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.

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.

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 26

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.

Positive vibes!

Day 23

My doctor has seen me this morning and she is happy for me to start on small portions of soft food today. I’m going to try soup and jelly later but I don’t want anything too solid yet just in case. I’ll see how I am tonight and then decide if I want to try solids tomorrow.

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.