Ulceration in pregnancy

Hi All, I have read some helpful posts and am pleased to have finally joined a group looking at BS. I am 5 months pregnant and suffer from genital, mouth, intestine and bowel ulcers. My healing is prolonged plus I have fatigue and achy joints. I take azathioprine and dermovate cream for ulcers

My obstetrician initially suggested a c section birth because of steroid ointment on my genitals weakening that area and danger of damage to that area (through natural birth) could affect my long term bowel continence. He was also concerned of the healing time and impact from a c section. He has now spoken to 'seniors' and suggested a natural birth. Does anyone have experience of the better option or any helpful advice on what I should do? I don't want long term bowel continence issues but equally a c section will be hard to recover from too. Thanks everyone.

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  • Hi I can't give advice but I had all my children by C section. My second was probably at the start of BD and my third I definitely had it but without diagnosis. It was essential I had sections. Also during my pregnancies I had no BD symptoms and felt very well throughout. Also I breastfed all my children for a year before ulcers reoccurred.

    Hope this helps.

    Billi

  • Thanks Billi so your c secs were unrelated to your diagnosis? Was healing from a c sec problematic? K

  • Hi well yes and no because nobody had any idea what was wrong with me.....I have suffered with BD for over. 30 years now.

    No, I didn't have any problems with healing and I had anaesthetic for all three plus because my first (pre illness) was an absolute emergency I was cut down straight through and continued this with next two children as I didn't want even more scars. My pregnancies were great, I breastfed all my children and it was about a year in after the last that I had my biggest flare.

    Good luck and do let us know how you get on and if you have a boy or girl.

    Hugs

    Billi

  • This is upsetting it's been so poorly understood for such a long time. It is still difficult now to explain it. Sounds like it was the right thing to do at the time. Yes I will definitely let you all know how I get on. Thanks for taking the time to respond I have found all the responses so helpful.

  • Hi Karinn I had my first major flare after my last csection

  • Hi Lilly thanks for your reply. Was c section still best option even with a post flare?

  • Never apologise for how you feel Kimmieblue. None of us should feel inner shame for experiencing pain. It is pain and non acceptance that causes suffering. Feeling these feelings is essential and healthy. You have a lot on your plate at the minute but you will master it and feel bright and joyful again. Even in my darkest times of despair i have known "this too shall pass". Us humans have resilience beyond our comprehension. Sending you peaceful and comforting vibes and you can feed this back to me next time i feel low xxxxxx

  • I had both my children by c section. Healing was fine. Neither by bechets concern. Your healing will be fine if better by natural birth as it's not so much trauma. C sec is heavy op. Either way you will be fine !! Good luck x

  • I'm curious about all these c sections though. Thanks Lojo. Just a bit anxious I think and trying not to set myself up on a flare worrying about it. Thanks for your response.

  • My body has always been a poor at healing well or quick so I think natural birth would have been better. It just didn't turn out so. Birth never does. You'll go for natural and end up having a section. It's not worth worrying about just get strong and prepared for your little one! I found spa tone a natural iron supplement helped me with fatigue before and after birth.

  • Thanks Lojo I am taking supplements but still have ups and downs with my tiredness. It's true what you say about intentions for either a c sec or natural birth , the opposite is bound to happen. I am prepared for that I just felt I wanted to lead with a preference so that I could have a plan then contingency rather than worry about both options and be at the mercy of the hospital that may not understand. Gosh I do over think things. Thanks again for your response. At least I have lots of positive feedback on births that gives me comfort.

  • Hi I feel for you, I had a great deal of ulcers during my pregnancy more with my first my daughter. Then with my second my son, my liver stopped working. Who knows why. Both were natural births but my first I tore and was cut. Unfortunately it all ulcerated internally. Externally the stitches healed well. I had a huge flare after both births. May have been just me.

    When I read about Behcet's at times it acts so differently from person to person. I'm not sure if you are in London but I'd be getting a second opinion from the centre of excellence. They may have more experience. The last thing you want is to recover slowly from a C section if you don't need to be.

    I found that when I was getting tired I took notice and put my feet up. I went for walks but all form of house work had to be done in sections.

    All the very best it is a beautiful time of your life. I hope BD settles down for you.

  • Thanks MichJa. Knowing how bad ulcers can get and with wounds and tears there too I suspected c section would be the better option especially if you lose muscle control over your bowel. I am scared of both delivery methods I'm not far from London I think I may ask my dermatologist for another opinion. It's hard to find a specialist and I get concerned that obstetricians blag it a little bit. I will definitely be taking it more easily closer to the end thanks so much.

  • Hi me again. Just read you are not far from London, why not ask your doc to refer you to the centre of excellence for Behcets. You can contact info at.......behcets oximetry.org.uk and then search for London Centre of Excellence.

