Introduction to Victoria:
24 year old, from England. Diagnosed with ulcerative colitis 3 years ago. looks after 2 lovely little daughters whilst boyfriend works away, studying to be a teacher.
My Colitis Story:
I was diagnosed with UC the day before my 21st birthday, after suffering months of symptoms and having every other possible diagnosis suggested, finally discovered it was colitis after a colonoscopy after my mam got so worried she took me to a private hospital. I like many others had never heard of UC before, but was just relieved i could put a name to what was going on and finally get some medical help. I already had a 3 year old little girl and had been perfectly healthy prior to the colitis and had a normal pregnancy with her.
I received steroids which seemed to help but after a few months of being well again, i fell pregnant (not planned) with my second baby, the doctor said the colitis shouldn’t affect the pregnancy and many women who have colitis have trouble free pregnancies and not to worry about it. I began to feel unwell again at about 3/4 months, and after a trip to A&E after a few weeks of severe diareaah, bleeding and sickness, i ended up in hospital for the next four months of my pregnancy with a full blown flare up, i lost a lot of weight and the steroids didn’t have any effect this time, I tried them intravenously but as soon as they stopped it flared up again, the doctor suggested i have an emergency c section at 28 weeks so i could have an operation to remove my colon but i refused as
i did not want to have my baby so prematurely for obvious reasons. i had a 3 day cyclosporin drip and continued to take it orally for the rest of my pregnancy, the side effects were awful, and my unborn baby was checked daily by the midwives, i had a few scares and i knew the baby was small i prayed it would be born healthy after all the stress, weight loss and medication. My stay at hospital was terrible, I was bed bound on either medication or fluid drips for most of the time, on a ward for Gastro patients, which meant I shared a room with 5 other patients mainly alchoholics, people who have overdosed, it was scary to say the least, and pretty disgusting at times(I won’t go into detail!) I did meet a couple of people with UC and this was the first time I’d had the chance to talk to someone in the same situation and was nice to know there are others going through the same thing. I went home for a month at 7 months pregnant, I was very weak and tired and still quite unwell, but I had a baby to prepare for and hadn’t done anything as yet, I’d missed my eldest daughter like crazy, she had been looked after by my mam (I don’t know what I would do without her) and visited me every day in hospital. The first job on the to do list was to find somewhere to live, as I was still living at home with my mam. Me and my boyfriend got an apartment over the road from my mam, and got more or less everything we needed for our new arrival in one shopping trip, who needs 9 months to prepare?! I was worried about the labour, I’d opted for a natural delivery as possible as I already felt guilty about the massive amounts of stress and meds I’d had when I was pregnant and I just wanted my baby out to check she was ok. I was still underweight and having colitis symptoms and we knew the baby was small because of this so I was induced at 36 weeks and after an easy quick 2 hour labour with no pain relief gave birth to a perfectly healthy but small baby girl, Ava, 4lb 3oz. My colitis flared really badly up after she was born again for about 2 months and i started steroids again. I was warned this may happen as any change or stress to the body can make cause it, I wanted to be out of hospital but had to stay a week to check me and Ava were ok. Luckily this time I had my own room with my own bathroom on the maternity ward so it wasn’t nearly as bad as my previous stay. The nurses helped me with the feeds when I was in the bathroom and I worried how I would cope at home on my own with a new born, a four year old about to start school and me spending most of my time running to the toilet. I don’t know how I did do it, just a case of having to and my amazing mam helping me out, the symptoms eased off after about 3 months and I managed to get into a routine, to be honest now those first 3 months are all abit of a blur, I was so tired with night feeds and going to the loo every half an hour during the night. and i still have on-going problems with flare ups, still haven’t had the op and putting it off as long as possible although sometimes i feel like saying just do it and get it over with, I’ve had some degree of symptoms nearly every day for the past 3 years and wonder how much more i can take, but Ava is now a happy, cheeky healthy 17 month old and my happy healthy little girls keep me going and don’t give me much time to think too much about it!
In no way do I want to put anyone with UC off having a baby, for fear of being unwell, but speaking from experience, I would definitely make sure you do everything you can to ensure your pregnancy is planned and you are medically well enough, and on the right medication prior to getting pregnant, talk to your doctor first and if at all you feel a flare up coming on contact your doctor straight away as there is limited options to control it once it flares up, as you can’t have certain medication or surgery whilst pregnant, I know lots of ladies with colitis have problem free pregnancies, but just to reduce the risk of ending up hospitalized and having to deal with a new born and being unwell.
I’m often given steroids when my colitis flares up, i find these don’t get rid of the symptoms but usually help make them less severe, however usually find once the course has finished they worsen again.
I took cyclosporin whilst pregnant which didn’t affect my unborn baby and helped the symptoms but the side effects were pretty bad.
I know take azathioprine which isn’t working very well as I’ve had a few bad flare ups lately, so interested to see what we will try next? whatever it is hope it works as had a bad couple of years since being diagnosed.
written by Victoria
submitted in the Colitis Venting Area