Again, let me apologise for being MIA for a bit. The truth is, I’ve been struggling a lot recently and blogging hasn’t been that high on my priority list. That being said, let me catch you up on what’s been going on with me lately.
As mentioned in a previous post, brain fog is a very real and serious side-effect of being chronically ill. I don’t usually suffer with it but the last few months have been quite different…
It started with a drop in my appetite. A normal day for me would consist of having lunch and dinner, and maybe breakfast in the morning if I felt like it. But I began to not feel hungry, and the idea of food would make me feel sick or nauseous. I began eating less and less until it began affecting my energy levels at work. I spoke to my IBD team who recommended I started back on the modulen. This lasted for about a week before I couldn’t manage it anymore and reintroduced solid food alongside the modulen until I was able to eat a bit more and could cut out the liquid nutrition all together. However, I soon realised I had “shrunk” my stomach; I wasn’t able to eat a full meal anymore. I started eating little and often, around five to six small meals a day. This has sort of worked but it’s not always possible to eat midmorning or afternoon, especially when I’m working, so I don’t always get enough food. This has continued for some time now and I’m still trying to get my appetite back to normal so that I might be able to eat more.
Lately though, this has proved difficult; because I haven’t been eating that well, I’ve began suffering with fatigue. This fatigue has caused me to be unable to do much after work or on my days off, leaving me incapable of properly taking care of myself.
This drop in appetite and increased fatigue has left me feeling drained and I’ve begun to struggle mentally. I won’t go into details but it’s got to the point that I’ve reached out to Steps2wellbeing, a UK-based mental health organisation who I have used in the past and may have mentioned before. The initial triage session went well and I’m on a waiting list to start CBT (Cognitive Behavioural Therapy). I’m not sure if it’ll work but I feel it’s worth trying because that’s better than doing nothing.
As for my physical health, that’s begun to decline again and I have, once again, been signed off from work. I don’t know how long I’ll need but even my works occupational health team believes I need time off so I’ll take their advise. I’ve had a blood test as well as a faecal calprotectin. These have shown that some of my inflammation markers are a little raised but not a lot else. And to make this even better, I was admitted to hospital on Monday.
⛔ TMI Warning for this next bit! Please don’t read any further if talk of poop or other bodily secessions grosses you out. Thank you for reading this far and I how you are staying safe. ⛔
OK, so since being admitted via a&e, I have had a CT scan as well as an xray, which have shown that I have inflammation in my small intestine (mostly the lower part, below my stoma) but thankfully no twist, like my GP suspected. The CT also showed that there was something in both my old jpouch and the part of bowel going up towards the stoma (most likely mucous) which was making them both a bit distended. My surgeon has recommended I start antibiotics to help control the inflammation (which I have) and, hopefully, whatever is in the old pouch will eventually come out via my back passage. I started the antibiotics Tuesday but it’s still early days yet.
Eventually, I’ll have the excess bowel removed. My surgeon said that should stop (or at least reduce) the inflammation in my small intestine. Obviously, I can’t have that done now due to Covid, but maybe in six or so months time.
So that’s what’s been happening with me recently. If you made it this far, thank you. I appreciate you reading my rambling posts. This one in particular is a bit disjointed because I wrote over several weeks where a lot was going on, making it hard to concentrate. I’m sorry if some parts didn’t make a lot of sense but the brain fog is pretty strong right now. Anyway, thank you again for reading and I hope you are staying safe.
Tag: recovery
Medical PTSD
Disclaimer/Trigger Warning: I debated for a while whether I should post this as it is a bit raw, but I feel it’s important to share every aspect of living with this disease. Please feel free to skip this post if you’d rather not read it.
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“You’re being admitted.”
Those words have been spoken so many times to so many people. No one likes being in the hospital and it can be a frightening experience. But what about when you’re being told it for the third, fourth, fifth, eight, tenth time? Time seems to stop, and your stomach feels like it’s just dropped out. And then the negative thoughts about never getting better start up all over again. And your brain is there reminding you of all the previous times you’ve been in this exact situation. And you know the doctors and nurses are just trying to help you feel better but you can’t help but feel some minor resentment towards them and you can’t take it so you burst into tears, just wishing you could wake up from this nightmare!
That’s medical PTSD.
