My story so far……
Growing up I was aware of Crohn’s Disease, as my mum suffered with it. I remember the hospital visits and the rushing to the toilet. A simple shopping trip would always end with her needing to find the toilet urgently.
Fast forward to 2002, I was suffering with tummy pains, needing the toilet urgently, going off my food. I went to the doctors several times and was prescribed Mebervine. This didn’t seem to work, and I was still rushing to the toilet and having pain.
Eventually I was referred to the Gastro Clinic. I saw Dr Drake who assured me that just because my mum had Crohn’s Disease, it didn’t mean I had it. He said for me to have a routine Barium Meal Test as that would determine that I didn’t have it. I had the procedure done at Chorley Hospital in September 2004. In October 2004 I had a letter to return to the hospital for an appointment with the Gastro Clinic in November. November came and I went to the appointment, low and behold the scans showed I did indeed have Crohn’s Disease. The consultant was very shocked at the results. Crohn’s Disease can be Genetic but isn’t hereditary.
I was given Pentasa, steroids and B12 injections. After a few weeks I was starting to feel better, although I still had the urgency to go to the toilet. As time went on, I was managing better and better. Even got married and went on honeymoon without a hitch.
I had my first daughter, Emma in September 2006. During the pregnancy I had morning sickness but nothing else and my Crohn’s seemed to be the best it had ever been. I started to see the IBD nurse instead of the consultant. She thought it would be a good idea to have a routine colonoscopy just to check all was ok. In December 2006 I had the procedure done. The bowel prep made me very sick as well as clearing my bowel. The procedure seemed to go ok although a little uncomfortable.
In April 2007, I began getting the urgency back and then went to the other extreme of not being able to go. I contacted my IBD nurse who said a course of steroids should sort me out as I was experiencing a flare. We went on a family holiday to Cyprus, but while we were away, the pain became worse, and it felt like I had pulled my tummy. I went to the doctors who said I had pulled muscles in my tummy which is why I was in pain. Little did I know this wasn’t the case.
By the end of May 2007, I was becoming very unwell. I was walking crouched over and kept coming over all hot. Fortunately, my mum had an appointment at the Gastro Clinic, so I went along with her. Whilst there I was rushed to a bed in Brindle Ward and was told I would be seen by Dr Drake. I was given morphine for the pain and had lots of blood tests. Over the following week I was prodded and poked and had lots of test. My last test was an ultrasound on my tummy on the Friday. Friday night I was visited by a surgeon who said he would be operating the following morning as I had a narrowing in my small intestine and a large abscess. I was devastated and couldn’t get my head round what was happening.
The following morning, I was taken to theatre and underwent an 8-hour operation. When I came to, I was in the surgical ward, with bags and tubes galore. I had a tube for my abscess draining into a bag, another 3 tubes draining fluid from my tummy, two ostomy bags and a very large scar. I was on oxygen and an NG tube.
I didn’t eat for several days, and when I did eat a little, I was sick. I felt very low and was missing my baby and family. After about a week, the tubes and drains were out, and I was walking around a little. I still couldn’t come to terms with the stomas that I had been left with. Eventually a Stoma Nurse came to visit. She was astounded that no one had been to see me before. She went through everything with me, how to change the bag, emptying it and generally caring for myself. I still had stiches around my stoma, which had gone tight, so she removed these for me and came to see me daily from then on.
After nearly 3 weeks of being in hospital I was looking forward to going to home. Unfortunately, this was not to be. My abscess came back. I had to go down to the CT Scanner and have another drain put in whilst I was awake. Ouch, or words to that effect!!! This drain was in for another two weeks and finally I was able to go home. I was home for a week when the abscess came back. I was taken into Preston Hospital where I had another drain fitted. Then I was transferred to Chorley Hospital. I spent a further 2 weeks in hospital so that the doctors could make sure the abscess had completely gone. This was a long and painful journey.
