Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Newly Diagnosed and Wanting to get Pregnant

Lanae with colitis in Alberta CanadaMeet LaNae:

I’m a newbie. My symptoms started in Dec 2011. I had a sigmoidoscopy in March 2012 and was diagnosed with UC.

Some more about me:

I was always a healthy kid. Active, into sports, got my pilots license right out of high school……… haha random. Worked at a hardware store and then became a hair stylist! I guess I must not handle stress very well – had shingles before due to stress and I’m almost certain, for me, that’s where my UC came from.
I love to laugh, be with friends and family, entertain…….
I’m easy to get along with. I like to play volleyball, snowboard, ride my motorcycle, cook…………aaaaand a lil crafty too.

Colitis Symptoms Right Now:

I recently switched meds again and other than a little mucous and some cramping I’m doing ok.

Wanting To Get Pregnant

Hi my name is LaNae………….28 year old female and diagnosed with Ulcerative Colitis in 2012.

I was living 4 hours away from where I am now – had my life in order – never sick, never had any bowel or stomach problems ever – no history in my family either. Then, I met my husband online and moved to where he was in June 2011 and my whole world changed drastically. I now live in Lethbridge, Alberta Canada. At Christmas time 2011 I started noticing weird stuff going on: urgency to go to the bathroom, mucousy stools, and then……. the blood started. I went to the doctor as soon as I could. I was scheduled for a sigmoidoscopy right away but the procedure never actually happened till March. I am new to the area I live in, with limited docs taking new patients and 1 GI doc for the whole southern part of the province.

The doctors never made it really clear after the the procedure was done what was actually going on – which I think could have been and be the most frustrating part. I knew my symptoms led us to believe it was colitis but my biopsy was a “sparatic pattern” which would be more crohn’s related. (it wasn’t until my last doc appointment that he actually said “ulcertive colitis” but he still beat around the bush!!!) I was put on asacol (8 pills at 800 – I think) right away and I found myself going through about 10-14 days that were really good (hardly any symptoms) and then about 10-14 days where I seemed to be in the bathroom a lot.

This cycle went on for about 3 months and then June 2012 went into a huge flare (lost my appetite, bathroom at least 15-20 times a day, lost 10 lbs in 2 weeks) for 2 months until I was put on prednisone. Prednisone was a life saver. I started feeling better and as I was tapering off the prednisone my doc started me on imuran (2 pills at 50mg?) at the end of Sept 2012. I thought things were getting back to normal until I noticed I was losing A LOT of hair. I rode it out a bit but I knew this wasn’t normal. I went back to the doc, he took me off imuran and he put me back on asacol which is where I am now – I’m doing great actually but I can’t help but wonder and wait when my symptoms will start again.

I guess my BIGGEST concern now is I was married a year and a half ago and my husband and I want to start trying to get PREGNANT. First off, I am the worst at being patient and my doc says I need to be in remission for a while before we try (I’m not getting any younger here!). Second, I’m super nervous to be on meds while trying and being pregnant even though my doc thinks its perfectly fine and I’ve read tons of blogs on women who were on asacol and had healthy babies, I still hate the idea.

I am super pumped I found this website and all of you! Its definitely the emotions for me and feeling alone in my disease on top of a lonely beginning in a new life with my husband here.

My question is: in getting healthier (the thing is I’m actually doing ok right now) but I feel the meds are just masking the symptoms and problems right now –

how do I start the SCD diet with little symptoms and taper off my meds? do I tell my doctor (though he thinks diet has nothing to do with it)?

and

if the SCD diet works for me – how long do we wait to start a family and is this a healthier/safer way to go? risking a flare during pregnancy.

THANK YOU SO MUCH!

desperate, frustrated, nervous and wanting to get pregnant……….yours truly,

– LaNae

Colitis Medications:

I just feel like all these meds are bandaids…………they cover the problem but they aren’t healing the problem. Maybe they are needed at times but I am interested in a more natural way.

I am currently taking 5 pills 800 asacol, biotin (mostly to help recover from the hair loss), folic acid and iron.




49 Responses to Newly Diagnosed and Wanting to get Pregnant

  1. Courtney January 11, 2013 at 8:42 am #

    LaNae,
    I had the same desire as you. I didn’t like being told that I should wait. I waited as long as I could and then we got pregnant in September. I am now 18 weeks! I will say that my UC has been active throughout. I am one of the unlucky ones who had the whole morning sickness issue throughout the whole day. So the UC issue did add some stress. As much as it is hard to wait, I would say if you can hold out until you feel healthy without being on a lot of meds that could help you to have a UC free pregnancy. It is easier said than done I know. We only get older :) I was hoping that I would be one of those few people that go into remission during pregnancy. Also, I am on Cimzia which is safe to take throughout but you cannot breastfeed. Good luck with everything!

    • LaNae
      LaNae January 13, 2013 at 8:06 pm #

      Congratulations on getting pregnant Courtney!
      thanks so much for your reply and encouragement! Its so comforting to know I’m not the only one in this situation. I would say if April rolls around that will be 6 months remission for me and I hope my doc gives us to go ahead!

  2. TiiniTete
    Tiinity January 11, 2013 at 11:31 am #

    Thank you for sharing your story! Glad you are better.