Post-Traumatic Stress Disorder is real and can happen to anyone. It should be talked about and acknowledged, regardless of your experience. And for a lot of chronically ill people, it centres on their condition/s.
My trauma stems from having been admitted to hospital ten times in just under four years and from having tried seven different medication, none of which worked to get me into remission. It comes from having had four surgeries in three years, two of which were emergencies to save my life.
Despite the nurses being incredible and amazing, despite the doctor’s efforts to help me, I still fear going into hospital because I know what happens when I do. IV fluids are the first thing to go up, usually followed by either antibiotics or steroids. This is to stabilise me whilst they decide the next cause of action. They do x-rays and CT scans to make sure I’m not obstructed and that my bowel hasn’t twisted as both have happened in the past. And depending on what the outcome is, sometimes they’ll insert an NG tube to drain my stomach, or perhaps a drain for an abscess. Sometimes, this will take a long time and I end up with a PICC line in my upper arm so they can give me TPN in place of food.
And sure, I’ve come out alive and mostly unscathed. I’m breathing and still able to move and work and take care of myself because of (or perhaps in spite of) what I’ve been through. But that doesn’t make it any easier.
People tell me I’m brave, but bravery implies there was a choice. I didn’t choose. I wasn’t asked. On life’s questionnaire I didn’t tick the box labelled “chronic illness”. That was something that was thrust upon me without my consent.
What I’m trying to say is that for me at least, hospitals are a source of endless trauma and fear, and even going in for a simple blood test or check-up puts me on edge.
I suppose I should say something positive about how I’ve got my family beside me keeping me grounded through all this. But the truth is, not even they know the full extent of how badly this has affected me. I’ve sought out therapy before and I dare say I’ll seek it out again before long.
I’m sorry there’s no happy ending to this article but thank you for reading if you’ve made it this far. And please know that whatever you’re going through, you’re not alone. Please stay safe.
Coffee Morning!
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.
IBD open day & a work update
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!
Why am I using my stick today when I didn’t need it yesterday?
I am travelling by train for the first time since my surgery. The journey involves several changes and I am carrying quite a full backpack. As I am still recovering, I need to be careful that I do not fall or get knocked into as these could both potentially cause muscle strain that can lead to other complications. Although I haven’t needed my walking stick for the last couple of weeks, having returned to work this week has shown me that I am far from fully recovered.
As my work requires me to be on my feet a lot, by mid-afternoon yesterday my stomach muscles were beginning to protest. I thought this ache would go away if I sat down and hugged my hot water bottle when I got home but, unfortunately, the pain persisted throughout the night and I am still quite sore even now.
What does all this have to do with my using my walking stick today? Well, as I am travelling through the busy London underground for part of my journey, it will not only help support me as I walk around, but it will also act as a “red flag” to other commuters that I won’t be able to move out of their way and to be mindful to not jostle me as they rush for the tube.
I have said this before but I think it’s worth repeating because not everyone understands that you can be fine one day and not the next. Recovery is not linear.
Salts bag trial and review
I saw my stoma nurse earlier this week and, after a brief chat, we decided I may need a convex bag again but because she was conscerned my stoma might prolapse if the bag was putting too much pressure on my bowel, she offered the Salts 1-piece drainable convex bag to try for a bit as they are meant to be more flexible than other convex bags and so shouldn’t put as much pressure on the bowel.
It’s a tad bit smaller than the Sensura Mio, with a petal shaped baseplate and a drainage end similar to the Dansac drainable, except it has a small tab on the end which makes opening it easier. The material used to cover the bag is soft, water repellent and makes the bag look a lot less clinical. First impressions after wearing it for an afternoon where that it was a good bag that held it’s shape fairly well when full and that didn’t rustle when moving.
But.
I had issues with the opening. I found, although easier to open and clean than the Dansac, it was still messy and would leak a tiny amount of output when closed because it lacked the extra side tabs that the Sensura Mio has.
I thought that maybe I could get used to the opening but then I realised that I was scratching myself raw around the edges of the baseplate – something I was told shouldn’t happen because there is aloe vera in the adhesive to prevent such itchiness. If this was the only issue then I might not have minded too much but because of the opening as well, I’ve decided I prefer the Sensura Mio.
That’s not all to say that the Salts bag isn’t any good. I like it, I really do. It’s just that I can’t get on with the opening (I guess the Sensuro Mio has spoiled me?) and the reaction to the adhesive. I don’t want to deal with the tiny leaks or the itchiness, things that I haven’t had with the Sensura Mio.