I was lucky that I had my mum to come and help me care for my baby whilst my husband was at work and to help me as I still wasn’t very mobile and worried about all my scars and Stoma. I had been given smaller closed bags for my mucus fistula but couldn’t get the main stoma to stop leaking. It seemed each time I moved to picked Emma up, I ended up with it leaking. I started pushing to have the stoma reversed with the surgeon. As the weeks went by and trying different bags and paste, we finally cracked it and I went a whole day without a leak. I was ecstatic!! With a few more tweaks, I was able to go 2 days without a leak. This really helped with my confidence, and I was able to go out and start enjoying life again. I went back to work after being off for nearly 5 months. Life was back to my new normal.
I was still pushing to have a reversal, as although the leaks had become minimal, I still wasn’t happy with it. Finally, I got a date for my reversal. February 2008. I was over the moon. By the time I had my reversal I was healthy and back to eating normally. I woke from the operation and felt like I had been hit by a bus. My tummy started to feel sore, I had twitchy legs and the urgency for the toilet was back. My sore tummy was an infection in my scar. Once this was opened and drained, I started to feel better again. I spent just 2 weeks in hospital before being allowed home. I spent 6 weeks at home recovering and getting used to the urgency I was feeling again to go to the toilet. I was told that as the days/weeks went on, this would lessen. It didn’t seem to, so I was given medication to slow it down.
Up until May 2020, I had managed to keep myself out of being an inpatient in hospital with various Biologic drugs, given either by infusion or injection. In September 2020 I started to suffer with pain again in my tummy. Now I had always had some sort of pain since my reversal, but I could tell this was getting worse. October 2020, I started taking oral steroids, Budesonide. These seemed to work for a while. By February 2021, I still had pain so was given prednisolone in a hefty dose. I started to feel fantastic again, well until they started dropping the dose. Each time the dose dropped, I seemed to get worse. I was sent for a colonoscopy. Again, the bowel prep made me unwell. After the colonoscopy the medical staff came to take to me. I had a narrowing in my small bowel again and it was all very inflamed. He said he would contact my consultant to discuss the way forward. I was kept on the steroids for this time.
I seemed to be getting worse as each day went by. I called the iBD nurses and said I was struggling and in a lot of pain. They contacted Dr Drake. Within minutes the nurses had called me back and told me to go straight to MAU in Chorley and to take an overnight bag. Dr Drake had seen my results and I needed IV Steroids to help calm this down. I ended up in hospital for 5 days, which 3 were spent having IV Steroids 4 times a day, then back onto oral steroids. I did feel better after the IV Steroids, even though I had the definite moon face and could eat for England! I was put on a no fibre diet to give my bowels a rest. Whilst I was in hospital Dr Drake said he would speak with the surgeons to see what they thought. I was put on yet another Biologic and was told this was my last chance, the next step was surgery. I had this injection twice before I saw the surgeon, Mr Bhowmick at the very start of September. He advised surgery was the way forward and would get me booked in as soon as he could. He explained that because I had been on a hefty dose of Steroids for a year, the chances were I would end up with another Stoma as my healing would be compromised due to the effect the Steroids have on your body. I explained my concerns over last time. Mr Bhowmick introduced me to Diane, one of the Stoma Nurses. She said she would go through everything with me and discussed on the day of the operation the best position to site the stoma to help eliminate leaks.
I had my operation on Tuesday 5th October which took 8 hours. I had a bowel resection and a stoma formed. Mr Bhowmick said he had to remove a substantial amount of small intestine and I now only had 128cm left, where normally you have approx. 600cm. Mr Bhowmick commented that had I not had the scheduled surgery, the next flare, I would have had my operation as an emergency.
Thankfully the surgery went to plan. I was sat out in the chair the day after surgery, and then eating the following day. By the Saturday, all wires and drains were out and I was free to move about. Diane had been coming each morning and changing my bag, on the Saturday because I could move about, I decided to change the bag on my own. Granted it took a while and I had to sit down halfway through, but I managed it. I felt so proud of myself as it had taken me weeks to even look at my last stoma. I went home a week after my operation.
The first thing my girls wanted was a massive hug when I walked through the door. My youngest daughter, Jessica was keen to see all my war wounds including my stoma. Since then, I have never hidden Doris (Jessica named it!!) from the girls, or my husband, Neil. I have even had to get Emma to assist me with some changes when Doris hasn’t behaved itself!!
Doris is now just part of our everyday life. I am healthier and stronger now than ever before.
Doris is here to stay a while!
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