Hi I am Lisa I live in Cornwall in the UK I am 49 years old happily married to my ginger spanner monkey, with a 26 year old daughter who is my beautiful miracle girl. I have lived with an Ostomy for 30 years & Inflammatory Bowel Disease for over 35 years. The idea of me setting up this site is to offer positive information and knowledge and to share my life experiences with you. I am hoping that I will be able to make people aware that you really aren’t alone in the journey that you are taking or that you have taken. It takes a long time to accept health issues both physically & mentally hopefully this site will make us accept who we are & rejoice in the fact that we are still here.
WITH THE POSITIVE THERE IS GENERALLY A NEGATIVE
In 1989 I was a 15 year old teenage girl living in a boarding school I had just returned from the summer holiday to start the final year of school, the 5th year if you are in my age group, Year 11 these days. I was always a small girl under developed with a bad perm & big NHS glasses & a bit of a nerd.(Which is now considered cool since The Big Bang Theory)
I had friends but I really didn’t like being at a boarding school however two of my younger brothers were also at the same school so we got to see each other. During the end of the summer holidays in 89 I went back to school with an upset tummy. I just ignored this put it down to a bug and got on with the final year. That bug never went away!!
I started to experience severe stomach pains & visiting the loo over & over again. Still in my head it was just a bug even though my body was saying Lisa get to the Doctor. The pain was unbearable the blood loss became severe, my weight plummeted, I was tired, pale and exhausted, the diarrhoea was continuous eventually those visits to the toilet became difficult I just couldn’t make it there. I spent so much time cleaning & washing my clothes. Usually in the early hours of the AM when all the boarders were sleeping. It was still something I couldn’t tell anyone, this 3 month bug was going to go away eventually!!
The nurses at school started to get concerned & began to weigh me weekly. Still my weight continued to plummet and I was looking really sick. Eventually the hospital sister said “Lisa is there something that you are not telling us” they thought I had an eating disorder. It was time for me to tell them I remember it quite clearly. I said “I have had continuous pain for months, sickness, blood loss & diarrhoea, I can’t make it to the loo”. I was admitted into hospital that day & my parents were called.
To be honest I was so sick at this time my memories are probably jumbled I remember my brothers visiting me from our school, the teachers bringing me letters from my school mates. If you have gone through this or are going through the same you will know that the tests are endless. Biopsies, bloods, stool samples, scans, barium meals, barium enemas, colonoscopy, endoscopy. To many tests to mention. I was transferred to Addenbrookes Hospital I was diagnosed with Ulcerative Colitis & placed on steroids and E108 initially. The disease was quite progressed surgery was the best course of action. A proctocolectomy was planned. There was very little information readily available about bowel disease it was usually associated with the elderly. We didn’t have the internet or social media a library was Google. We are so fortunate now to have such information widely available.
What is a Proctocolectomy?
A restorative total proctocolectomy with ileal-anal pouch surgery also known as a J pouch (Parks Pouch) anastomosis (IPAA) is the removal of the large intestine (Colon) and must of the rectum. In my case this was done in two stages the colon was removed a Stoma was fashioned and I wore a bag for a couple of months whilst my body got healthier and ready for the next surgery.
What is a Stoma?
A Stoma is any opening (Or mouth) that has been fashioned on the body by an organ,the stomach, the esophagus, the duodenum, colon, ileum, ureter, bladder and so on. I have had a gastrostomy with a tube inserted into my stomach (that is now removed) I have a permanent Stoma an Ileostomy which has been made using my small bowel.
Back to 1989
After the first surgery this was a really difficult time for me the constant pain was gone the accidents were gone the fear was gone I was getting better, however the feelings that had arisen from everything that was happening to me were still there. I keep things to myself I struggled with the way my body looked. I’m a strong person so even then being 15 with a 10 inch scar on my stomach & a bag. I just cracked on dealt with this in my own way & decided to “suck it up soldier” I couldn’t wait for the second surgery to be normal again. We are all different I have never met anyone that has dealt with this like me so my advice is to share your feelings talk to your loved ones, see a councillor if you need to. Not everyone can deal with a life changing experience in the way that they want. In hind sight now I think I probably should have spoken to someone. It wouldn’t have taken such a long time to share my story as I am now.