    Billi

  • Hi

    Really god luck with the pregnany and birth. I had only one pregnancy (I would have liked more but am also really grateful for the son I have) and this was pre-diagnosis. I had to have forceps as my baby was looking up rather than down and this needs a wider birth canal as the chin is sticking out, so to speak. My son was actually born looking the obstetrician in the eyes which was a first for her!

    I had a flare post birth and in my sons first year - on no medication for my Behcets so slightly tough but my delight at having my son pushed all this into the background for me. I had a large cut from the forceps and this was v painful due to excess inflammation. Midwives used to make finger shaped ice cubes for me for the cut - a big help. They did this by filling fingers of a plastic glove with water, Tying knots at the top of each finger then freezing. Once frozen they could cut the fingers from the glove and voila - ice cubes perfect for the job! It did settle down and heal and I would say pain was definitely worth it. Also you could perhaps have extra steroid or something else suitable after the birth, but I am not a dr so don't really know if this is best/possible.

    I understand that sometimes behcets can be less aggressive during pregnancy- as immune system is damped down to accomadate genes in the baby which are not your own. This is not of course everyone's experience.

    It can then spring back after the birth which I did experience. I would definitely ask your GP to do an urgent referral to London Centre of excellence. I know they are looking after some other pregnant mums. They can assess tissue down below etc. I would definitely trust Prof Fortune and she is also super caring and good at putting you at your ease which I think would be important in pregnancy.

    Good luck with everything.

    Best wishes,

    Sian

  • So helpful Sian thank you for your reply. This group is so helpful. You feel some comfort in not being alone and learning from others experiences. I think I may pursue this referral but not sure why they haven't before as they have been confused by my symptoms but maybe my specialists haven't been aware of this centre of excellence or maybe there are cost implications I will research this option some more. Thanks again.

  • Hi,

    I am also currently pregnant (4 months) and worried about these things. I had two babies prior to diagnosis (both natural births ) but I was definitely sick at the time, and it just could not be figured out. I did well in the pregnancies but did flare after the first. With my second, I developed very sudden severe pre-eclampsia that I felt would kill me... it was terrible. I was treated in the ER to hopefully halt labor for a few weeks and it went away as sudden as it came... they could not understand it. Now, I am sure it had an element with my BD and I also have an autoimmune blood correlation. I would personally not opt for c-section and I am praying for natural because I know the healing will be easier on my body. Wishing luck to us both for healthy pregnancies and speedy healing!!

  • Wow there is another pregnant lady in the same situation. It is daunting but 1 way or the other it will be over and worth it. Just depends what healing process will be better. Good luck for the rest of your pregnancy hope it goes well and as healthy as possible. Does seem preferable by experience to go natural but healing naturally also has its downsides. Looking the best of 2 bad options really.

  • Karinn, Is it possible to change your this post to private if it's not already? I don't think it is but I am pretty new here.

  • Thanks katniss I wasn't sure how to but think I have now? Wasn't sure of the advantages of either community or everyone as I'm a newbie too.

  • Hi Karinn, I went through two pregnancies and c-sections 20+ years ago, before I was diagnosed. Had my first c-section because my baby stopped growing at 30 weeks (IUGR - intrauterine growth restriction, sometimes shows up in BD pregnancies) and my son wasn't responding well to the stress tests they gave me. Recovery was tough for that one because he was hospitalized when he was 10 days old with what we now know was neonatal Behcet's (he recovered fine from that and has had no symptoms since. He's 26 now). That c-section was a slow recovery because back then they used staples, and one of the staples refused to hold in place and heal.

    My second c-section was a LOT better in terms of healing afterwards -- they used stitches instead of staples. I didn't try for a natural birth because I had a vision-threatening retinal lesion, and was afraid the weak blood vessels in the back of both eye(s) might hemorrhage while I pushed. My doc agreed to the c-section, so that worked out well. The retinal lesion healed on its own after delivery.

    I did a survey in 2006 of 62 US women with BD who'd gone through pregnancy, and you can see the results in a couple of my Essential Behcet's blog posts:

    behcets.blogspot.com/search... I also included some charts/graphs of the info in my latest Behcet's book.

    Hang in there!

    Joanne Zeis

  • Thanks Joanne. Lots to take in and discuss with my obstetrician. It certainly is tough deciding a preference but it's nice that although these births were traumatic everyone recovered well overtime. Just interesting all the different reasons for c secs though. It does seem to be a common theme. I'll give that survey a look too. Thanks again.

