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 by 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 are 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 Sandy 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.

Recovery update

It has been five days since my surgery and I think I am healing fairly well.

My pain is being well controlled by the PCA but it has been reduced to just morphine without the ketamine, with a low dose of morphine running in the background. They removed the rectus sheaths (anaesthetic being pumped directly into the wound) yesterday as one had broken and was leaking and the other wasn’t doing much either. They’re only meant to be in for three to four days anyway.

I’ve still got my cathatar in, which I suspect will stay in until I’m moving more freely. The drain is due out today, with the NG tube coming out tomorrow. And my diet has been upgraded to clear fluids.

I am feeling a lot more comfortable today and I’m even able to get out of bed, with little assistance. My hope is to start going for short walks to build up my strength.

Surgery went well

I’ll keep this brief as I am very brain foggy.

Yesterday I had my EUA (endoscopy under anaesthetic). From the results, my surgeon determined I would indeed need stoma surgery. He wanted to wait until this morning (Saturday) but because I was in so much pain (I’m quite sure I asked them to knock me out at one point), he said it would be cruel to leave me like that and took me straight back into theatre.

I’m in intensive care at the moment with a cocktail of painkillers being pumped into me.

Surgery update (in rant form. Sorry)

On Saturday, I had what’s called an EUA, or endoscopy under anaesthetic, in order to see what was going on in my jpouch. It showed the entrance was narrowed by a stricture and there was some liquid in it so they inserted a drain. The doctor who performed it tried to stretch the stricture with his finger (I didn’t know this until later).

Afterwards, all seemed fine for a bit until I started getting pains in my lower abdomen and near my rectum/pelvic floor. As it turns out, when try to stretch the stricture, the doctor had accidentally created a hole in my pouch and there is now an infection in the cavity behind it (to say my surgeon was not happy about this would be an understatement). “Fortunately”, the drain had gone through the hole as well and was trying to drain the waste that has leaked though. It was painful but they couldn’t do anything until the next day (Tuesday) at the earliest.

The plan, as far as I knew it, was to have an EUA so my surgeon could assess the damage. Once this was done I’d then have surgery to have a permanent stoma put in. I was told that I’d have the EUA this morning (Wednesday) and then the stoma surgery this afternoon.

That hasn’t happened. It turns out there was some miscommunication between my surgeon and another Dr. What is actually happening is my surgeon is performing the EAU this afternoon and I am last on his list. Fine. The stoma surgery will be scheduled for later this week, most likely.

What was said would happen but hasn’t (by the other Dr) is that I was first on the list to have the EAU and that it “didn’t matter” if the drain had fallen out this morning (which it did but hasn’t caused any issues). There was no mention of when the stoma surgery would be, only that they might not even have to do it. (My surgeon has already said going back to a stoma would be what’s best for me at this point).

I am struggling now as I’ve done nothing but lay around and wait for someone to take me for a test or scan or tell me some results. It’s tiring and I’m fed up. I want this fixed so I can go home and continue living.

World IBD Day

Today is World IBD Day and I wanted to share a few things (treatments, symptoms ect) about living with IBD that I have personally experienced.

Symptoms of IBD that I have had include stomach cramps, fatigue, diarrhoea, constipation, weight loss, partial blockages of the small bowel, dehydration, blood in my stool and muscular cramps in the abdomen. I haven’t had all these symptoms at once (thankfully) but I have experienced them all in some capacity and in various combinations.

Treatments I have tried for my IBD include a lot of medications as well as surgery. I have been on anti inflammatory (mesalazine), steroids (prednisolone), immuno-suppressants (azathioprine, mercaptopurine & infliximab), anti-ulcer (omeprazole), antibiotics (co-trimoxazol), meds for bile salt malabsorbtion (colesevelam), as well as vitamin/mineral supplements (folic acid, adcal-d3 & colecalciferol). I have also been on fortisip nutrient drinks and (as of this week) modulen which is a complete nutritional replacement drink.

Other treatments (for lack of a better term) would be surgery. I had my colon removed about two years ago and a temporary end ileostomy (stoma) placed. Although many would assume this has “cured” me of my Ulcerative Colitis, removal of the affected organ sadly does not cure an auto-immune disease.

Side effects of these many treatments are numerous. From the medication alone I suffered with bloating, insomnia, loss/increase of appetite and weight gain/loss. The surgeries came with there own set of side effects which included muscle spasms in my rectum and abdomen, partial blockages of my small bowel, strictures (narrowing of the gut) and ulcers from infection. I also suffered with a case of ileus which is when the muscles that move food through the gut slow down, causing the bowel to effectively stop working for a time. This happened after my second surgery to form my j-pouch and took about three-four weeks to heal. Treatments for it included an NG-tube (a thin tube that goes in through the nose and down the oesophagus into the stomach to extract food and other waste that can’t move into the small intestine), and TPN (Total Parenteral Nutrition – another form of liquid nutrition that is fed via a PICC line (Peripherally Inserted Central Catheter) that goes in through a main line in the upper arm and ends somewhere near the heart).

I think out of all the things I listed here, ileus was the worst. It came on suddenly after surgery and meant I wasn’t allowed food for almost a month. It started with vomiting and my stoma stopped working (meaning nothing was passing through my gut). This is when they inserted the NG tube. They had to replace it once but it stayed in for about two weeks to clear out my stomach. In the meantime, they inserted the PICC line (which can be left for several weeks or even months) and started me on TPN. Eventually, when the NG tube wasn’t bringing anything else up, they removed it and after a couple of days, allowed me to try soup. When that stayed down, I was allowed to try soft foods and, eventually, I was back on normal diet and discharged from hospital after almost four weeks. This is the longest I’ve had to stay in hospital and I hope to never experience it again.

So, there you go. I know it’s a long post but I thought it would be worth sharing as people so often underestimate the impact of IBD on a patients life.