I have had other ostomates mention/recommend other bags to me so I may try them in the future but, for now at least, I’m happy with what I’ve got.
Using a mobility aid after surgery
I have had four surgeries on my gut in the last two years. As you might imagine, this puts a lot of strain on my stomach muscles. Muscles we use for pretty much everything, from carrying to simply standing.
When you first start moving after surgery, every twist, every step is painful and you feel like you might just rip your stitches open at any moment. Thankfully, while in hospital, there is always someone to help you, to hold your arm or fetch a wheelchair for you when you can’t quite make it back to your bed. However, when you’re home and out in the real world, those safety nets aren’t always there.
It takes a while for your muscles, and in fact your whole body, to recover and adjust to how things are post-surgery. Sure, a friend or family member will likely be with you on every excursion out the house for the first few weeks but what about when you want to go out when no one can go with you? What about even when someone is with you but you’re not sure you’ll make it to the car, let along the cafe you’re going to for lunch?
That’s where mobility aids come in.
I have a walking stick. I am 31 years old and look fairly healthy, albeit a bit skinny, and I have a walking stick. I got it for the very reasons mentioned above. I can go out with family, sure, but they can’t always hold me and most probably couldn’t lift me if I fell. The walking stick acts as a support for me if I stumble or when going up or down steps, it allows me to keep my independence. It allows me to walk further and for longer and gives me the confidence to go out on my own.
But it’s not only that. It also acts as a warning to others who can’t see the scars, the ostomy bag and the healing wounds, that I may be slower, unable to move out of their way or cross the road in time. It lets people know to give me a little extra space, to catch that door or hold the lift.
My point is that mobility aids are useful and we shouldn’t be ashamed to use them just because we may look healthy or young or otherwise as if we don’t need it. If you feel you need a mobility aid, regardless if it’s a wheelchair, a walker or a walking stick, you should use it. It doesn’t matter if it’s for six days or for the rest of your life, you should use the tools at your disposal if it makes life easier for you.
And to anyone who has felt the need to question why someone is using a mobility aid, it’s none of your business. You don’t know what’s going on inside, what that person is dealing with. They may be walking fine but that’s probably because they are using that mobility aid. Please don’t be so quick to judge.
I’m going home!
So, I am finally going home! I was moved onto low-residue diet last night and have kept down three solid food meals. I feel fine, albeit a bit tired, and am itching to get back to my space.
I don’t know how long I’ll be signed off for but I imagine it’ll be for at least a few weeks.
I’m just waiting for the discharge paperwork and sick note and then I’ll be free to go.
Update
So, I’m on free fluids but I’m having some trouble keeping it down. We think it is linked to my anxiety so I’m having diazopan to help keep me calm.
I managed to have some soup for lunch and I’ve been prescribed Scandy Shakes which are a different type of nutrition drink from Fortisip made with powder mixed in milk. It tastes better than Fortisip and is less thick. I’ve been able to keep all that down so far so fingers crossed the diazopan is helping.
I’ve also had my cathatar and PCA removed and I’m also cannula free, for now. They’ve stopped my antibiotics and are going to see if my inflammatory markers stay down because of they do, that’s means the infection is gone.
The drain is staying in until at least Friday and they said that if need be, I can go home with it. Honestly, if it means I can go home, I’ll go with the drain. Fingers crossed I’ll be home by the weekend.
A week post surgery
I’ve had a bit of a set back. Yesterday, I woke up feeling very cold and shaky. My temperature was ~40°c and I was tahycardic, with heart rate over 130bpm!
The nurses and doctors were quite concerned and I was put on a very strong IV antibiotic, which helped a lot. They also put me on IV fluids as I was feeling sick and wasn’t drinking much. They did blood culture checks, both peripherally (from a vein) as well as from my PICC line because there was a chance the line was infected. They also did a urine dip from my cathatar.
While they were waiting for those results, they took me for a CT scan to check if I had any liquid pooling in my pelvis. Unfortunately, I have a pooling near my stoma and they had to put in a drain last night. I believe my PICC line is fine but they’re not using it at the moment.
I’m very sore and achy, and not as mobile as I was a few days ago. I feel like I’ve taken a few steps back.
What Can I Eat 