Recently I asked some of the ostomy forums whether anyone would be comfortable sharing their stories and experiences with a stoma and/or IBD and the response was overwhelming! The idea behind this is to show how different people are affected and just how people have dealt with it to show the different sides of the disease and the stoma. This post has been written by Debbie.
My story starts in late 2009/early 2010. I’d started feeling generally unwell quite often, and after a few doctors trips they thought I had something called Helicobacter Pylori (a bacteria that lives in the stomach mostly harmless but can sometimes damage the stomach lining.) this resulted in a few hospital and doctors appointments for tests and medication.
By the start of Autumn they’d decided it had cleared and I still saw some doctors and a consultant and no one could figure out what was wrong, meanwhile I started feeling generally unwell a lot more, tired, sick, and in pain. I think it was around December time my consultant gave up and told us he had no idea what was wrong and didn’t know what else to do. We were left pretty hopeless, but my parents were great the whole time and never gave up. This was when things were starting to reach their worst: my weight was slowly dropping, eventually every single meal I ate wouldn’t stay down, I got weaker every single day, I was extremely tired and exhausted, and in constant pain. This just went on and on, getting worse and worse. Meanwhile doctors diagnosed me with indigestion, gallstones, eating disorders and general ‘teenage girl’ problems. I remember one morning my dad took me to hospital at 3am, throwing up, doubled over in pain, crying and looking so ill and they told me I had indigestion. Many more weeks went past with doctors visits and random trips to A&E to no avail. College was getting more and more of a struggle, I remember one time we were standing round (learning to bed bath I think) and I must have been standing for all of 3 minutes before I was both in so much pain and just too weak to stand up that I thought I was going to pass out. Looking back I have no idea how I even made it through those days at college!
By mid-March I was sitting at 6 stone, and on a Wednesday morning my dad took me to the doctors (I hated going by this point, I felt so silly every time I went and also felt totally hopeless.) Dad brought out a picture on his phone of me about a year earlier at a healthy weight, and looking healthy and not like I was at death’s door! In all those doctor and hospital visits this was the first time I felt that someone realised how sick I was and was genuinely interested. He took some bloods and although he never let on what he thought it was I left feeling hopeful (for the first time!) Two days later on the Friday we came home and out of the blue the doctor phoned, he’d got the bloodwork back and was almost sure it was Crohn’s Disease, I had to go to hospital on the Monday for some tests. I think the whole family were relieved that we might finally have some answers. Between us and our whole church family we’d been praying a whole lot! I remember that night, we all sat down to watch comic relief as it was red nose day and one of the first stories was a young girl caring for her mum with Crohn’s, the mum was bed bound, permanently catheterised and had a nasogastro tube for feeds. That was the first I realised this was serious. I pushed through that weekend and on Monday morning I arrived at the hospital, and rather naïvely I must admit – I had an overnight bag which I didn’t expect to use at all – and I thought they’d do a few tests and I’d be out by night. Wrong! My CRP (inflammation markers) were sitting in the 200’s, this should normally be below 12. I was in hospital for 8 days that time, totally miserable, being prodded and poked and getting a pile of tests and medications then Crohn’s Disease was the official diagnosis. I was totally clueless and unprepared, I had no idea what this meant for me, how would it affect my life, would it be easy to deal with or was I going to be ill forever?
One of the first medications they gave me for it (which I’m on lifelong) comes in little sachets of granules, they gave me 3 at the drug round time and I just looked at it, having no idea how to take it – at first I thought they must dissolve in your water so I pour it in and all the granules just sink to the bottom. I had to (while very embarrassed) tell the nurse I had used my medicine wrong and what was I supposed to do with it?! (Turns out you just pour the granules in your mouth and swallow them with water, simple right?!) We still laugh about that story. But, I had so many questions. I did some research on the internet but I still had very little idea about what it was entirely and what it meant for me. If I’m honest, I sometimes still wonder this. There is so little support, no one ever sat down and explained to me what it was, which is why we so desperately need more awareness, so this doesn’t just continue to happen.
The day after I was discharged I had to return to the hospital for an MRI scan, which was the worst experience ever, they gave me an NG tube (which goes up the nose, down the throat and right down into the start of the intestines. I think I cried the whole time they were putting it in, I’m such a wimp! I was back home and continuing on steroids but I just wasn’t getting better, my weight was now 5 and a half stone, I was weak, still vomiting, still doubled over in pain. I genuinely thought I was going to die, I’d go to bed and wonder if I would even wake the next morning. The only thing that got me through this time was my faith, all I could do was trust in God, that was it. I returned for the MRI results a week later on a Wednesday afternoon and the consultant said I was going to need surgery to remove some of my intestine. I turned round and my mum and dad were both nearly in tears, and when we were walking back to the car I told them both under no circumstances were they cutting anything out, I was adamant I was not going to have surgery, and 3 morphine filled days later I was being prepped for an emergency surgery, and I also received 2 blood transfusions. This hospital stay was a lot more fuzzy due to all the pain medication, although I do remember racing home when I was finally discharged to make sure I was home in time to see the royal wedding, I made it home just in time to see her get out the car and walk down the aisle. 😉
Recovering from the surgery was hard work, it’s amazing how much you use your stomach muscles for. The worst part was I couldn’t laugh, and my dad likes to make jokes!
Slowly but surely I started getting better, I starting putting on some weight (with the help of Ensure bottles which gave me the complete and utter boke), I was getting healthier and stronger, and my hair wasn’t falling out in clumps which I enjoyed! I had my life back.
The last 3 years have been a complete roller coaster ride. I’ve had a few flare ups, and more bad days than good but I’m thankful for so much, I have had amazing friends and family to get me through (and more recently a caring, thoughtful, amazing husband!) and I’m just so thankful that the doctors figured it out when they did or I wouldn’t be here to share my story!
Crohn’s has changed my life so much. I have to keep up with regular appointments with my consultant, I take up to 24 pills a day, have regular blood tests to both check my inflammation markers and to make sure my medication isn’t damaging me, random trips to A&E in the middle of the night, various tests etc. and I just have to be so much more aware of my health, what I’m eating, and knowing my limits, than I used to be. I still live with daily abdominal pain, fatigue, weakness, joint pain, sometimes hair loss, nausea, to name a few, and live in constant fear of obstructions/strictures meaning I’ll need another surgery!
I’ve been so grateful for the openness of people sharing their stories and would just like to thank Debbie for letting me share hers. You can follow Debbie’s blog here. If you’d like to share your story, send me an email at firstname.lastname@example.org