Ulcerative Colitis Sufferer Wanting Babies!

Hello, my name is Victoria, I live in the UK, I am 25 and have been suffering with Ulcerative Colitis since I was 18 . . . .

I am on medication which really helps me, I take Azathioprine (immunosuppressent) and Mezavent (mesalazine). I have on average suffered a flare up once a year. I’ve had two Iron infusions, one sigmoidoscopy and one colonoscopy 2 years ago that showed a completely healthy colon – so I stopped the meds and ended up having a 4 month long flare up! Ive only been hospitalised once (on diagnosis) and my last flare up was last February. I am currently suffering a ‘mini’ flare up now I decided to take the time to research the disease properly after someone suggested I should, which is how I ended up on this site….

Id firstly like to say how brave some of your stories are. Its made me realize I am actually very lucky with how my UC effects me and it could be so so much worse. How you have the courage to carry on with life is really inspiring. Reading the different treatments and diets that you are trying has really got me thinking that I need to make some drastic changes which may make me have even less flare ups. During this flare up I have been particularly more stressed and felt at points very low and lonely. Its difficult for my family and fiance to understand.

I am getting married this year and really want to stay well through the whole planning process and not be suffering the crippling symptoms on my big day! This current flare up is due to the stress of my wedding dress, when I collected it from the bridal shop it has been totally ruined and clearly worn before so I’m currently battling to get my money back! All very stressful, I also work full time as a staff nurse on a busy ward which obviously takes its toll.

However, all that aside my main worry at the moment is wanting to become pregnant as soon as we’re married. I have scared myself silly by reading all sorts on the net about not being able to conceive if I’m having a flare up and it can be difficult for UC sufferers to carry a baby normally?! Has anyone got any advice for me or any reassuring baby stories would be much appreciated! I’m trying hard not to worry and get stressed as that doesn’t help the symptoms – just a viscious cycle!

I have been reading all about this SCD diet everyone seems to be on. I originally ignored any dietry advice as my Doctor didnt seem to think it was related and I should eat what I like?! After reading your success stories I’m inclined to think he’s wrong. Any advice on how I should get started and which books I should buy? Also I came across another webpage that talks about a product ‘kefir’ meant to be a really good probiotic? Has anyone heard of this or uses it? I don’t actually take any probiotic (again my Doctor didn’t think it made much difference?!) would taking something like Yakult or Actimel work aswell? I am willing to try anything!

I really want to get stable before our wedding in December so I can be at my healthiest to conceive and start our new family. Any tips, advice and ideas would be much appreciated. However, after reading all your stories of success I already feel more positive so thank you.

x o x o x o x

-Victoria

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Response from Adam:

Hi Victoria, there are quite a few other people who have shared their stories on the site about pregnancy, and several who have asked very similar questions to the ones you present.  The great news is quite a few people have had successful pregnancies while dealing with UC, which hopefully is a big relief to you.

As for your questions about diet, I follow the SCD diet, and there are details about getting started on this diet on the DIET PAGE.

It has become very popular as a treatment for people to use in addition to their medications, or as an alternative to medications.  For me, when I follow the diet correctly and don’t break any of the rules, it has really helped me out and I plan on continuing to use it indefinitely at this point.    As for your questions about kefir, I myself have not tried that for any length of time to give a great opinion on, but from many other people’s stories and responses, there is a large group of people who have had positive outcomes with VSL#3 which there is also some information on within this site.

Best of luck to you, I hope your wedding goes well, and the same with regards to you starting a family shortly thereafter.

-Adam

 

12 Responses to “Ulcerative Colitis Sufferer Wanting Babies!”

  1. KristinApril 20, 2011 at 9:28 am #

    Hey Victoria!