    I’ve had UC for 8-9 years and never responded well to medications so they removed a huge part of my colon within a few months of diagnose (colostomy for 9 months and then reconnected). I still have flares in the part which is left, also I have other GI problems, like a lot of gas and bad breath from time to time… I already tried all the docs meds and done some surgery and as you say they seem to only mask the symptoms…

    And what I am getting to is that this year I started to be my own “health hacker” during my most recent flare. And I don’t take any meds since I don’t see them working. My aim is to get to know my body: know what all the symptoms means. Know what to eat since, yes, what we eat will affect how we feel and also GI-symptoms. So am I better? yes, am I 100%? no… And it has been a struggle mainly due to two aspects: frustrating to find and evaluate information and scared as hell since I was not sure I was doing the right thing.

    The biggest change was to start the SCD/GAPS/Paleo I have customized it to work for me. I want to give you the advise to not assume you can have anything even though it is on the legal list. For me fruit, nuts and dairy is completely wrong. But I can have legumes (and feel great from eating them) and eggs (these can be problematic for some). For me SCDlifestyle has been quite helpful even though I found their book to not be that informative since I know how to cook.

    I am very glad I started to listen to my body and be in charge of my well-being, I’ve learnt a lot and faced many fears. During this time I have been very open to my doctor about it, better that way. And even though my doc doesn’t agree with me he appreciates that I tell him what I am up to.

    And by the way, I would too want to get pregnant but need to wait until my body is more healed. And I also feel the “shit time is flying and I am not getting any younger”, I’m 30 years old. Lets hope for a good recovering during 2013 and babies soon. All the best to you!

    • LaNae
      LaNae January 13, 2013 at 8:14 pm #

      Hey Tiinity!
      Awwww totally 2013 babies! That would be so great!
      thank you so much for your reply!
      Ya I want to start a food journal to track whats going on with my body. The THING is I never had “trigger foods”. People ask me all the time what what my trigger foods are but I can’t tell you that there are any. Which is also frustrating because if that was the case I could eliminate those foods. But it doesn’t seem to matter what I eat. Also, that was great advice about not just following the SCD book alone – because I’ve realized its sooooo different for every person.
      thanks again!

      • Courtney January 14, 2013 at 12:45 pm #

        CCFA just released a GI tracker for IPhones and your desktop. I used to have a chart of my home that was so labor intensive. This one seems esay enough.

        • Jenny Mom
          Jenny March 21, 2013 at 8:50 am #

          Thanks for this tip! Downloading it to my phone now. I’m really bad about keeping track of that stuff, so I hope this helps!

  3. Kathy Prieto January 11, 2013 at 2:48 pm #

    LaNae,
    So sorry to hear about what I r going through and wanting to get pregnant. My husband had UC and I have a severely disabled child with gut issues. With both of them- whatever the “regular” doctors said- example diet and probiotics don’t help- THEY WERE WRONG with us. Probiotics(we use VSL), SCD yogurt(easy to make- my mother in law says SCD yogurt tastes the best!) and coconut oil have worked well for us. Don’t b afraid to try SCD- it’s. healthy way to day no matter who u r, and probiotics r good for u and ur future baby. Good luck and don’t give up!

    • LaNae
      LaNae January 13, 2013 at 8:22 pm #

      Kathy!
      thanks for sharing about your husband and child.
      Hey! Ya I’ve been on SCD for a week now – lots of prep but if you think ahead its really not too bad. I have a huge sweet tooth too but I’m getting over it – some days are tougher than others but I feel amazing now that I’m on it. I used to feel so heavy and sluggish but I eliminated all those sweets and stuff and its crazy how much better i feel already, just with my regular health stuff alone.
      I’ve noticed a lot of the recipes call for homemade yogurt but I haven’t attempted it yet – could you give me some pointers. I was looking for a yogurt maker but all I end up finding is frozen yogurt makers, because from what I understand you need to keep it at a constant temperature for the first 24 hours……?
      thanks Kathy

      • TiiniTete
        Tiinity January 15, 2013 at 3:49 am #

        For the yoghurt, you can try to make Kefir, it “matures” in room temperature which means no need to get yourself a yoghurt maker. There are starters to be bought or you can use yogurt from the store as the mother. I’ve heard the best is to get kefir grains, but I haven’t had the possibility to try it myself.

        • LaNae
          LaNae January 15, 2013 at 7:35 pm #

          THANKS!

    • LaNae
      LaNae January 13, 2013 at 8:49 pm #

      One more question, do you think the SCD diet is ok for getting pregnant on – like proper nutrition for me and the baby?

      • TiiniTete
        Tiinity January 15, 2013 at 3:51 am #

        I think it is better nutrition then the SAD… If you are eating the variety of foods provided on the diet.

  4. Trina
    Trina January 11, 2013 at 5:56 pm #

    I’m a hairstylist too. And I’ve had UC for approx 9yrs. Stress plays a HUGE role in flare ups. As well as diet. I would def try the SCD. And start the process of elimination with what foods cause you discomfort. And keep a food journal. This way you can see how certain foods effect your gut. I am currently in remission. And on no Meds! I am a firm believe of probiotics, Boswellia, Fish oil, and Glutamine. I too have been on Asacol, Lialda, Pred, and 6mp. And I as well had the hair loss problem. The 6mp caused me hair loss. I’m currently engaged and the topic of having kids comes up all the time. There are certain drugs like 6mp that are not recommended if you are trying to get pregnant. I think Meds play a huge part in try to conceive. And I wouldn’t risk being on these meds while pregnant. That’s just me though. The chances of you also passing this along to your child is also something to think about. And the fact that pregnancy can possibly cause flare ups to be worse is another thing to think about. I would def get your flare up under control before trying to conceive. Good luck.

