2 comments on “My Life With Crohns So Far… Part 16

  1. Hi, your journey through life so far sounds like it has been quite a tough and emotional one. Your story is hard to read and very moving. I hope you’re right about God being there for you, I don’t think that God exists in my life but I do believe in him. Sure, I was on my death bed in hospital holding my Dads hand and asking him to pray for me and yes I did eventually pull through after being given two days to live- here’s my story… I’m 29 now and I live in England, A year and a half ago (Dec 11) I started to feel very run down, anxious and depressed- so I went into my Doctors for a blood test, they found something in my blood and asked me to come in for another blood test a week later, that was on Thurs the 16th Dec, on the Saturday (18th) I rang in work telling them that I felt very ill and I couldn’t go in- I didn’t feel ill but did feel a bit run down. Little did I know what I as going to be faced with that night, the irony- God has a wicked sense of humour! I used to work out and look after myself, I had lifted some weights earlier that day and made my self a big chicken dinner. After I bent down to get my food out the oven I felt a pain in my stomach. I still ate the dinner however, then an hour later the pain became excruciating! I was rolling around on the floor curled up in the fetal position. After trying every position on my bed to try and get comfortable by about 4am the next morning I realised that I couldn’t take the pain no more so I went into a walk-in-centre and the Dr diagnosed me with possible appendicitis so they sent me to hospital. The surgeon at the hospital was horrible and cocky and assumed it was appendicitis also, he pressed on me over where the pain was occurring (the bottom right of my abdomen) and I nearly punched him in the face! He then told me to stop winging and said that it probably don’t hurt that much. I just wanted it over with I wasn’t scared, when I came round from the op I felt ok, in pain but ok, they told me that they had to take out part of my small intestine that had ruptured through severe ulceration, they said that I had Chron’s disease and asked if I had ever heard of it or shown any of the symptoms, I hadn’t even heard of this. The next day (Monday 19) I felt awful and sick I found it difficult to breathe and remember having to reach for a sick bowl but couldn’t reach it- another patient on the ward saw me struggling and kindly grabbed it for me, I vomited a litre of brown coffee like fluid? The morphine was no match for the pain that I felt, I started to develop fever that night my temp was around 39C and I felt awful. I had a urine infection also which was very painful and I couldn’t stop peeing the bed which was highly embarrassing as I quite fancied the nurse that was caring for me. On the Tuesday night they took me for a chest X-ray as they couldn’t understand why my breathing was so laboured- again I had to deal with incompetent staff there who didn’t care how much pain I was in, A few hours later around midnight I felt that same pain again that I felt when I first admitted myself to hospital, I was scared and told the nurse. They upped my morphine dosage but nothing worked. The next day they took me for a CT scan still unsure as to why my body was failing. This was unbearable to go through, they have to lay you flat and I remember screaming in pain. My fever continued to get worse even though I was on breathing apparatus, whats worse is that my machines were beeping constantly, keeping the other patients awake. I was not very popular on this ward with the Dr’s, the nurses or the patients. I knew I was dying and was making preparations to say good bye to my family. On the Thursday morning I remember asking the Sister nurse if I could go home on Sat 25 Dec to spend the day with my family and she laughed in my face and said that I was so optimistic. That day my stomach swelled up like I was pregnant I was in that much pain that I was pleading with God to make it stop even if it means throwing in the towel. Even though my family were there for me I had never felt so alone, physically I felt like I wasn’t going to make it through the night but mentally I felt like I was drowning and like I was already in Hell- had I died on the operating table??? They gave me an enema on the Thursday night to try and clear the obvious blockage, this did relieve a lot of the pain, I went to toilet three times filling three commodes. That night was the night that I asked my dad to stay by my bed cos I thought it would be the last time I saw him. And the last time I used the commode was at breakfast time which again made me even more unpopular amongst the patients. The Dr’s kept coming up to my bed scratching their heads looking at my charts and whispering. I had around 35 injections so far mostly collections of blood to try and grow an anti biotic to try and cure what was wrong with me. On the Friday after my Dad went home my sister sent me a txt message asking how I am? To which I replied ‘i’m sorry but I can’t even talk cos i’m in so much pain’ I had lost my voice and had to write things down. Then all of a sudden my machines started beeping ferociously, soon after they rushed a portable X-ray screen to my bed. My lung had collapsed and the other one was going the same way, they rushed me to the high dependancy ward and fitted a mask that was bigger than my face, my family came in to see me lying there on my death bed, temperature 39.5C, blood curdling, skin covered in rashes my teeth were black through dried up blood, my face white as a sheet. They could see the fear in my eyes and I could see it in theirs. That was when I told my Dad that I was sorry for not being the perfect son and not living to my full potential. The surgeon told me what was happening, I was going into multi organ failure and if they didn’t open me up to see what was wrong then I wouldn’t make it to Xmas. I did quietly pray to God even though he has not been evident in my life so far. I pulled through after being on life support for a day. I found out after that the stitches had come undone on the resection this meant that blood, acid and excrement had been leaking into my abdominal cavity, at a guess I would say from the Tuesday night was when they came undone. I also had developed scepticemia, pneumonia skin and urine infections. After I came round I was put on Intensive care and the sister nurse who I could not get on with that week I feel had made a special journey to my bedside and apologised to me saying ‘ I’m really sorry, none of us knew how ill you really were, she paused and said i’m so glad to see you pulled through’. It felt so good for me to hear that because from the moment I was put on that ward I didn’t feel welcome. I felt that they thought that I was a hindrance. I also developed the noro virus and was isolated in a room for 9 nine days, I had to have a drain fitted to my liver because there was no end of pus that had developed after the op. The drain fitting was up there with having an anvil fall on your head or going 5 rounds with Mike Tyson in terms of pain. I had to have a stoma bag fitted and when I saw the size of the vertical scar running from the bottom of my chest to below my belly button- I needed oxygen fast. That was the worst of what happened, I did have to go back in to hospital after being let out because I nearly died again a few days later due to my breathing. Since then I have lost a lot of my hair from the anaesthetic, the x-rays, Ct scans and never having been cut by a knife before, most of it has grown back. I have suffered a massive, massive life changing trauma, I have now had the stoma bag removed and feel a bit chirpier and look a lot healthier too. But now i’m reading in your blog that the same thing could happen in the next five years? Please tell me it isn’t so???