    I have a couple of things to say that might help you out! First, congrats a million times over on your upcoming wedding. I was married last August and was SO nervous about my stomach causing a problem. After all, it’s not easy to rush off to the bathroom when you’re wearing a wedding dress and when a ton of people are watching you all day! Talk about anxiety. I really focused on my medicine and exercise before the wedding and it might not be the best option, but I popped some Pepto Bismol pills in the morning to help calm my stomach and I felt great all day. Not sure if that would help you at all, but it got me through the wedding day without needing to rush to a toilet, which is an utter miracle lol

    Anyway– my other two cents: I’m a freelance writer and I’m currently working on an article proposal that has to do with women and UC. I recently interviewed a GI doc at the Mayo Clinic & a woman who works at CCFA and they both had this to say about pregnancy and UC: women with UC are as likely as healthy women to get pregnant. It doesn’t seem that UC affects fertility, but what they both noted was that if you’re in an active state with your disease when you get pregnant, you will likely stay in the flare or get worse throughout the pregnancy. HOWEVER, it seems that women who are in remission when they get pregnant stay in remission and don’t have UC symptoms while pregnant. I’m sure this isn’t 100% across the board in every case, but in most cases this seems to be the trend. So your UC most likely won’t affect your ability conceive. It just might affect how you feel while pregnant. I personally know 2 women with UC who were totally free of their symptoms while pregnant, so there’s something to it.

    best of luck to you!!

    Kristin

    P.S. I noticed Adam mentioned the probiotic VSL#3– I’m currently taking that with Apriso. It’s still early on (only about 3 weeks since I started), but in the past taking probiotics have ALWAYS helped ease my UC symptoms, sometimes even more than meds. That could just be my unique reaction to probtiotics, but they might be worth a try for you!

    • Victoria AnnApril 21, 2011 at 11:29 am #

      Thank you so much for your response to my post Kristin!

      Its definitely a relief to hear that I may be able to conceive like a normal girl! I was so worried after the research id read. Id never before taken the time to think that my UC could effect my ability have a family. Its been a stresful few weeks. Also I didnt understand that conceiving whilst having a flare could mean staying in a flare the whole pregnancy or the more positive version of not having a flare the whole pregnancy – i never knew they were so closely linked.

      After everything Ive learnt on here regarding the SCD diet im definitely going to try it. My finance agrees – anything to help me and get into remission. Thanks for your advice on the probiotic, I definitely want to try it but im not sure if its available in the UK and I have no idea yet where I would be able to buy it! Im going to look into it asap though!

      Thanks again for taking the time to write to me, good luck with your article!

      Victoria Ann x o x

  2. ShayApril 20, 2011 at 3:43 pm #

    Hi Victoria,
    I juat wanted to let you know I have also had Uc since I was you’re age, I am 25 now. I had my daughter when I was 21. I conceived very quickly and had no complications I did need to take extra Iron but that was about it.I didnt have and symptoms of my UC! My daughter was healthy! I was very relieved! however after having her the stress of a new baby and breast feeding taking a lot out of me and im sure plenty of factors, I ended up having the worst flare ever landed myself in the hospital for a month. I missed my daughter and family very much it was a very hard time! I was 89 pds when I was released I didnt even have the strength t o pick up my daughter from her crib. So make sure you watch your health as closely as your new baby’s cause its just as important. best of luck and wishes for you
    Shay-

    • Victoria AnnApril 21, 2011 at 1:08 pm #

      Hi Shay thanks so much for your response to my post! Its lovely to hear from someone with UC thats had a baby. Sorry to hear you had such a awful time after, flares that reduce you to hospital admission truly are horrific!

      I do plan to start the SCD diet (the books are on their way!) and a probiotic, anything to help me get into remission for when I want to conceive! Nice to hear you had no flare ups during your pregnancy.