    • LaNae
      LaNae January 13, 2013 at 8:29 pm #

      Trina! a fellow stylist, thanks for writing.
      Yes it is my plan to keep a food journal – at this point tho I can’t really put my finger on any trigger foods. How much or little do you write down? – I’m currently on asacol and feel great actually – I’m also starting my second week on SCD. I just don’t know if I should try to get off meds…….because as it stands, april/may would be my 6 month remission mark and my doc said I should be in remission for at least that long before we start trying to get pregnant. But I believe I will flare at least for a little while if I go completely off and then start at square one again with remission.
      Also with your hair loss……did it grow back? One of my docs said it will from the roots. Its been 2 months since I’ve been off imuran (caused the hair loss) and I don’t see any new growth – which makes me nervous it will never some back……
      thanks again!!

  5. KimberlyHI
    Kimberly January 12, 2013 at 12:03 pm #

    LaNae,

    I had a baby just over a year ago, I had to wait over a year to conceive. Once I finally was in remission I got pregnant. Luckily I was in remission the whole pregnancy and took 600 mg asacol throughout. It is creepy to be on meds while pregnant and breastfeeding but I guess at least from a doctors perspective it is less risky than having a flare. Well now, I am 34 and want a second baby but again I am waiting because months after I had baby I got a bad flare. I believe I am close to remission now but am on imuran and remicade, two meds I do not want to be on while pregnant. I spoke to my doctor, he says it would be ok to have a baby on these meds but that the OBGYN doctors would probably disagree and take me off. Well, regardless I want to be off them when I get pregnant but here I am almost 35 and time is just ticking by, it is hard to wait. I am scared that if I get off the meds right now I will get sick again, so I will wait a little longer and see about going back on asacol, which they took me off because they thought it was not working well enough.
    I also am losing hair on Imuran, by the handfuls, so he is slowly reducing my dose. I want to get off that and then off remicade. I think most of us, like you, are kinda looking for ways to get off these meds and try to live a normal life! Anyway I think if the diet works to reach remission then that is a great option. I would say to try to reach remission before becoming pregnant. In 2009 I had become pregnant the first time, and I was flaring at the time. My flare got a little worse, but actually I ended up miscarrying. It wasn’t due to the flare that I miscarried, but it motivated me to make sure I was healthy the second time I tried, and sure enough I now have a gorgeous healthy little girl. Another thing, before I had a baby I was scared about having a child and getting sick, like how will I take care of my baby if I am flaring? Well now that she is here, when I did get a flare, it was not even an issue. Even though I was so very sick I knew I had to find the strength to take care of her and I did. She makes it easier to get through a flare too, because you have to keep your chin up, you have this little person that needs you and makes life so worth living. Here I was thinking it would be harder with a child but it is not like that at all.
    Some women get worse during pregnancy, but others actually get better. I did great my whole pregancy, even with all the ice cream I ate!
    Wishing you remission and pregnancy soon! Hang in there!

    Kim

    • LaNae
      LaNae January 13, 2013 at 8:43 pm #

      Kim! *tear* what you said meant so much
      Thank you so so much for writing. How long have you had UC?
      So when you got preg you were on 600mg? I am on 800mg x5 pills! gah. But I think that is still less than others I have read about.
      SO hard to wait! It took me a while to decide it was time to have kids and then the doc said not yet and now I feel like I want to get preg more than ever! And I feel like waiting is stressful and the unknown is stressful but at the same time I tell myself not to be but that pressure just makes things worse…….
      I was also on asacol – flared – imuran – and back on asacol. I hope you do not have to be on imuran for very long. And I have often thought too about being sick and trying to take care of a baby – thanks for the encouraging words.
      I feel fantastic on the diet, tho its only been a week. But I debate whether to go off meds because i’m sure I will flare for a while and feel I would have to start remission all over again. And my doc says to be in remission for 6 months at least before trying.
      thanks again!!

      • KimberlyHI
        Kimberly January 14, 2013 at 12:39 am #

        Hey again! Yep, I have been on 8 pills of asacol a day, but during my pregnancy and being on remission, they allowed me to go down to 6 pills a day, which I am now realizing my first post was off! So I said 600mg but actually it was 6 pills at 400mg each, whereas normally I was on 8 pills at 400mg each. So still a lot but that was like the “maintenence dose” for me. I have had this disease since 2001, and I know if I every missed a dose of asacol I would notice a flare starting so I learned quickly not to forget! I have never tried the diet though. I saw you were wondering about the diet with having a baby, I’m willing to bet it will be fine but maybe they will have you take suppliments or something? When I was pregnant I was eating a lot of milk and cheese. I did have to eat less breads/carbs/pastas because I had gestational diabetes the last 3 months, so I had to cut breads and sweets big time. And it was a little weird because I did not gain any more weight and I was worried the baby was not growing. Which wasn’t the case, she was still 7 pounds at birth. But think about this, some women get so sick with morning sickness they live off crackers! And their babies still get the nutrients they need and are healthy. :)

        • LaNae
          LaNae January 14, 2013 at 11:52 am #

          Thanks again!
          Ya I was on 8 pills too before – now 5 so I think that’s “reasonable”…….
          How is ur baby girl now?!
          I don’t take my pills at the “exact” same time everyday but I don’t think I’ve ever missed – good to know
          I feel like I’m getting better……. Next to no symptoms
          Would u ever try the diet?