By 1990 I finally had my complete surgery for the J pouch it was a 7 hour operation. At this time I was told I would have continuous diarrhoea for the rest of my life but I would have control & the stoma was no longer there. I was also told there was a chance I would probably not be able to have children. Leaving the hospital and getting back to health happened slowly but surely.
I had missed my final exams and the majority of the last year of school. It was planned that I would resit the last year of school. I was to be sent back to boarding school I was devastated about this.
I wanted to do retakes at college but it wasn’t to be. All my school mates had left I was back in a school with bad memories and no friends. Still I sucked it up & carried on I was the odd nerdy kid who left school to have surgeries but still had bowel issues. I still had leaks at night gave myself a colifoam enema every night & wore a towel to bed.
Naturally bullying started that it is what kids do they bully someone who is different. I tried my best to ignore them keep out of there way but boarding with the same bully’s isn’t so easy. I remember asking a house parent for a towel she asked one of the other girls for one for me. There was a giggle and a girl in the next dorm shouted “she needs it because she shit’s herself at night” this is not a story to make you feel sorry for me this is just a story to again make sure you speak to someone.
I dealt with this quite well and counted the days down for leavers day. The bullying did stop all most at the end of the year when I finally cracked and I thumped a girl. This is not what you should do we have so many support groups these days and so much awareness. I was accepted for 6th form which was a bit of accolade in a private school I was a good student but I refused to stay. As soon as leavers day came I packed my suitcase and jumped on the train.
In 1991 I started a course to train as a nurse at the local hospital ironically working on the ward that had patients with bowel & bladder problems. I moved out of home continued with my course lived with a group of mates and life became normal. Towards the end of the first year of my studies I began to get ill again. All the same symptoms as before I had my surgeries, blood loss, weight loss, sickness, uncontrollable diarrhoea and severe abdominal pain. Eventually I got admitted to hospital on the same ward I worked on. This was when I had to give up my nursing course by this time I was really sick. I had more tests, more biopsies all of the tests that I had before, but more extensive I was on TPN I really was going downhill. The symptoms that I had were similar to Pouchitis but after several tests I was then re-diagnosed with Crohn’s Disease this can occasionally happen to certain patients where the chronic pouch inflammation is due to a misdiagnosis.
This was the time when I asked the consultant to operate on me & remove the diseased bowel and rectum and give me a Total Colectomy with Ileostomy. A total colectomy is the removal of most of the small bowel as well as the rectum and the formation of a permanent Stoma. My health was really bad by then that operating on me at that time was not a viable option. The hospital discharged me to my parents home my parents contacted St Marks Specialist Bowel Hospital in London. I visited consultants there they did more tests on me & I was told that they would do the surgery.
When i was 19 years old I had a Total Colectomy and Billy the Ileostomy was formed. I have only around a metre to two metres of small bowel left no colon & no rectum. The surgery was not without complications it took along time to get well I had a Gastrostomy fitted I still ate but I had extra food(pepti 2000) going through the Gastrostomy at night to increase my weight.
I eventually left my parents home got my own place and had the Gastrostomy removed after about a year. I had to give up dairy as I wasn’t producing the enzyme Lactase which breaks down Lactose. I was able to go back onto dairy within a year. I got better I started to live a normal life, worked, went out partying enjoyed myself. Coming to terms with the new me was easier the second time around. I have had many other health issues over the years, kidney surgery. Epilepsy which is now controlled. Having experienced all the past health problems has helped me to be strong and to deal with whatever comes my way particularly when it comes to my health. I have a great outlook on life and after all these years I finally accept that this is me. At 23 years old I gave birth to my beautiful girl she is my miracle baby. I have an amazing husband and an awesome daughter. So in short Billy the illy saved my life!!