Tag: stoma

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.

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 20 – an update

It’s been almost three weeks since I had my stoma closed and things are going fairly well; I haven’t had any accidents (yet) and I’m slowly reintroducing foods I enjoyed with my stoma. I have found that if I eat too much though (for example a whole oven pizza), I don’t have a fun night. And what I mean by that is a lot of discomfort in both my stomach and my pouch as that much food travels through my gut. I am able to control this with painkillers, though.

My wound was checked by my GP nurse last week. It’s healing nicely but the middle was still a bit open so she left in four of the clips. I’ve got another appointment with her tomorrow where, hopefully, she’ll remove the rest of the clips. I’m looking forward to it being fully healed so I can have a nice bubble bath, something I haven’t been able to do for quite some time.

As for my mobility, unlike last time, my legs haven’t atrophied so walking or standing for any length of time is a lot easier than it was after either of my previous surgeries. My stomach is also not as sore as it was last time. I think both of these are because of how simple and straight forward this last surgery was. Where as back in June, the surgery was quite a bit more complicated (they were reconstructing a lot and moving my guts around quite a bit) and the recovery directly after was difficult due to the aforementioned moving of my guts making them shut down temporarily (otherwise known as ileus). This time was easier as the surgery itself was only two hours long and it involved a lot less handling of my gut meaning I was less likely to develop ileus.

For the most part, I feel fine. I’m able to walk around and do a few household chores but this does tire me out and I find I need to rest for a while before trying to do anything else. I spend a lot of time sitting at the moment (mostly reading or on my computer) but I am starting to go outside. I was able to go for a short walk the other day but, again, this made me quite tired. I’m sure this will improve overtime as it has in the past so I need to be patient, recover isn’t linear.

I am home!

Sorry for the lack of updates the last few days, there hasn’t been much to report. But now, I am home. I have been signed off work for the next four weeks so I’ll have plenty of time to adjust and get used to my new “plumbing”.

So far, everything is going well but it’s early days. Hopefully, things will continue to go smoothly and I’ll have little to no issues with my j-pouch.

Quick pre-surgery update

The last few days I’ve had a pain just above and/or to the left of my stoma. It feels like a partial blockage but it’s not moving and my stoma is still working. I find laying down makes the pain a worse but my hot water bottle helps ease it enough to sleep. I’m avoiding food that can cause blockages or are hard to digest and drinking plenty so hopefully it’ll pass.

Ask

@thoughtsfromtheam asked,

“Do you mind me asking what surgery you will be having? I had my large intestine taken out in 2015, then had a colostomy while it healed for 6 weeks, then had it taken down. Is that similar to what you are having done. I have a J-Pouch now.”

Firstly, no of course I don’t mind you asking. I am very open about this and am happy to answer questions if I can.

Secondly, yes. I had my colon removed in April 2017 resulting in an end ileostomy. I then had my j-pouch formed with a loop ileostomy in June 2018 and am currently waiting to have that taken down. I hope this was helpful.

Update

I’ve had an interesting last couple of weeks. Aside from the aforementioned surgery and subsequent cancellation of said surgery, I found that one of my surgical wounds from June was starting to open. It’s situated under my bag so I didn’t notice it until last week but the very end nearest my stoma had started to open and has formed a tiny hole about 2-3mm long. Not really a problem until I noticed it was bleeding. I called the hospital and they said speak to my GP who, after a phone consult, gave me antibiotics because she said it sounded like I had a minor infection.

I’ve been taking the pills for about a week now and they seem to be working but I’m still a little concerned as the hole hasn’t closed completely. It’s not bleeding anymore though, so I guess that’s a small sign of improvement. Because it’s under my bag, I do wonder if something got into the would from the adhesive or while I was changing my bag and that’s what caused it to open. Because the adhesive sits right on top of the wound, I’ve started covering it with a small plaster so I’ve finally found a use for the tiny round plasters that every pack seems to include but no one ever has a use for. I think that’s helping to keep it clean, at least, so it should heal a little faster.

No news yet on a date for my surgery but I’m hoping it’ll be soon. On an entirely unrelated note, I’m thinking of started my own WhatCanIEat blog website. I’m not sure when or how but I’ll post more if/when it happens.

And then they cancel…

Ok, so three days ago, I was given a date for my surgery for next week. Yesterday they cancelled. As annoying as this is though, I can’t fault the hospital; cancer patients take priority and my slot was needed so I’m not that annoyed, not really. I don’t know how long it’ll now be until I have another date but at least this way I’ll have more time to get used to the idea of impending surgery.