          • KimberlyHI
            Kimberly January 15, 2013 at 1:10 am #

            My girl turned 1 on dec 30. She is…I don’t know how else to explain her except she is our sunshine, my husband and I just adore her. She is very healthy. She is little, not in a bad way but it seems most one year olds are bigger than her, chunkier at least! But she eats a lot. Like I was saying, she really helps me with everything in life including dealing with this disease, because she is such a joy that my life is now complete and happy and she just makes the disease less of a struggle. I mean I can’t give up or go to bed for 3 months, my little girl needs me! You know what I mean? As for the diet, I have been thinking a few months about trying it, I am honestly scared though, I am kind of a foodie, I love food. But I want to get better without all these meds too. I just struggle with the thought of no breads ect. Especially sweets, candy and desserts. How are you doing on it, what kind of things are you able to eat? I want to at least eat healthier if nothing else.

          • TiiniTete
            Tiinity January 15, 2013 at 3:44 am #

            I wanted to reply to Kimberly on the cravings part…

            I wasn’t a person who eats sweats before the diet and on the diet I have felt a lot of cravings… It’s been torture sometimes but if you know why you should keep going it just your mind. But after first week I was sitting for 2 hours in the kitchen crying one morning since I wanted “swedish princess cake” and I never, ever even slightly felt this way and I never ever have cake in the morning… So this made me laugh at the same time since it was so obvious the craving was insane. Made me feel like a junkie…

            Also the food is for kings and queens, never had this much delicious food!! And with time you start to crave good/proper food.

        • LaNae
          LaNae January 15, 2013 at 7:52 pm #

          LOL I tooooootally understand I would live of chocolate bars if I could! But I read Adam’s book and “Breaking the Vicious Cycle” and I was just blown away at the crap I was putting into my body. I never ate super bad – I like fruits and veggies but the sweets is the big thing. And at work we always have treats – its brutal but I just make sure I have my snacks and keep to it. It surprisingly has been better than I thought. Unless the worst is yet to come!
          I started the diet for a week – it definately takes some adjusting cuz you can’t just pop a pizza in the oven or open a pack of fruit snacks or whatever. Lots of planning but its just an adjustment. Then me and my husband went on vaca and I kinda lost it but I thought I would just go crazy and eat everything I never can again and then get back on track and that’s what I did. I’m nervous about eating out mostly cuz you don’t know all the ingredients. I have not felt hungry – I snack a lot and keep close to honey ;) cuz that’s my chocolate now.
          Maybe its just the drive of getting pregnant and having a baby and giving my husband kids that keeps me on track so far or being in control of my body and not relying on meds……… I eat lots of soup, eggs, salads, meat and veggies……lots of decent recipes in Breaking the Vicious Cycle.
          I hope I can encourage you guys to do it AND I forgot to say when I went off track there for a bit from being on the diet for a week I could TOTALLY tell that I was feeling heavy and sluggish again on crappy food – it was crazy – I feel great on the diet aaaaand lost 5lbs over 2 weeks. win win.
          Let me know what you guys decide!

          • Gail January 15, 2013 at 8:29 pm #

            Hi LaNae, nice to see so many great comments here. I just wanted to tell you I agree with Trinity – once you start eating really good, healthy food you actually do start to crave that. I especially crave a good salad if I miss a day. And regarding the weird sugar cravings, apparently if you have a an imbalance of yeast, or overgrowth of yeast (i.e., candidiasis) which probably most people with gut issues have, as the yeast are dying off it causes a bad withdrawal effect. The yeast feed on sugars, so when you cut down, or cut them out, the yeast will eventually die off. Taking a good probiotic will help maintain a proper gut flora balance. Back to the salad – I include all kinds of things in my salad like sunflower seeds, pumpkin seeds, grilled salmon, etc. I also make a simple dressing of organic orange juice, local unpasteurized honey, organic apple cider vinegar, good e-v olive oil and a bit of mustard. Yummy food!

        • LaNae
          LaNae January 15, 2013 at 8:53 pm #

          Thanks Gail! I was struggling with the salads a bit – especially the dressings – I love my sauces!
          Little off topic but has anyone started one of the Meetup groups at Meetup.com?

          • KimberlyHI
            Kimberly January 16, 2013 at 12:02 am #

            Thanks Gail, Tiinity and LaNae for the words of encouragement! I am starting to think I can do this. I am reading the book now and also bought a recipe book. It would be great to try for baby 2 starting in May. Going back to GI doctor on Jan 31, I want to ask him if I can get off Remicade and Imuran and go back on Asacol. I wonder if he will think I’m crazy.
            LaNae I read an article today about pregnancy and the SCD and the main concern is the lack of B vitamins in the diet, since the diet doesn’t allow grains. It was basically saying how the diet is soo restrictive it deprives us of nutrients and whatnot. I mean for me I am pretty sure it is way healthier and nutrient rich than the diet I eat now so…it probably wouldn’t be bad in my case.
            My daughter is actually really funny, she will eat things like green beans and spinach and salmon, and I’m like wow how much longer will this last before the only thing she will eat is cookies? I have a friend with a 4 year old and the last two years all he will eat is hot dogs and I’m like man that’s horrible, I am never feeding my baby hot dogs then!

          • TiiniTete
            Tiinity January 16, 2013 at 1:22 am #

            I’ve also heard the b-vitamins concern when taking away grains. Just this morning I did a fast google search and found this:

            http://www.livestrong.com/article/22253-foods-high-b-vitamins/

            I know livestrong.com might not be the best source but… Sure, grains are a b-vitamin source but so is meats, fish and leafy greens. Usually I found that the best source for minerals and vitamins is meats and fish… Except for some.