      Thanks again for you post

      Victoria Ann x o x

  3. Richard (UK)April 21, 2011 at 12:15 pm #

    Hi Victoria, my name is Richard have had UC for 5 years now Im now 29, my younger sister has had her’s from 13 and she is now 25 with her second kid on the way in 4 months, she had her first kid at age 16 and handled it well. It sounds like she is very much like yourself, she is having a flare up right now and so have I been for the last month. We both have a very different effects from our flare up. She has bad pains, cramps, gas, blood when she has alot, normally needs an injection to recover in hospital and she can recover well each time in short time, she doesn’t take her medcines, I’m not saying this is a good thing. She doesn’t go to the loo as much as myself. I have to face the bathroom from 8 to 12 times a day with blood but I only had my first major cramps this year after my major flare. I take all the meds and never come out of a flare fully, in that I mean I still need 4-8 trips to bathroom and weight that I lost during my ‘major flare’ is so very hard to regain. 125Lbs currently I was 145lbs last year I’m tall aswell so this is very thin. She lost weight only the first year with UC since then has a very healthy normal diet and she try’s very hard not to eat bad things like spices, junk food, loads of chocolate. I think she is lucky with what she can eat while pregnant. She believes that the baby needs stuff that she might think is going to hurt her. Like sweet things, I haven’t touched sugar in 5 years or sweets and only had a piece of chocolate cake at birthday. However she still isn’t happy when she has a flare up so she is looking into a diet to help her. Myself I am very strict with food and will start the SCD diet once I get a yoghurt maker, I have already followed the ban list as I like to call it in the SCD book, resulting in far more energy than what I would have had if ignoring it. So it helps.

    So based on my sister’s experience go for it, the younger you our the better, as long as your weight is good and if you never drop weight during a flare that should make you happy, oddly as we all like to not have extra weight :)

    My dad had UC also, he has cured himself but we believe that he got his around his mid 50′s from stress. He made lifestyle changes and was a fireman, and he worked 12hour shifts in a bakery. When he had UC he cycled 9miles to work and back after a 12 hour shift. He is a machine, ex army sgt. He did change his diet instead of eating new things he simply stopped eating bad things, like fried breakfast, less beer. He is now 64 close to 10 years cured.

    You have to set your mind to curing yourself to beat it that is what I have learned from my dad and never give up.

    Taking extra things to help you can help. I take some probiotics pills but i’m starting to ignore those products with probiotics (yoghurt and drinks) as they are made from milk (lactose). Fish oil / cod oil every day helps I also had to take them for my back injury from work 6 years ago but these help for the UC aswell.

    I soon will try some magnesium pills soon, the packet says great for pregnant women aswell to aid for breast feeding and if your UC is active then its very likely you will be low not only iron from bleeding but magnesium and maybe calcium. If you have a good doctor ask him to check your blood and ask for the levels of these. He can help suggest if you need to take these things to aid your body with the baby.

    Milk – myself have tested soymilk I like it but I have had lactose free milk for like 4 years it helps I never have mucus now or gas. My sister still has normal milk and has gas and cramps so maybe that might help you.

    Fruit – I am very boring and only eat banana’s which are great but only eat brown spots type the sugar inside will digest easier than yellow/green banana’s soothing your UC.

    Less bread – myself and my sister don’t touch it during a flare, its bad. This year I will try gluten and grain free diet. So very hard to find food without it, this is why the scd diet is hard to follow. You will have to cook bread, muffins, cakes ect with almond flour and gluten free. If I wasn’t such a rubbish cook I would have tried this years ago but thanks to youtube I can cook things so much better.

    One last thing lay off the caffine, buy decaff tea and even coffee or try peppermint tea. I love it with honey as I can’t use sugar. My sister told me about some very expensive type of honey a doctor told her to check out and I have forgotten what the name is, never buy the cheap honey that stuff has bad added things in, pure natural only.

    Best of luck with everything
    rich

    • Victoria AnnApril 25, 2011 at 12:03 pm #

      Hi Rich, thank you so much for your response to my post. Its so helpful hearing from people living in the UK. The drugs are quite different here. Ive started to try and leave out a few of the ‘bad’ foods and have ordered two books from amazon so really going to give it a good go!

      Im not sure which foods effect my UC but im hoping by following this diet ill be able to reduce my medication or maybe stop it all together. Im always really bloated and am far heavier for my petit frame than I should be! Any weight loss would be a bonus! Its obviously more about stopping my symptoms.

