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 18

Feeling pretty good today; I slept ok last night (it took me a while to actually get to sleep though) but because it’s Sunday, they let us sleep in a bit later than during the week. (Meaning lights on was at 8am instead of 7am).

I’ve been eating solids with no problems and my stoma is looking a little healthier now. The stitches, which gave it a sort of spider-on-its-back kind of look, are dissolving and it’s not quite as flat now. The skin around it is pretty sore but I think that’s because of all the bile that was coming out of it before. I am using my barrier cream which sends to be helping a bit.

I’m still on TPN until tomorrow evening but hopefully that’ll be the last of it. I’m not as achy around the middle as I was after my first surgery so I can walk a lot easier, however, I’m going to take it easy still incase I accidentally hernia myself.

Day 17

I slept a lot better last night which I think has helped me feel a lot better. They’ve moved me onto a light solid food diet so I’m eating low residue but in small amounts. I’m still on TPN for at least the weekend, and I’m having Forticreme yoghurt in the morning and evening.

The doctors were a bit worried because my blood pressure dropped this morning but it was because I wasn’t drinking enough. I have been drinking plenty this afternoon so they aren’t worried anymore.

I’m feeling so much better than I was last week so I’m hoping this means I can go home early next week. Fingers still crossed!

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.