  6. Jen From UK
    Jen January 12, 2013 at 1:11 pm #

    I had symptoms in my first pregnancy but no diagnosis till after my second son was born… I was actually really sick between the 2 but during pregnancy was ok- had hyperemesis gravadium but given meds and me and both babies were fine. Since stopping breastfeeding I’ve been in a horrid flare and it lead to my diagnosis in August. Given the state I’m in at the moment I couldn’t try to conceive but it wouldn’t put me off in the future. Like Kim says having children and ibd isn’t so bad, they help you through… My youngest (16 months) always wonders to the loo calling mama if he can’t see me as its where i usually am! And my oldest (4) had me sword fighting with him while taking my colonoscopy prep and being tied to the loo- he said I was on it less than normal lol.

    Wishing you all the best and pregnancy blessings soon xxx

    Have started SCD and def feeling better

    • LaNae
      LaNae January 13, 2013 at 8:46 pm #

      Thanks Jen!LOL
      Its so encouraging to hear your story! I have felt so alone.
      Its the hope you see and bring that lifts my spirits.
      I’m sorry to hear you haven’t been well but I wish the best for you and hope you reach remission soon!
      Thanks so much

  7. Chris from Massachusetts
    Christopher from Mass January 12, 2013 at 1:14 pm #

    The answer for me was going Carnivore (straight up meat with nothing added – so I have to make my own)

    I also eat lactose free dairy and the fruits below:

    Most Kind to the Intestines:

    White grapes
    Strawberries
    Raspberries
    Blackberries
    Oranges

    Try it

    If you are concerned with the health of this diet just look up Gary taubes – he is the man. If you get constipated try warm salt-water enemas – they work wonders =)

    Peace =)

    • LaNae
      LaNae January 13, 2013 at 8:50 pm #

      Thanks for writing Christopher – I will look into your suggestions!

  8. Michaela February 7, 2013 at 12:36 am #

    I have 2 children ( 3.5 years and 10.5 months) and have had ulcerative colitis for 8 years. I was not in remission when I found out I was pregnant with my first child and let me tell you you want to be in remission if you can but it sounds like you are on the right track. With both my pregnancies was on the maintenance drugs (5 Asa asacol with my first and pentasa with my second) and have healthy children. However hormones have not been my friend and have had some of my worst flareup a post partum and have been on prednisone and breastfed both my children while on this drug. You do what you have to do whether it is nursing your child on the toilet (which I have done many times) to having to make my 3.5 year old wait for her breakfast because I am in the bathroom yet again (mornings are my worst times). I m currently in a flare and almost done prednisone and getting ready to return to work in mid march hoping to be in remission by then ( fingers crossed) That all being said having a family is great it gives you something to live for during the tough times. Best of luck! I am from Saskatchewan near Lloydminster, ab so not too far from you. If you ever want to talk or have other questions feel free to email me at mqb156@mail.usask.ca

  9. Jenny Mom
    Jenny March 21, 2013 at 8:58 am #

    Hey! So I am really wanting to get pregnant with a second baby (my symptoms didn’t start until after I had the first baby) and I just read your story. How are you feeling now, in March? Are you still in remission? Are you ready to start trying to get pregnant? I hope so!!
    My GI told me pregnancy during meds/ flares isn’t really an issue, because 1/3 of people get better and 1/3 of people stay the same. Only 1/3 get worse. Just a thought. He did say to hold off for me, though, since I’m newly on the meds and he doesn’t want to guess at what could be causing some symptoms… like if I am nauseous, is it morning sickness, or is it the medication? Etc. That made sense to me, so we are waiting… but it is SO HARD to wait! Sometimes I think, well, what is he going to do if I just start trying to get pregnant anyway? Haha. I know, not logical or healthful thinking, but still… :)
    I really hope that you are still in remission, and maybe even pregnant by now!
    Jenny

    • LaNae
      LaNae March 21, 2013 at 1:06 pm #

      Hi Jenny sorry I replied to the wrong reply!!!
      But I wrote u lol

  10. rjw March 21, 2013 at 9:32 am #

    Just wondered if you had an update? Have you tried anything else such as EVOO, FMT or something that you feel has worked other than Asacol? Thanks.

    • LaNae
      LaNae March 21, 2013 at 12:59 pm #

      Hi Jenny!

      Thanks so much for ur response and encouragement! I’m feeling fantastic!!! Not pregnant yet BUT we want to start trying in the next few weeks!
      I tooooootally understand its hard to wait – SO hard! My GI doc said to be in remission for 6 months before we start trying – I think we are definitely approaching that point but he may say otherwise (I see him April 11) but I hope he’s onboard – it would just feel better if he was. It’s so funny cuz I’ve totally thought those same things – like what if I do get pregnant – like we’re still gonna have to deal with it!!!! Ur not alone – I hear u loud and clear – I think it’s better to wait a bit – be “stable” for ur pregnancy. My GI doc is not very helpful so I’ve done a lot if research online. I guess it’s better to stay on meds and get preg than go off and risk a flare because with my experience they would stick me back on steroids (prednisone) which is worse for the baby than maintenance meds ( asacol- I’m on right now) meds. I’ve heard too whatever state ur in when u get preg that’s where u are likely to stay for ur pregnancy (ie: remission).
      I started on the Specific Carb Diet after Christmas and I am a huge believer! It’s super hard – and I do cheat here and there mind u I’m still on meds and I feel they act a bit like a safety net when I do cheat ( not that that’s accurate but…..). But just generally not pumping all that junk into my body- feels amazing!! And I’ve lost weight too. I think too how much better it will be for baby if I’m eating healthier too. It takes time and effort but there are some great cookbooks out there related solely to SCD! Check amazon.
      Thanks again and hang in there! I wish the best for u and ur family! And getting preg again!
      Please keep me in the loop
      How are you now?? Still have symptoms?? Getting better??
      When did u have ur last baby?

