recent picture!
It’s been a long time since I’ve posted anything on this website. A lot has happened to me – I changed jobs, got married, lost a parent….. all these things are stressors and have affected me in one way or another.
Something Interesting About Lara:
I love to nap! This could be because I’ve got a chronic illness and I need more rest than the average person, but I will try to get a nap in whenever I can.
Let’s start at the beginning:
I was diagnosed with Ulcerative Colitis five years ago.
My husband has been very supportive throughout this entire experience, which I’m thankful for. We had dated 6 years before we actually got married (and have been married now for almost 2 years). I love my husband, but planning a wedding and actually learning to live with each other was difficult. We had never lived together prior to being married and I was nervous because I couldn’t “hide” my UC symptoms. Not that I think I did a good job of that before, but I was still nervous nonetheless. During that time I had increased frequency, not always formed BM’s, blood, some pain, etc. Once things settled down a lot of those things subsided, but not all the way.
Next, my mom gets admitted to the hospital out of the blue 6 months into my new marriage. She hadn’t been in the best health and I think the family thought she’d be there for about a week and would then go home. Only it didn’t work out like that. She was admitted for kidney failure and some other things – it’s a blur so I can’t remember it all. Her body couldn’t handle the dialysis and she passed away 3 days after her admission. That was a ROUGH time. It was sudden. I was heartbroken that I was starting this new phase in my life and I wouldn’t have my Mom to talk to. She was the one who took care of me when I was first diagnosed and throughout that horrible flare. My symptoms began to increase again. Stress will do that. I barely made it through the funeral – I had to run to the bathroom several times. My Dad became very worried about me and my husband made me rest. I saw my GI doctor and he didn’t add any medications, but wanted to do a colonoscopy.
Lara on the right!
I get the colonoscopy and not much healing is taking place. By now I’m on Remicade and Apriso. He wants to add Uceris and I start taking that. I hated Uceris – it gave me horrible mood swings, but I did notice some relief of my symptoms. I did a follow up with my doctor and he recommends that I see an IBD specialist when I tell him that my husband and I would like to start a family. He also adds Canasa to my regimen. I wasn’t thrilled about giving myself suppositories, but it did help. Though not all the way….
Fast forward…
I work in healthcare and we had our annual state survey. It’s always unannounced and that left me working 12-15 hour days, not eating right, etc. Symptoms came back with a vengeance. The day after the exited I was scheduled to get a sigmoidoscopy. Looking back on it, I guess the timing was ok because my doctor could actually see what stress does to my body. And the stress showed some bad things – lots of inflammation and bleeding.
I go see the IBD specialist the next week and she recommends that I not try for a family right now. My body just isn’t ready. She also recommends I start on Rowasa enemas and do some specialized labs to see how I’m handling Remicade. She recommends I get off of Uceris, which I’m only too glad to do! She also categorizes me as high risk, so I now need to find a high risk obgyn when trying to get pregnant and care for me throughout my pregnancy. Lovely! All these results are forwarded to my GI doctor.
I started on the Rowasa and notice almost immediate results. Solid BM’s, no blood, 1-2 times per day….. Life was good!! I also did these specialized labs and it turns out that I’ve built up antibodies to Remicade. Fun! So it’s no longer effective and I get to start on Humira.
Let me first say that Humira sucks. I was prescribed the pen and it hurts. Truly painful!! I did my first dose today – 4 shots – at the doctor’s office. It was rough. But I’m at least proud that I was able to do it myself. Right now I feel tired, but I did just get a mega dose. Hopefully this will help get me healthier. I’m to give myself 2 more shots in 2 weeks and then 1 shot ever other week from here on.
Questions:
[highlight] 1. Has anyone been on Humira while pregnant?
2. How has pregnancy been with your UC in general?
3. Any issues in getting pregnant?[/highlight]
Current medications:
Apriso
Humira
Rowasa
Past medications:
Remicade
Uceris
Canasa
Prednisone
written by Lara
submitted in the colitis venting area
I’m 31 years old and have had UC for five years now. I have come a long way since my initial flare and am doing much better now.
Hi!
I don’t have any experience with Humira. I’ve had two courses of steroids since diagnosis and I’m currently on Azathioprine.
I had no issues getting pregnant after I’d waited to try on doctors advice. I wasn’t perfect when we started trying but I was doing well.
I fell tje second month of trying but I had a miscarriage the first time round. Then 5 months later we tried again and I fell the first month!
My UC was fine until I had a really stressful month that put me into a flare. I had a two month taper of steroids that ended 6 weeks ago and I’m fine again now.
I’m due November 5th!
Listen to your doctors advice about waiting to try. Get all your other bloods checked for your vitamin status to see if you are low on things like folic acid, iron and vit D.