  • I continued on my low dose steroid at start of pregnancy, then advised to reduce and stop steroid so I was just on my usual azathioprine until term. Around 24 weeks Pregnant I had some visual loss problems so advised to stop working and rest. Eyes improved. Under care of Behcet's specialist (now centre of excellence) and prof wrote to my consultant obstetrician about the post-delivery plan. After delivery (natural or caesarean) is the high risk period for Behcet's to flare. I had iv steroid in labour and 48 hours after delivery to help body cope with the phyiscal stress and reduce potential of autoimmune vasculitis of Behcet's. I was then well in those early weeks with newborn at home. Definitely worth being under obstetric consultant care (not midwifery care) and seeking Behcets specialist advice. Important to get lost-delivery follow up appointment with behects specialist too, even if hard to commute with newborn etc as that is the time to monitor eyes, ulcers etc. Good luck

  • Thanks legomum. Your experience does seem traumatic. It is quite hard finding a specialist to trust and I think that's why I wanted opinions from BS sufferers with both delivery methods. I am worried about healing either way post delivery.

  • Sorry Karinn, didn't mean to scare you, but probably the way I wrote what happened in my first pregnancy, it came across wrong. Overall I really did not have a traumatic experience. When my vision went was all a bit scary but I was seen by consultants quickly (advantage of living in London probably, and everyone responds quickly when you are pregnant) and the bit that actually made me cry was being told I could not go back to work! I was upset that I had not said my goodbyes to colleagues, finished projects I had started and could not work until the date that I had chosen to start maternity leave. I had been working fulltime and commuting on London train and tube for 1.5 hours each way, so I needed someone objective/ dr in authority to tell me to stop!!

    Anyway once I got over that shock , and realised life will not go to my own plans with a baby and with Behcet's, then I was fine. My eyes settled down and I relaxed into "stay at home" mode, did some gentle swimming while pregnant and made some space in our lives and flat ( and my head) for the new arrival.

    I had a normal delivery at term , but must admit I object to the term "normal" as many mums beat themselves up about it when they end up with things not going to plan. Half of my NCT añtenatal group needed up having emergency c-sections and a fair few of those were hoping for natural hypno-births and had been practising yoga ready for the birth. I recommend reading up / watching "one born every minute" and being open to all options! Would not worry about creams affecting you.

    After delivery I had the usual day 3 "baby blues" then that iv steroid kicked in and I had a LOT more energy than all the other new mums. Was itching to start "buggy fit" classes in the park (but you have to wait 6 weeks post-birth for exercise), was writing long thank you letters for baby gifts, was very very happy! Not that steroids do that to everyone as can affect mood so people feel low. maybe that was just my natural reaction post birth to our new bundle of joy, but I thought the one dose of iv steroid must have contributed??

    Definitely get referral to a centre of excellence- free for you, and no cost for GP as it has central NHS funding for rare diseases. Print out their website info for GP to make it even easier!

    All the best

  • Hi I don't know if I can be of any help. I have had three pregnancies, first one was before diagnosis (Girl) fantastic pregnancy and natural delivery. But with both my boys I was very poorly during my pregnancies (after diagnosis of BS) I was ulcerated - mouth, genitals, bowel and digestive tract. Joint problems, severe pain. Headaches, etc etc.. It was advised for me to be induced at 38 weeks for both and normal delivery. Second pregnancy had my first P.E and extremely unwell after, third pregnancy was better as they kept me under high dependency, were more knowledgeable about Behcets. This was at the Women's Hospital Birminham. Their care was outstanding working with my heart surgeon and rheumatologist and heamotologist. Obviously each and everyone's pregnancies are different and it was explained if there were problems c-section would be needed. (Obviously healing and infection are a problem with this illness). I liked the experience of natural childbirth and obviously it is better to recover from. I was high use steroid topical on genital region and had a slight tear on my second delivery this took longer to heal. It is difficult as everyone is different. Please keep us updated with how you get on. Sorry I can not help any more, and the best of luck for your delivery xx

  • Thanks Betchets babe. I am happy to know that a natural delivery worked well as my obstetrician scared me by talking about risks of bowel incontinence. No one seems to mention this so I'm happier if it does end up being a natural delivery. Thanks for your advice and experience. I will keep you guys updated.

  • Hi Karrin

    Just wanted to add that we are only talking from our experiences. In your original post you mention dr was concerned about tissue strength due to using steroid cream. I , for one, had not used such creams when having my son as I only got my diagnosis much later. If you live in England a referral to Centre of Excellence is free and GP can refer you, including the timings of your pregnancy and birth . Drs there could assess tissue etc and give you an opinion, advise your obstetrics team. Could be worth it for you.

    It's certainly good to read so many positive stories in this thread - the fightback against this bloomin' illness!

    best wishes,

    Sian

    Sian

  • Thanks Sian I think you are right. Also hadn't realised a referral would be free as you often find a reluctance to refer due to cost. I am going to ask my obstetrician more as I'm not confident but at the same time what he says makes sense. Thanks again.

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