    • Wow. That is an amazing story! No, you shouldn’t have to go through that again in five years!

      Your disease was attacking you unmedicated for years in order to cause enough ulceration and scarring that it would tighten to the point of ripping. Your recovery was, unfortunately, exacerbated by the post surgery leak than from the disease itself.

      I’m still recovering from my latest surgery and, as it turns out, am fortunate I had the surgery in the first place. When they went in there they found that I was a prime candidate for a similar ripping and septic poisoning and, if I had not had the surgery, that it was inevitable.

      Fortunately, the medications they have now (Remicade or Humera) are much better at managing the disease. I was on Remicade for 13 years without needing another surgery. And my case was rare to need another one. My brother, who has had the disease longer than I have, has had fewer issues and fewer surgeries.

      I will pray for you and your recovery and for the journey ahead. My faith has helped me endure life with the disease. I hope you can find a similar peace. I have found that God is intertwined in our lives far more than we realize. For me, taking my brother’s advice to offer up my suffering to God to hopefully lessen the suffering of others has given value to those otherwise wasteful, painful experiences when the disease is raging. It doesn’t lessen the pain from the disease, but it transforms the worst part of it into the best part of it. As my brother said, “You’re going to suffer with it anyway. You mine as well put that suffering to good use.”

      I hope that your future health continues to improve and that your once-in-a-lifetime event is just that. Medications are getting better all the time and my quality of life with the disease has improved greatly. Sure, my torso is covered with scars, but they all tell a good story.

      May God bless you, Martin, and be with you going forward. Thank you for sharing your story.

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