      Congratulations to your sister thats lovely that shes expecting again. I really cant wait to be in the same situation! Hopefully the changes I make to my lifestyle will help.

      Thanks again for your response

      Victoria Ann x o x

  4. KelliApril 21, 2011 at 1:48 pm #

    Hi Victoria :)

    Your story struck me straight away as I’m hoping to try for a family next year, & the advice people have given you has been useful for me, too :) So thankyou for bringing it up!

    I’m currently also on Azathioprine as steroids no longer work for me, & also Mesalazine. I find that the Aza is working very well but I have to say, probiotics have been a miracle for me. The theory that bad bacteria causes our bodies to attack made a lot of sense to me considering our disease is autoimmune – it helps break the cycle, I think.
    I know a lot of different probiotic names have been mentioned on here a lot, & I think that has to do with a lot of members being from the US & different names over there, but being from the UK myself (South Yorks) I thought you might like to know that good old Acidophilus supplement from Holland & Barrett is what’s doing so well for me. I work for H&B so read up on the benefits, & bought some of the high strength ones. The active Acidophilus is what you find in all those probiotic yogurts etc but is much more potent in supplement form. If you’re worried about dairy content, it comes dairy free, too. I urge you to give it a go :)

    As for diet, it’s odd. My brother has UC & has done for 20 years, & diet has never really affected his condition, just stress.
    As for me, diet is definitely a factor but not to the extent that I need to go to the extremes of SCD. I just avoid sugar (though strangely, it’s sweets & rich desserts that affect me more than chocolate & biscuits/cakes), too much fried foods, nothing strongly spicy, too much fibre, & acidity.
    Fruit n’ veg is something that I have in small amounts every day. If I overload on say, fruit for breakfast, salad at lunch & then veg at dinner, man, I know about it!
    I think everybody is different when it comes to diet. All I know is, I don’t have any other vices (don’t smoke, drink or gamble) except food, & I won’t let UC stop me having a little of what I enjoy.

    I think the honey Richard is referring to may be Manuka Honey, which comes from New Zealand & has anti-microbial, anti-bacterial, anti-viral & antiseptic properties which makes it different to normal honey & therefore expensive! We sell it in H&B & it’s really popular, with loads of people saying how good it is for all sorts of things. I’m currently trialling it myself to see how it helps with my UC but it’s early days. So far I’ve noted that it really helps with indigestion – which I get a lot of due to the steroids I’m currently tapering off.

    Congratulations on the upcoming wedding, kick the dress makers arse, & most of all – try to relax & enjoy it all :)
    If you ever want any advice from a herbal standpoint, you can find me on the ihaveuc facebook page or I posted a story on here myself so you could message me that way too :)

    Feel better soon!

    • Victoria AnnApril 25, 2011 at 12:21 pm #

      Hi Kelli, thank you so much for your reply to my post. Its so nice to hear from someone my age, in the UK on the same drugs as me!

      It wasnt until this flare up that I started to research on the net and came across all the different scary parts to conceiving with UC. After all the response on here and the stories of girls having babies without any problems I feel so much better. Glad its helped you too!

      Thanks for the advice on the probiotics, ill defo be taking a trip to my local H & B and trying some of the probiotic youve mentioned. Manuka honey does have amazing various healing properties. Im willing to use that for a substitute to sugar in tea!

      Im not sure how much my diet effects me because the azathioprine really does help me but hopefully by sticking to the SCD diet ill be able to reduce my medication and maybe even come off it all together. Ive ordered two books from amazon, really looking forward to reading them and getting stuck in!

      Ill keep the site posted on my progress and take you up on your offer of advice if I get stuck.

