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Coping with a Colitis Flare Up During Pregnancy

Victoria's Colitis Secret

Victoria with her kid

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

colitis children

the kids

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.

Colitis Medications:
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




9 Responses to Coping with a Colitis Flare Up During Pregnancy

  1. Adam
    Adam January 16, 2012 at 10:08 am #

    Hi Victoria,
    Here is a study conducted about IBD and Pregnancy that might be interesting for you and others to read:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3122257/?tool=pubmed

  2. pernita January 16, 2012 at 10:17 pm #

    Hi Victoria,
    i am 38 year old woman from india , i have had u.c from last 3 years. i got two daughters aged 13 and 8. i can understand what you are going through. trust me when i say that you are one really brave woman to take care of so small kids with u.c flare ups.i was sick and tired all the time as i could,t take care of my kids the way i really wanted to. help from relations was next to nil. i tried to be brave but my body gave up on me that used to upset me mentally .last may i was told by my G.I that i would die if my intestines rapture , that called for emergency surgery(i was trying to avoid it). But Victoria please trust my words ,after my colon removed I AM BACK . my health has improved, i walk 5 kms daily, i do all my house hold work the way i used to and best of all i can take care of my kids the way i want to. i can see smiles on their faces when they see me full of life.please try and consult you doctor. steroids are going to ruin your body beyond repair. i still suffer from their side effects( joint pains, skin rashes, hair loss). after 7 months of surgery am feeling really full of life. i hope and pray to GOD for your troubles to get over .love to kids. pernita

  3. Christina January 17, 2012 at 10:22 am #

    Victoria,
    Thank you for sharing. I also had a big flare when pregnant with my first. I didnt know that I had UC though. So while pregnant I had to get a colonoscopy etc….not fun! I had a preemie (who was very healthy though) and is doing well. Im still struggling a lot with very frequent flares, on and off drugs. Its hard to be a mommy and struggle with this disease. I hope you are doing better. Thank you for sharing. Its encouraging to hear about others going through the same type of situations….and making it!!! Bless you!

  4. Victoria
    Victoria January 17, 2012 at 2:52 pm #

    that is really interesting thanks Adam, I wish the doctor had given me that info when I was diagnosed, or even when I told him i was pregnant..crazy noone actually mentioned the risks until it was too late!
    Thanks for the reply Pernita it certainly is hardwork with 2 little ones especially with the uc, its so unpredictable just kind of living one day to the next hoping i’ll feel ok the next day (some days i do feel ok then the next I won’t) but i think i’m over the last big flare up and off the steroids now so hopfully can keep it at bay and get on with being a mammy. I just try and make the most of it when i am feeling well, i’ll never take my health for granted again! If it continues then i suppose i’ll have to consider surgery, but i’m really not keen, but thats easy to say whilst i’m feeling well, i’m sure as soon as it flares up again i’ll be wanting it done. I still have a few more treatment options to try first like infliximab so i’ll give them a go first. i’m glad to hear you’re well and surgery worked for you, and that’s definetly something to help me consider if the time comes i need it :) x
    hi Christina, i can totally sympathise, i had a sigmoidoscopy, cat scan, and stomach xrays during my stay in hospital, not pleasant at all! i didnt think they would do them while i was pregnant but suppose the reasons for them needing to find out what was going on out-weighed the risks. i know people who have uc their priority is their heath and getting better but when you’re pregnant or have kids there’s the little ones to think of too, it’s not easy, definetly stressfull but definetly worth getting through it for the healthy times you can enjoy it and really appreciate being well. hope you and your little girl are well. x

  5. rebecca tanner January 17, 2012 at 2:52 pm #

    victoria is so brave and strong for her girls, i am so proud to call her my big sister :)

    love you xxx

  6. Jasmine from England
    Jasmine April 8, 2012 at 9:57 am #

    hey there i would love to be able to have a talk with you about your exsperience as i got diagnosed with colitis after i had my little girl and shes now 2 and i am hoping to have more in the future but am scared to because my colitis is not very well maintained at the minute :(
    would be great to hear from you as i know how much hard work it is …drop me an email and we could have a chat would be great as i have never been able to speak to anyone in the same boat as me :) x

    Jasmine-x-x@hotmail.com

  7. Nicola Roberts August 2, 2012 at 2:31 pm #

    Thank you for sharing your story Victoria wish I had come across it during my pregnancy. I was diagnosed Oct 11 at 16 weeks pregnant had to have a colonoscopy without sedation and was having moderate symptoms that my GP was treating with prednisone foam, i would come of and the bleeding and diarrhea would start again. My gynae was very old school and didn’t really seem interested in my colitis, by January my symptoms got really bad it just happened that I saw one of my gynaes registrars at one ante natal appointment my haemoglobin was at 5, she immediately admitted me and started me on pentasa (suppositries) and the predfoam, they also had me Cosmofer injections, inohep injections and gave me a blood transfussion, they asked me to stay on the meds for 4 weeks this taking me up to 36 weeks of pregnancy, I did as they asked and my symptoms were ok but as soon ad I stopped meds I flared again, they admitted me again gave me another transfussion and started back on meds, they decided then to induce me at 38 weeks. My baby girl was perfect and a good weight even though in all I gained only 13 pounds during the pregnancy, I stayed on the meds for 2 months after delivery I have not taken anything since May, and although I have diarrhea 5 days out of 7 I have not bled and I feel ok, I still have problems with my blood which they are going to treat with Cosmofer infusions and they now suspect I may have an autoimmune of the blood, I am currently waiting on results. Colitis robbed me of the chance to enjoy my last pregnancy I would also advise to be as healthy and symptom free as possible before trying, don’t ever be afraid to take meds during pregnancy the doctors will ultimately know what is good for you. Thanks again for letting me share my story x

  8. Kate September 9, 2012 at 9:41 pm #

    I find hypnotherapy (relaxation technique) really helps – still a work in progress but I feel the knot in my stomach subside after sessions. Salofalk 6x dy, budesonide enema when required. Trust me, I’ve been on those nasty drugs – cyclosporine, azathiaprione, pred and had 2 surgeons hovering over me in hospital over 10 years ago so I know what a nasty flare is. I willed myself better. I have pretty much tried everything. Doctors like to prescribe but they don’t really have the answers. This is about educating yourself and self-management, with advice from the GI.
    Trying for drug and symptom free and I WILL get there:)

  9. Kylie June 15, 2013 at 5:16 am #

    I have a girlfriend who was diagnosed with UC at 21. She is now 31 & having her first child (35wks) at the moment. She has been to hell & back many times with the colitis but found the most success from a natrapath here in Australia who specializes in gastro disorders. She was on a lot of liquid fish oil daily plus various other vitamins. This resulted in fewer flare ups a much healthier girl. About 12 months ago after a very serious flare up, she had her bowel removed & a stoma bag setup put in. She is sooo happy now as it has enabled her to start her family & she will have further surgery later to connect her bowel back up after she has finished having children. She said she wished she had had her bowel removed years ago because she is now free of all the pain, diorreah & bleeding every day.

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