      -LaNae

      • Jenny Mom
        Jenny March 27, 2013 at 12:35 pm #

        Definitely let me know what your GI says after April 11… Praying that it’s a green light for you!
        Thanks for the encouragement to stay on target… fight this flare, THEN enjoy pregnancy. :) I think it’s been especially hard because I feel like I’m actually getting worse again… I improved for a few weeks, even had sporatic days with no blood! Then the last 4-5 days I’ve had lots more gas, blood, more urges to go, cramps, had to get up in the middle of the night, dry eyes… it’s like everything is coming back, plus some. It’s hard not to just get frustrated and think “Who even cares? I might never go into remission. Why put my life on hold just for the hope of that?”
        I had my baby last January 12, so she’s 14 months. My husband and I both grew up in families where the siblings were about 2 years apart, so that’s kind of what we were hoping for in our family.
        It’s funny, because I gave my sis-in-law two cookbooks for SCD for Christmas! She has had her colon removed, but unfortunately was misdiagnosed with Colitis and really had Crohn’s, so that didn’t cure her. She’s now faced with a permanent ileostomy, which is why she’s desperately trying EVERYTHING she can to NOT need that surgery. She’s been on SCD for about 6 months now, but sadly it isn’t improving her condition.
        So when you started the SCD, did you do the three weeks of just chicken broth and gelatin, or whatever it says to do? That’s the part that I’m super skeptical about. Like, I just don’t see how that could be healthy! Especially when I’m already so low on energy… I don’t think I can afford to do that.
        I think the other thing is that I’ve already pretty much cut out sugars (I just have a store-bought greek yogurt that I eat every once in a while that has a little bit of lactose in it) and I really don’t eat that many gluten products. I’ve cut out my morning English muffin, and I’ve started making rice rather than pasta for a dinner side dish. (Even that though… we never ate pasta EVERY night, it was only like 1-2 times a week.) The one thing I haven’t given up is Friday night homemade pizza. :) But that doesn’t seem to affect me. So I guess that’s why I haven’t fully committed to the SCD… I just am not sure that I’m eating significant amounts of “illegal” foods, so I don’t know that doing the official diet would significantly affect me.
        What are the things you cheat on? What are the things you definitely avoid?
        I think I need to ask my GI about Asacol… this Lialda doesn’t seem to be doing the trick for me, but I REALLY don’t want to do Prednisone… we’ve had bad experiences with that in several family members, and just hearing the word makes me feel sick even though I know it works really well for UC.
        Thanks for writing back!

        • LaNae
          LaNae March 27, 2013 at 6:56 pm #

          Hey!
          Sorry if I seem like a keener when I write back. It’s just so supportive to hear and meet people in the same boat – I found this website and it’s been like finding gold to me!
          I have never met a person that has colitis so it’s very encouraging to find others that understand what it’s like to have the disease, let alone, have the disease AND want to get pregnant too.
          Ok so here’s the story on the diet. I found it after christmas this year. Read Adam’s book and Breaking the Vicious Cycle but it was the WORST time for me to go off my meds and start it – risking a flare right before we want to start trying to get pregnant. Though tempting because I hate the thought of being on meds and getting pregnant. (sidenote: I heard that asacol is the same as Lialda but the coating is different – Lialda I hear is actually safer but we don’t have it in Canada)
          So I just started following the diet the best I could. So I guess I’m not “truly” on it. But I feel incredible. The OTHER THING

        • LaNae
          LaNae March 27, 2013 at 7:22 pm #

          OMG seriously I’m not that technically challenged lol
          yes the OTHER THING is people always ask what my trigger foods are and ……. there are none – like I’ve really watched and I can’t say that there are specific foods that trigger symptoms for me. I was so sold that this diet was the answer – especially considering what it did for Adam! So amazing.
          But what a life to live on this diet. I say its a simple thing to change a diet buuuuuut its NOT and food is such a social thing – its hard and it sucks.
          As the months have gone on I found myself cheating more and more and was certain that I could feel my symptoms returning slightly sometimes until I realized I had missed half my pills one day! I never miss – I thought the meds were bogus and weren’t even working anymore but apparently that wasn’t the case so for me right now I feel the meds keep me afloat and if what they say is true about the diet and only eating certain foods – I try and eliminate the illegal foods and I feel I’m doing my guts a favor (I could be wrong but that’s how I picture it!) I wonder too sometimes if there are certain things that are better to cheat with?? I don’t have a super severe case either so……….
          I LOVE chocolate but I find its coffee or specialty drinks in the morning that really get me and sometimes eating out – its hard to cook all day everyday for every meal! Like a pita for lunch – all legal inside but then there the bread pita outside……….
          And sweets now and again – its so hard to resist some days.
          I tend to eat boiled eggs in the morning – it really fills me up and I find the more meat I eat the more solid my stools are too. I’m not a huge meat lover so its tough sometimes and I eat a lot of fruit cuz its sweet! But that doesn’t really help in the bathroom department – keep me a little too regular ;) ;)
          No prednisone?? I hear ya but it was a definite life saver for me in the fall.
          Does IBD run in your family?
          What’s ur story?!? Can I read it somewhere?
          Is this the worst/only flare you’ve had?
          Keep the faith!!! I hope and pray the best for you too in the months to come!!

