When I returned home, I did not have a spare room to turn into a “clinical room”, so my living room was turned into a clinical room. The sight was awful, I could not escape the hospital as the huge fridge that contained bags and bags of the TPN which was placed next to my TV. Boxes of ileostomy bags were stacked on top of each other and I hated sitting in that room to see that this is now my life. Then again, sh*t happens. The first time I connected the TPN at home was upsetting to say the least, but I got to place it in a rucksack and walk around the house so it wasn’t too bad. The sh*t thing was that I still had to be connected for 12 hours so I would have to come home in the evening to connect but all I would think is that the sooner I put the weight on the quicker I can stop and the can take this PICC line out of my arm and ultimately get my bowels stapled back together.
For some reason, when I cut out fizzy drinks completely, I turned to beer and spirits. Don’t ask me why. So I was drinking beer every day with my friends but to my surprise beer seemed to be fine for my stoma. I could only baby sip drinks still as they would go straight into my bag but for some reason the beer would not make its way back out so quickly. Infact, the beer must have been getting absorbed somewhere, plus my wee was crystal clear. Every day I would think about the day I can go back to the gym and regain my beautiful muscles. As you can imagine if a hole the size of a golf ball has been made through you abdomen to allow your intenstines through, it is not going to be very strong. So lifting weights was out of the question as there was a high risk of a hernia or the bowel being pushed out further through the skin.
I would go out and start living a normal life and most people didn’t know what was happening behind the scenes but there were many times when I was out in public and thinking “what the f*ck is that smell? Oh, my bag has leaked under my top – great”. April 15th which was two weeks after being discharged from hospital, I wanted to go to the Nagar Kirtan (Vaisakhi Walk) where Sikh’s walk from their local temples to other temples and meet in the city centre during the celebrations of Vaisakhi. The distance is approximately 3 miles each way. Bare in mind, two months earlier I could only take 20 steps before I became exhausted. I thought f*ck it, I am going to do it. I did the whole 6 miles and saw many people I have not seen in a long time and nobody knew a thing. I was so proud of myself because I thought if somebody told me in February that you will walk the full Vaisakhi Walk, my response would have been: “are you f*cking stupid?”.
I was told from the outset by the doctors that they would not consider the reversal surgery until December 2017 and that is based on me reaching and maintaining 50kg and that the Crohn’s disease must be in remission. It is early May and I am weighing 47kg so I am in the realms of my normal body weight, now 50kg was so close I could taste it. At the same time I couldn’t wait until December on a “consideration”. I was desperate for the surgery. A close friend kept telling to “write off this year and look forward to next year” but I was not going to write the year off and I was going to prove I can turn things around! I’m independent and feeling full of life, yet I am leading a limited life as I could not run, swim, cycle, travel long distances. I was scared to drive because if I got into an accident, the bowels would fly out of my stomach. There was a time I went shopping and I needed to keep emptying the bag so I went into a department store 3 times over the space of an hour and I could just see the security guard watching me and I was thinking, “will you let me just suffer in peace”. I had a feeling he was going come upto me once I returned from the toilets so I was going to take a detour but he was waiting for me and asked “what do you have under your top as you keep having your hand there?!”. So I lifted me top and said “I have an ileostomy bag so piss off and leave me alone”.
I had my diet all planned out for post surgery and I would pray every day for the surgery as it was holding me back from my goal of being a stronger, better and healthier person. To my surprise and disgust, a blessing in disguise was about to happen. On the 8th of May, I woke up and went to change my ileostomy bag like I would every morning to find that 6 inches of my bowel had fallen out of my stomach! It was dangling down and touching my groin. I was frightened and did not know what to do as I just stared out my bowel in shock. I called the Stoma Nurse who would regularly visit me but she wasn’t free until the 12th of May. I spent five days trying to manage the dangling bowel and it takes a lot for me to cringe or be disgusted but this had me on the verge of tears, seeing a bright red bowel which was swollen and purple at the end. The Stoma Nurse came around and instantly she looked worried and concerned which did not fill me with confidence. She needed a second opinion so she called the hospital and arranged for me to go in.
I went back into hospital for third time after only 6 weeks of freedom and prior to that I spent 5 weeks in the place. I spent 6 hours waiting to be seen by a surgeon who was wreckless and by wreckless I mean when I saw him he just was casually squeezing, moving and lifting up my bowels. I was just squirming around like a worm because it was like torture. He gave me three options: remove (the 6 inches that are dangling), refashion (have surgery to tuck it back into my stomach) or reverse (the surgery I have been praying for). They told me that I have to stay the night and will decide on the procedure tomorrow.