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.

Small Achievements #1

I was able to stand up with little to no assistance.

For context, I’ve had a procedure that involved putting me under anaesthetic and performing a pouchoscopy (a scope of my jpouch) and placing a cathatar into my pouch so what is currently trapped in there can drain. The opening to my pouch is so inflamed, it’s practically closed, resulting in me not having passed ANYTHING for over a week now. It has been excruciatingly painful and my stomach has been very distended. This meant I could barely leave my bed without freezing in pain at every movement, let alone standing and walking.

I’m by no means healed but I am comfortable, at least, so healing should follow soon.

In hospital… again.

I was admitted via a&e last night with severe abdominal cramps and vomiting. They gave me morphine and have since put an NG tube up my nose and started me on IV fluids. They’ve done an xray and said it looks like a bowel obstruction. They’re observing me for now and keeping me on painkillers. I don’t know what the plan is so I guess I’ll just have to wait and see. There was talk of a CT scan or ultrasound but that was hours ago and I doubt it’ll get done today.

I’m so tired. I’m going to try and nap again before they decide to do anything else.

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.

Day 16

I didn’t sleep as well last night but I did sleep at least. I haven’t needed painkillers all night or at all today, and they’ve finally removed the NG tube. I’m now on free fluids and, so far, no pain nor vomiting. The doctor seems pretty happy and he said I might be able to try solids tomorrow but we’ll see; I don’t want to do too much before I’m ready.

Day 15

I slept much better last night so I am feeling a lot better today. I’m still on TPN and it looks like they’re going to continue that over the weekend (the nutrition doctor said they want to up the calories I’m taking in). They’ve closed off the NG tube but it’s still in just in case. Nothing is coming out of it but it’s making my nose run so I’m going through tissues like a mad woman.

Overall, no pain so far today, not even when my stoma is doing stuff. I haven’t had a IV paracetamol since this morning because I didn’t feel I needed it this afternoon.

I’m currently enjoying not being on the ward and am sat in the lobby of the hospital. It’s pretty warm here but not overly so. I can also smell all the food from the M&S cafe and Costa that this hospital has (it’s like a mini shopping centre). It’s a shame I can’t eat any of it but I’m sure I will be soon.

Day 14 (minor TMI warning)

Today has been a much better day despite the rocky start this morning (I struggled to sleep again last night because of the NG tube). I’ve been on the TPN since yesterday evening and it’s given me a big energy boost so I was able to shower and go for a nice walk to outside the hospital, but still on the grounds, with my aunt.

The NG is bringing up very little now so I’m hoping it’ll come out Friday. Also, my stoma is still producing green bile but nowhere near as much and it’s more mucusy which I think is definitely a step in the right direction.

I’m going to try and stay as positive as I can so I can continue to recover. I don’t think I’ll be home before Wednesday next week but I’m content with that for now.

Day 13

I’ve got a PICC line in now. They haven’t started the TPN yet but I think they are going to soon. I’ve still got my cannula in but that’s only so I’m getting some fluids while I wait. The NG tube is still here. I was hoping they might take it out but when they asperated it last, there was still a bit if green bile coming out. My stoma is still producing green liquid too. The doctor is hoping that by having a few days on TPN, my system might have woken up. We just need stuff to stop coming out of the NG and out of my stoma. Fingers and toes crossed this will all be over by next week.

Day 12 – update

They did a CT scan this afternoon and, although there are no twists in my bowel like they suspected, it does appear my small intestine has gone to sleep. They put in an NG tube last night so I’m no longer throwing up nor do I get major stomach cramps anymore, but it is irritating my throat a bit. Still the lesser of two evils.

As for cannulas, I’ve been through three in twenty-four hours so it would seem my veins are starting to give up.

I’ve been nil by mouth for the best part of a week so they want to put in a PIC line (sorry if that’s the wrong spelling) tomorrow morning so I can have some nutrition.

To be honest, I don’t want anymore tubes in me. I’m hurting and uncomfortable from everything they’ve had to do already and I’m not looking forward to having anything else. But I know it for the best; if I want to go home, it’s through a path of tubes.

Day 7

The NG tube seems to have done the trick as my cramps are almost completely gone. I did have to ask them to remove it today though because it was making me gag. The new cannula is doing well, I’m on IV fluids at the moment because I wasn’t drinking yesterday. I’m on free fluids now but they recommended to see how I go and to play it by ear, so to speak. I’m quite tired still so I’m going to try and catnap this afternoon.