Let’s Be OstoMATES – Jen’s Story

Jen's Story

This story has been in the to post pile for awhile and every time I read it I cry. Jen thank you so much for your story and how brave you are for being so honest. In the photo below Jen is on the left.

Jen talks about her stoma

So, my story with inflammatory bowel disease….I’ve had achy joints and rheumatoid problems for as long as I can remember. When I was 6 I remember crying because my legs hurt me so much. At 20 I was diagnosed with Ulcerative Colitis, after months of going to the doctors with what I now know are classic UC symptom – everything from mouth ulcers, joint pain, Iritis, not to mention the constant toilet visits and blood loss. I was diagnosed in June 1998, and I was rushed in to hospital just before Christmas the same year after becoming drained from loss of blood and exhausted with malnutrition. For 4 weeks I was in the medical ward being pumped with what felt like a million drugs and pain killers, and all the while the colitis got worse. I had almost daily x-rays and endoscopes. I remember sitting on my bed on Christmas day in an empty ward having soup for Christmas dinner and crying my eyes out.

After 4 weeks I really went downhill and my colon started to rupture. I was transferred to a surgical ward. By this time I passing more blood than stools, even the nurses were horrified. My belly was so bloated that one of the nurses joked ‘are you sure you’re not pregnant?’ I went to theatre as an emergency on a Tuesday morning, the surgeon said it was a ‘small operation’ and said that the ‘little bag’ would be temporary for a few weeks.

I woke up in intensive care, and in a semi conscious state I pulled out the nasal gastric tube and nearly dislodged the central line in panic. All I remember is pain, literally screaming in agony. As it turned out, the epidural has dislodged and the morphine was just spilling on to the bed. And then it got worse. I was told the surgery had taken 6 hours and I’d had 2 blood transfusions.
I came round to find my surgeon standing over me. These were his exact words…’when we opened you up we found something’. I thought he meant cancer or something like that, but then he said ‘we found a baby’. He then went on to give me loads of information, including how the baby wouldn’t live because of all the drugs and x-rays. My whole world fell apart; I couldn’t contemplate telling my partner so the surgeon did. When Stuart came to see me I just cried and cried, and when I told my parents my Dad looked so happy, and when I told him the baby wouldn’t live he looked absolutely devastated. Late one night was wheeled off to have an ultrasound scan; I said I didn’t want to see the baby, and I looked away. I saw the reflection of my baby on the screen opposite the bed, and when Stuart looked at me he was crying. I had told the nurses before every x-rays, scan and treatment that my periods were not regular and my last one had been in June that year, and at no point did anyone suggest a pregnancy test. After 4 days in ITU I was sent to a surgical ward to recover, but 3 days later my small intestine twisted and I was sent back to theatre. Before I was wheeled off the gastrointestinal surgeon and the gynaecology surgeon stood at the foot of my bed and told me ‘we need to get that out of you’.

Again, I came round in intensive care, with a blood transfusion going through, and again I screamed in agony because the epidural had come out of my back. The baby was gone, and that was the last time anyone ever mentioned it. I went to theatre again when the wound got infected and I had to be ‘re-stitched’. There was MRSA and the healing took an age, even after I was discharged (9 weeks after I was admitted) the district nurse had to come and pack the wound daily. I left hospital weighing 5 and ½ stone, and I was so weak I couldn’t walk more than 5 paces without collapsing.

Life with the ileostomy was miserable, and my partner and I moved in with my parents to help my recovery. I was so conscious of eating anything remotely fibrous or gassy. It took 8 months to regain the weight because I was scared to eat, but the depression never lifted and grew more withdrawn every day. I got a part time job and I called the surgeon almost daily begging him to reverse the ileostomy and form a j-pouch. Finally in January 2000 the reversal was performed. The morning of the surgery I sat in the bath and told my stoma ‘I hate you and you’ll be gone today’. I woke up in ITU again, after a rough surgery of 8 hours and another blood transfusion. However, this time I was back on the ward in 48 hours although I did develop MRSA again so healing was traumatic.

Stuart and I got a house, we got married and we were happy, but every day I thought of the baby I’d seen reflected on the screen and I mourned its loss. No one ever mentioned it, I believed that no one cared and the mental pain was agony. In August 2000 the j-pouch began to break down. There was so much colitis in the rectal stump, and they kept scraping it out but the pain going to the toilet was excruciating. I passed out one time with the pain. I was admitted back in to hospital in January 2001 and I asked them to perform a permanent ileostomy with removal of the rectum. The surgery was done by Mr Vickery in Musgrove Park Hospital, and this time there was no ITU, no MRSA and only 10 days in hospital. Mr V told me that the j-pouch should never have been formed as my body was still being given ravaged by inflammatory bowel disease. He explained that all the other symptoms I was suffering were all part of UC and would be with me forever. That sounds as though it would be the worst thing I could have heard, but it was good to hear the truth; it felt I could finally start to move on. It took years to accept the stoma, but 20 years later I believe it’s the best decision I ever made. I have great quality of life now that I would never have had before. I went back to work, got promoted and lived my life. Sadly Stuart and I didn’t make it as a couple, looking back I have never forgiven myself for losing the baby, although my brain tells me that there was nothing I could have done.

4 years ago my little brother was diagnosed with UC, and whereas my illness was acute and violent, his was slow burning and agonising. In March 2013 he was admitted and told his only option was an ileostomy. I was a wreck but I was determined to be there and give him the support I never had. He was offered the reversal but he refused as he had seen what it did to me. There was so much colitis left in his rectal stump that a j-pouch would never have worked. He even had Mr Vickery as his surgeon.
So, I now have a new life. I’ve been diagnosed with Fybromyalgia , and I have accepted that I’ll never be the healthiest person on the planet, but I’m alive and enjoying life and I don’t take that for granted. I’m sensible with my diet and I’ll eat almost anything (albeit in small quantities!) It’s strange having brother to talk to about the latest ileostomy products and suchlike, but it’s good to have someone else in the stoma world to talk to, and he calls me his hero for being there when his world fell apart. He and his wife are expecting a baby girl in January, he and I both have full time jobs and live life to the fullest, and we are living proof that an ileostomy isn’t the end of the world; it’s a brand new beginning!