Some of you may have heard about Crohn’s disease, but how many of you have heard about Ulcerative Colitis? Both Ulcerative Colitis and Crohn’s disease are forms of IBD (Inflammatory Bowel Disease) and are long-term (chronic) conditions.
Ulcerative Colitis only affects the colon (large intestine), while Crohn’s disease can affect all of the digestive system, from the mouth to the anus.
Crohnsandcolitis state “Ulcerative Colitis is a chronic condition. This means that it is ongoing and life-long, although you may have periods of good health (remission), as well as times when symptoms are more active (relapses or flare-ups).”
IBD affects more than 300,000 in the UK and remains a hidden disease. IBD is not a visible disease, on the outside, you look relatively healthy, but on the inside, you are in absolute agony, you’re tired, you experience constant diarrhea often mixed with blood, pus and mucus, loss of weight, anemia, mouth ulcers and some may experience temperatures.
I was diagnosed at the age of 20. For many years prior to my diagnosis, I was told I had IBS (irritable bowel syndrome) but nothing helped, and was told this was often the case and its something I have to learn to live with.
November 2008 (Aged 20) I started to feel unwell, vomiting, diarrhea, bloating. I couldn’t even hold sips of water in without needing to throw up or go to the toilet. The Dr said I had a bad case of gastroenteritis, and to ride it out. 1 week later and it was no better, I was beginning to lose weight, I slept on my parent’s sofa because my stomach hurt laying down- thankfully I was still living at home back then.
My dad took me to the out of hours one evening, and the Dr thought I had dysentery. I was prescribed codeine to try and block me up and slow things down. 2 weeks later, I had lost 2 stone, and was much much worse. The Dr had to visit me at home, as I was so weak I struggled to walk.
It was then the doctor dialed 999 and sent for an ambulance. I was blue lighted to the hospital and sent for an immediate endoscopy. I had a 6cm hole in my colon. I was diagnosed with Ulcerative Colitis. The consultant said it was like world war 3 had gone off in my colon, everything was red, angry inflamed and it had perforated. The surgical team came to see me to discuss the best course of action. I was given a high dose of steroids to try and heal the hole- luckily it worked. If it hadn’t I could have lost my colon. I stayed in the hospital for 1 week. I received 10 bags of saline, as I was so dehydrated, and I slowly started to eat again. I was put on calorie shakes to help me gain all the weight that I had lost, and I was started on Ciclosporin (immunosuppressant drug) and Mezavant XL (mesalazine) which is used to reduce inflammation.
It took me 4 months to gain back my 2 stone and to get my head around my new regime of medication. I needed regular blood tests to make sure the drugs weren’t causing any potential issues with my kidneys and liver. It was a long road to full recovery. Everything was going well, until February 2010, where I experienced my first flare up since diagnosis. I was away from home on a weekend break with my boyfriend (now husband 🙂 ) in Cornwall. I spent most of my time on the toilet (20-30x a day). I phoned my consultant who wanted to see me urgently on Monday. Monday couldn’t come sooner when I saw my consultant he took one look at me and sent me for an endoscopy and it confirmed his suspicions of a nasty flare up. I was admitted to hospital then and there. This time I was in the hospital for a month (the whole of March).
I was put on more steroids and Ciclosporin via IV syringe pump. I had daily blood tests, weekly scans it was awful. My boyfriend came to see me every single day and it was the only thing that kept me going. I think most men would of run a mile, knowing the girlfriend had a bowel disease.
After what seemed like the longest ever month, I was finally allowed home. Again, it was a long road to recovery. I trialed many other maintenance drugs. I tried Pentasa, enemas, Asacol, Azathioprine- all of which I had side effects with, so I stayed on Mezavant and Ciclosporin.
Skip forward to January 2011, and my boyfriend and I had the biggest shock yet. I found out I was pregnant (5 weeks pregnant). I took the pill religiously, so I didn’t understand. I was taking steroids at the time, and being 23 I stupidly didn’t read the instructions, but no one told me either that taking steroids could lessen the effects of the contraceptive pill. I made an emergency appointment to see the IBD team, my nurse explained to me that being on steroids and immunosuppressants during pregnancy is not ideal, but if I don’t take them and relapse I would be putting myself and the baby at risk. It was a matter of keeping me healthy to save my baby.