          • Jenny Mom
            Jenny April 1, 2013 at 7:36 am #

            Haha, I’m loving our connection/ conversation on here too! One thing that might encourage you is I actually found out that one of my friends at church who IS pregnant has UC… I never knew! I guess she was diagnosed when she was 12. She said at first her symptoms got worse, then got better, and I don’t think she’s on any meds, so it’s possible!
            My story is on here, I think under “Jenny Mom.” The short version is I started bleeding when Lizzy was 4-5 months old (April or May of last year), but it wasn’t very much blood. Went to my primary care doctor, and was told it was a big hemorrhoid, and to use Preparation H. I did for a couple of months, but the blood only increased. So when I went for a check-up with my OB/GYN, he looked at me and said it was definitely a hemorrhoid, and recommended a doctor in my area who specialized in banding those. I went to that doctor, he saw internal hemorrhoids, and tried 3 times to band them… absolutely no improvement. He suggested a colonoscopy in case the blood was coming from “something else.” We did it, he biopsied several places, and they came back all negative for any kind of inflammatory disease. (I think he read the biopsies wrong, or did something wrong.) At this point the number of BM’s was way up, plus urges to go with only blood and mucus coming out. (This was about November.) I was also feeling extra fatigued. He then wanted to test me for bacterial overgrowth and sugar intolerance. I was starting to feel like he wasn’t familiar with what I had and wasn’t really understanding what I described, so I looked up the symptoms of those things… NONE of the symptom lists included blood in stool, which was my first and main symptom! I was like, um, what??? So I took my records and went to a GI to get a second opinion. (The first guy was labeled “GI” too, but he had a D.O. degree instead of M.D.) The second guy said right away that what I was describing sounded like UC or proctitis, but he wanted to do a flex. sig. to be sure. So I did, and the biopsies came back showing UC. So I started Lialda the end of February, with Canasa for two weeks.
            The reason I’m so terrified of Prednisone is because I KNOW it makes me super weepy, like even within a day of starting it. I hate that. Also my grandma recently had to be on it for a LONG time, and she got all the physical effects- puffy cheeks and belly, and weight gain- but her personality changed SEVERELY. She because SO negative and even somewhat nasty about everything. She never went comepletely back to being as sweet and optomistic as she used to be, but she did get a lot better after a few months off of it. I guess I’m more terrified of my personality changing than my physical appearance.
            So yes, this is the only flare I’ve ever had, but it’s been going on almost a year now! I have no relations with IBD, but strangely have the two sisters-in-law (who also are not related by blood to each other) with Crohn’s.
            I’ve recently decided that diet has absolutely NOTHING to do with my symptoms, haha. Like you said, I feel more energy (and lost some weight!) just by cutting back on sugars, lactose, and bread… but then my symptoms got WORSE after cutting those things. Over this past weekend (Easter) I gave in and ate some cookies and a piece of cake (Saturday and Sunday). Then this morning I had NO BLOOD again. WHAT??? So, if I blamed diet, I would think I need to eat cookies all the time. Lol. I’m really glad that the diet works for so many people on this website, but I just am convinced that my symptoms don’t reflect what I eat. (I’ll probably still try to stick to no sugary stuff anyway, because I want to lose a little more weight… I’m a bridesmaid in May.)
            Thanks for the info on Lialda/ Asacol! I guess I’ll just see what he says when I go in next Monday… part of the reason I may have gotten way worse is that we are having some really stressful times with my younger sister, and I was kind of in the middle of responding to her and meeting her to talk about some stuff. It seems like everything has calmed down in my colon since we’ve gotten that talk over with, so maybe that was what set me off.
            Thanks again for the encouragement!

    • LaNae
      LaNae March 21, 2013 at 1:05 pm #

      Sorry I replied wrong – so tiny on here on an iPhone lol!

      I haven’t heard of those medications……
      I’m still on asacol and I feel with 4 pills a day I’ve reached a good balance with that and the diet- working for me now so ill keep pluggin along hoping this will carry me thru pregnancy soon!!!
      Thanks

  11. rjw March 21, 2013 at 6:16 pm #

    I wonder amongst other things on this website if your have researched FMT or EVOO? For some FMT has worked wonders with IBD while with others it has not. There is an interesting link on this site that Adam does an interview sort of speak with 2 doctors who offer FMT for non C-Diff UC suffers. There are other links as well that apparently teach you how to do at home with lets say your husband as donor.

  12. Sarah Kay Hoffman March 27, 2013 at 1:06 pm #

    Hi LaNae! I’m so excited to e-meet you here:)My WHOLE blog is about being a gutsy girl AND infertility. I’ve figured out the gut part, but still not the baby part. It’s been a long journey. Happy to connect anytime:) hugs

    • LaNae
      LaNae March 27, 2013 at 4:59 pm #

      What’s your story Sarah?!

