eat it. As for sweet stuff, pretty much anything is fair game so long as it doesn’t have any nuts/seeds or dried fruits in it. I sometimes binge on cookies or chocolate.
As for my walking, I’m able to walk just fine when I’m inside my own flat or at my parents as I know there are plenty of places to sit down if I need to. However, when I’m outside, I’m a bit slower and a lot more cautious of the people around me (I don’t fancy an accidental elbow to the stoma). I’ve been using my walking stick for the last month or so but I don’t feel I need it as much anymore. I’m sort in a grey area of needing it and not needing it so I’m trying to go out with it in my bag in case I need it later, rather than using it straight off the bat.
In regard to my stoma, it’s been better since using the barrier rings my stoma nurse gave me. The skin looks and feel so much better and the bags feel like they could last an extra day if I needed them to which is ideal.
Lastly, I’ve got an appointment to see my surgeon about closing off the blob later next month so if all goes well, I’ll be stoma-free by the New Year.
I managed to go out twice in the last five days! I’m back to using my walking stick but I don’t think I’ll be needing it for as long this time. I can walk faster and for longer now verses last year, but I still need the extra support when going out for a long time. The stick also acts as a warning to others that I can’t move that quickly and they may need to be careful when moving around me. It doesn’t always work though as I have had a couple of people (noticeably older people) who have felt it would be fine to just knock me with their bags. Luckily, I was stationary and with someone else when this happened but still.
(Side note: It’s odd but I have found that the people who are the most considerate and take note of my stick are around the same age as me (30) or younger. I don’t mean this as a slight against older generations, it’s just something I’ve noticed.)
Anyway, in terms of eating, I think I’ve been over-estimating my guts capacity because I have had stomach cramps on and off for the last few days. It was worse yesterday (Tuesday) but it seems to have gone for now. I’m finding that the cramps are most severe if I eat too much stodgy food (like bread, batter, pastry ect) and this makes me feel sick. I’m going to try and eat four small meals a day instead of two big ones (I don’t eat breakfast). For today though, I’m only having snacks every now and then because my gut is still sore.
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.
I’ve been home almost a week now and things have been both good and bad; I’ve been able to eat a bit more without feeling sick, I’ve been controlling my pain fairly effectively and I was able to walk a fair bit today with my walking stick.
However, I am still getting a lot of wind passing through my stoma, the skin around him is still a tad bit sore, and today I have experienced what looks like blood in my output. As it turns out, blood in output is quite normal but I did get a bit worried and I did several things to try and get answers.
Firstly, I posted on the No Colon Still Rollin’ Facebook page and the guys there were very supportive, saying it’s normal and not to stress too much about it. Secondly, I spoke to an out of hours doctor (it’s Sunday so my GP and stoma nurse are closed) and she said I could be seen in the emergency clinic. I didn’t really want to do this as I don’t feel this is an emergency and that appointment could be given to someone who really needs it. Also, while I was speaking to her, my amazing partner did a bit of research online and confirmed that it is indeed normal for new stomas to bleed a bit for the first five to six weeks. I am still going to call my stoma nurse tomorrow morning just in case, but this has put my mind at ease so I’m not too worried about it.
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.
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.