Luckily my pregnancy went smoothly. I suffered the usual morning sickness I had to take my medication in the afternoon during this period as I couldn’t afford to take it then be sick.
I carried very small and only gained 6lb during the entire pregnancy. Our daughter arrived and weighed in at 6lb 3oz. I obviously had lost a lot of weight during the pregnancy. Our daughter was also breech from 22 weeks, and she did not turn. I underwent an ECV, which failed. I was booked in for a planned caesarean section for 39+5 days. Unfortunately, our daughter did not want to stay inside, and she tried to make a swift exit and I ended up having an emergency ceasarean at 37+2 days.
I had to stay in the hospital for 6 days, mainly due to the pain I was in. The consultant said I wasn’t allowed the usual pain relief offered to women after this procedure because it would interact with the drugs I was on for my colitis. So I was managing on very mild pain relief. I was also told not to breastfeed because of the crossover of drugs into the breast milk. I did not challenge them.
Once home everything settled down, and I adjusted to being a mum. I was warned I may experience a flare may happen because the amount of stress my body had been under. Stress is a common trigger for a flare/attack/relapse.
It wasn’t until our daughter was 6 months old, I experienced yet another relapse. I was warned if I didn’t get it under control I was at risk of bowel surgery, it was a pretty horrific time. Surgery was the last thing I wanted when I was supposed to be looking after my young daughter. Fortunately, steroids were my saving grace again. My family encouraged me to seek a second opinion from another specialist because there had to be other drugs out there for me to try before I had to go under the knife. We found an amazing consultant in Southampton, who sent me for an endoscopy to see the state of my colon/bowel, and he recommended I went onto Mercaptopurine. Now if you’ve ever read the side effects of these drugs they make for a very scary read and make you question taking them at all.
Wikipedia state Mercaptopurine “is a medication used for cancer and autoimmune diseases. Specifically, it is used to treat acute lymphocytic leukemia , chronic myeloid leukemia , Crohn’s disease, and ulcerative colitis.”
I am still on Mercaptopurine 6 years later. It has been my wonder drug. I still have to have 3 monthly blood tests, to check my red/white blood cells, and check my liver and kidneys are functioning how they should be.
In January 2015 we found out I was pregnant again. It was a very different pregnancy to my first pregnancy. Since my first pregnancy we had relocated to a rural area, and the midwives at the local hospital were not very clued up on IBD in general and the effects it could have on pregnancy. I was tutted at for being on my medication.
I was told again I could not breastfeed again due to the crossover of my drugs and breastmilk, I also was told I would have to undergo another caesarean because the risk of tearing if I tried naturally would potentially jeopardise any future bowel surgery I may require.
I was fed up, and didn’t have much faith in the midwives or hospital anymore. My husband and I began to search for private midwives, and low and behold it is actually a thing. We came across Wessex Independent Midwives. We booked an initial consultation. It was the best decision we have ever made.
My independent midwife was amazing. She made my pregnancy so much more enjoyable, she came with me to scans, and appointments when my husband couldn’t due to work commitments. She knew some very experienced professionals in the field and sought their advice on my condition. She spoke to a leading pharmacist, on the effects on Mercaptopurine and breast milk, and I was given the green light to breastfeed, she booked me into see a brilliant obstetrician who said another caesarean section would actually jeopardise future bowel surgery more than trying naturally. So I was given the green light to try a natural birth. I was overjoyed.
I gave birth at 38 weeks, a successful VBAC and my amazing midwife delivered our daughter. She fought so hard for me to have the birth that I wanted, and without her, I don’t think that would have happened. I’ve never felt safer. I felt amazing that I gave birth and furthermore I could breastfeed.
Both our daughters are happy and healthy and show no signs of me being on immunosuppressants throughout each pregnancy. Please do not take this as medical advice and seek professional advice. What worked for me, may not work for you.
I do still get bad days, I get very tired on top of the usual tiredness that all parents experience, I suffer from dry skin, and have brittle nails. I struggle to gain weight, which for some people is a good thing but for me, I notice fairly quickly if I start to lose it. I know I’m at high risk of another relapse and future bowel surgery, and I face a lifetime of constant medication. I’m ok with that now. I guess having lived with IBD for nearly 10 years, I’ve learned there are far worse things that could happen.
FEATURED IMAGE: CROHNSANDCOLITISUK