  13. Keri B. April 11, 2013 at 8:49 am #

    LaNae,
    I totally understand your concerns and goals. BTW, I have not read all the updates and comments, so I hope I’m not missing something important. Just wanted to let you know that healthy pregnancy and babies are possible (even on Asacol)!
    I actually have a very similar story to yours. Married in 2004, six months later my first big flare (had mild symptoms before, but just thought it was stress). It took six weeks to diagnose (during that time, I lost over 15 lbs.). Started taking Asacol 3, 400 mg tablets, 3 times a day. Was in remission very quickly. I was (and still am) horrible about staying consistent taking my meds. I got pregnant in 2007 after three months of trying. I never felt better in all my life! Pregnancy really helped me stay in remission and I was able to taper of the meds to 1, 400mg 3 times a day. I didn’t want to risk a flare, so didn’t go off meds completely. We had a healthy baby girl and was able to breastfeed too.
    Fast-forward to when my story changed. At my last appointment a year ago, I realized that my doc wasn’t really listening to me and we had BIG differences of opinion. He switched my Rx to 800mg tablets and said he wouldn’t even run any more tests on me till I was faithful on taking his dose of Asacol for 6 months, even though I’m completely symptom free!
    I’ve felt for a LONG time that the meds were just covering up the symptoms and not doing anything to heal me. I had to find a way to do that myself, through changing jobs and made adjustments for a lot less stress in my life, along with chiropractic care and nutritional changes.
    I am not totally giving up on medical doctors, I plan to see a different specialist 3 hours away after this baby is born. I just feel I need a second opinion and a doctor who will listen, not just go by his referral check from the drug company.
    We now have two kids, and another on the way. Life is good. I hope that you are able to find what works for you and have a new little joy in your life soon!

    • LaNae
      LaNae April 11, 2013 at 4:15 pm #

      HI!!! Omg thank u so much!!
      Ur response couldn’t have had better timing!
      I saw my gi doc today – stopped bc Monday. He said that because I wanna get pregnant so bad I need to switch to salofalk now instead of asacol because it MAY be better for the baby. It’s so frustrating because I’ve told him numerous times we wanted to get preg once I was feeling better NOW he says another 12 weeks on salofalk to see if I flare! And what if I do???? Back to the drawing board and steroids!!!! Ahhhhh
      I’m getting my new meds as we speak trying to compose myself until I can let the tears flow on my drive home.
      I don’t know what to do Keri!!! Because I have read tons on women having healthy babies on asacol and now my bc schedule is all messed up on top of things too.
      I know the doc is seasoned and probably knows what he’s talking about but we wanted to start trying a year ago and the wait has been so tough already! I feel it’s so in reach and now just got tugged out if my hands again. I want a healthy baby but I’m stable now!!!!!!! It seems ideal………………..
      Should we start trying? Is this happening for a reason ?

      • LaNae
        LaNae April 11, 2013 at 6:12 pm #

        We’re u on asacol for all ur pregnancies??

  14. Sharon May 18, 2013 at 8:06 pm #

    I just read this entire thread and I want to cry. You are all trying to be so positive but sound so stressed. I have had UC since I was 19. I am now 42. My healthy children are 15,13,9,and 7. I took Sulfasalizine with the first 2 and Asacol with the last 2. I felt great throughout my pregnancies but flared after every one. I nursed the first 3 for almost a year each (yes I have nursed while on the toilet). My milk never came in with my youngest but he is most definitely a healthy kid. I was incredibly blessed that my first OB/Gyn was about 75 years old and he had UC. He told me my medicine had been around for longer than he had and that he had complete confidence that a healthy mama and a healthy baby were indeed possible. I didn’t stress about my diet, I just ate whatever I felt my body and baby needed. If something didn’t agree with me, I didn’t eat it. Personally, I have never had any food put me into a flare with just one helping. Of course, when I am already flaring food choice is very important. I would highly suggest staying away from aspartame as much as possible, but really, just eat real food. As for timing your pregnancy perfectly, you can’t.I happen to believe that if your body isn’t ready to be pregnant you probably won’t get pregnant. I do know that if you stress about when to try, what to eat, will I pass on the genes, etc you are more likely to flare and less likely to become pregnant. So relax and enjoy practicing baby-making:) Once the baby comes you won’t have time for that anyway. BTW, Lialda is basically a time released version of Asacol allowing you to take all your meds together instead of spacing them out throughout the day.

    • LaNae
      LaNae May 19, 2013 at 7:29 am #

      Hi! Thanks so much for ur response!
      I really need to post again but I am doing fantastic! And we have decided to try and get preg on asacol so standby!!!
      As for my diet …… I’ve relaxed a lot – at this point I feel the meds mask a lot so I continue to try and eat healthy but nothing too strict

      I appreciate ur feedback so much

  15. Sharon May 20, 2013 at 3:36 am #

    Awesome…best of luck.
    Sharon

  16. Samantha May 25, 2013 at 10:19 pm #

    LaNae,
    First of all I just want to say I completely understand where you are coming from, I’m 25 years old and was diagnosed with uc in 2007 right after the birth of my daughter, after taking asacol and prednisone I finally went into remission a year and a half later and have stayed that way until recently. We found out April 5th after 6 months of trying that we are pregnant with our second child and within three weeks I started having a flare. I have talked to my doctor and he thinks that it is best that I be put on asacol. I also have a good friend who is 5 months pregnant and just found out she has ulcerative colitis, but have heard of multiple stories where a flare was no issue during a lot of womens pregnancies, I think it really just depends. As I do agree that you should be healthy before getting pregnant, I don’t think the fear of having a flare should stop you from your dream, it took me quite a while to decide “to risk it” but I would not change it whatsoever!! I wish you the best with any decision and happy babymaking!!!

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