      Thanks again for your reply, im very grateful

      Victoria Ann x o x

  5. VApril 22, 2011 at 8:42 pm #

    Hi Victoria,

    I have been struggling with UC my entire life. I am now 31 years old with 2 beautiful and healthy babies. Do not be afraid or worried about being or becoming pregnant. I to, was concerned just like you. Due to that my husband and I took no precautions on fertility when we wed in April of 2006. I was positive that I would have a hard time becoming pregnant and then being able to carry healthy. Due to that my husband and I decided we would leave it in the hands of god and what happens, happens. We honeymooned in Maui, Hawaii then 9 months later we had our son. His pregnancy was amazing. I had no flares, no issues at all. I had a vaginal delivery, 9 hours of labor with only 20 min of pushing and here in my 8lb 9 oz perfect little boy. My son is amazing, now 4, healthy and strong. When he was about 10 months old I once again had this feeling that I was never going to be able to have a daughter (which was always my life long dream) We started trying in October and in January we found we were expecting our second…which happens to be my daughter. Her pregnancy was a little harder then my sons. I did not have the typical flare that I normally got with my UC but I was terribly constipated all the time. It got better as time passed and after carrying for another 9 months I had another beautiful delivery. After being induced at about 8 am, I delivered a 9 lb 9 oz baby girl after only 11 minutes of pushing. The stresses of getting married are horrible but in the end, just remember that when this is all over you are going to be married….you get to start a family of your own. I know living with UC is hard and something that we all have to think about on a daily basis. We can not let UC take over our lives. Enjoy getting married, enjoy marriage and when its time the children will come along. I will be thinking and praying for you over the next several months. Keep us posted on how everything goes. Best wishes for your marriage and all the joys that comes with it.
    V

  6. StephanieMay 5, 2011 at 11:44 am #

    Thank you all for the encouraging posts on here about your experiences! I’ve had UC for 10 years, and have been blessed to be in remission for the last 6. I’ve been on Mercaptopurine and Balsalazide, which has worked wonders for me. My doctor has said that we’d need to change my treatment when thinking about starting a family. Recently having gotten married we are starting to think about that, and so I’ve been attempting to taper off of the Mercaptopurine, but without great success. Since the SC diet has worked so well for people on here, I think I’ll give that a try to help me be free from the Mercaptopurine, and my hope is all medications someday.

    Thanks again for all your encouraging stories! It’s great to hear the experiences of others who understand dealing with IBD.

  7. FrancescaJune 16, 2011 at 2:33 am #

    Hi,

    I just wanted to drop a line in this conversation to say i had a very healthy pregnancy whilst suffering from Severe UC.I had one time when i had a bad flare up and ended up in hospital when i was 32 weeks pregnant, But the docs got it under control with steroids. My son was 2 weeks late and is a very healthy little boy.
    Fran :-) x

  8. soniaSeptember 7, 2011 at 9:05 am #

    Hi Victoria,

    I was experienced a UC flare up 4 months into my second pregnancy (although I didn’t know what it was at the time) I lost weight and was put on 20mg Prednisolone at 6 months into the pregnancy. I was terrified at the time, but could see I wasn’t gaining weight properly. I had regular scans to check the baby’s growth,and pleased to say the outcome was a very bonny boy (7lbs 8oz) He was three weeks early and an easy natural labour. What I would say is; Compared the the crippling stomach cramps we all experience with UC, Labour pains are NO problem!

    I must confess, UC has made me think twice about any future children, but we are lucky enough to have a boy and girl, and I’m almost 40, so it’s probably time to call it a day anyway! If we were to try again, I would only be concerned about getting past the 3 month stage, then my understanding is the foetus is able to cope a liitle better with any medication you might need in order to get through.

    I breastfed whilst on 20mg Prednisolone, and for a while on Balsalazide. Neiher have had any ill effect on my son (now 2years old)

    I would also agree with all the dietry restrictions Rich mentioned worked for him. That is pretty much my list too. During a flare up, 3 weeks of Prednisolone works well for me, and gives me a good 6 months UC free (with the help of Balsalazide) I’ve just started with another flare up, but Im hoping to nip this one in the bud by getting help sooner, I am dreadful for ignoring it and hoping it will go away by itself.

    Congratulations on your forthcoming marriage, and please try not to worry, I am sure you will be fine.

    Kind regards,

    Sonia

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