Most of all, I changed my whole life to reduce stress. I worked from home after I was diagnosed and am now on maternity leave. Stress will hinder any chance of getting pregnant as well as flaring.
I know money is important but try and find a way of earning a living that reduces stress levels.
Nothing is worth more than your health.
Good luck with your baby making!
I have been monitored very closely, with extra growth scans etc. My baby is at the top end of the growth chart so UC hasn’t stopped me from growing a big baby!
I wasnt even 8 stone when I got pregnant and now I’m over 10 stone with two months to go! And that was with a flare up at around week 16.
Laura x
Hi Lara,
My daughter (26) has had a simliar experience as yours. She began Humira about 3 years ago after no meds worked for her at all, and it has been a life changer. She ended up with taking a dose every week, but her life is now completely normal. She also suffered from pancreatitis since she was 15 having 3-4 episodes a year. Since she has been on Humira, she has never had another Pancreatic attack.
She hates the shots, but loves living a normal life….
She got married this year, and when she met with her GI doctor he felt compelled to tell her all the good news about Humira and pregnancy…(she is not ready to start a family yet, but good to know info). He told her that after many years they have found that Humira does not pass through the placenta, so you can continue your normal use while pregnant. A remarkable breakthrough, as if you go off Humira, you may never be able to take again as body might fight it. So, best wishes to you…I wish you well and hope Humira will be a life changer for you as well.
PS…I am the Mom that is always there for my daughter as well, I know it must be so very hard for you. So happy you too found a good partner in marriage.
Kelley
Hi Lara,
You’ve gone through so much, how brave of you to share it all with us. I hope that you continue feeling well!
My UC manifested during my pregnancies. (Often, the opposite happens.) I’d had hints of issues before, but it was with pregnancy that the bleeding, urgency etc really started. I hoped that it was a fluke with the first child, but with the second it was even worse. It was really hard being so sick that I couldn’t care for my babies, and being hospitalized while they were small.
Happily, my worst symptoms are under control now with medication (lialda and synthroid) and diet (paleo with fodmap overlay), and life is pretty normal. My husband and I decided that if we want to have more children, we’ll adopt. I’d always wanted a big family – this was a really tough decision for me.
I know how scary life with an autoimmune issue can be. I wish that I had more advice to share, and can only say that there are so many different ways to make a family. It’s worth considering them all.
My very best wishes,
Catherine
I got pregnant while on Humira! I had just started it and ended up pregnant (how’s that for a side effect haha)…I stayed on it my entire pregnancy, along with prednisone. I saw a high risk OBGYN because of my meds, but he wasn’t worried about anything that I was on. He put me on a high dose of folic acid since prednisone affects the absorption. I tapered the prednisone since between the Humira and the pregnancy I wasn’t having any symptoms. I finished the pred taper around 7 months pregnant, still no symptoms, other than a brief mini flare when my husband had surgery and was hospitalized. I began doing weekly shots around that time, instead of the normal biweekly. I stopped shots at 36 weeks (there’s some placental transfer with Humira in the 3rd trimester) and started Uceris…still felt great. Had an easy labor and delivery, felt better than I had in years afterwards. I started Humira about 2 weeks later but started flaring around 10 weeks postpartum. I kept in touch with my GI doc but never went in to see him…continued to flare and be miserable while going back to work and caring for an infant and a toddler. I finally saw my doc in May and he reminded me that I should’ve seen him sooner. He switched me to remicade and I’ve had 3 infusions so far, I go for my fourth on Friday. It hasn’t helped 100%, and my doc wanted me to start taking Imuran which helps reduce the risk of developing antibodies. I was getting terrible headaches until I started taking my meds at night. I tapered the uceris after I started the imuran…I’ll also go for bloodwork on Friday before I have my infusion so we’ll see what that looks like. I have been getting worse over the last month, lots of urgency, several trips to the bathroom and cramps. I joke with my husband that I just need to stay pregnant since I felt so good during and right after! And I’ve been breastfeeding this entire time, and my daughter will be 11 months in a few days. Let me know if you have any questions, I was originally diagnosed when my first daughter was only 14 weeks old, back in 2012!
Hi Lara,
I have had UC since I was 16 (am now 35) and got pregnant with my second child in July of 2015, right after I had started Humira. I was on Humira throughout the whole pregnancy and delivered a beautiful, healthy baby girl on 3/29/16. Unfortunately, in Sept. of 2015, I suddenly got very sick and was admitted to the hospital. Long story short, I essentially had no immune system thanks to the humira, which caused me to become septic and I almost lost my life. Humira never really worked for me, but I feel like I stayed on it because I was pregnant and didn’t want to rock the boat. I was going to start Remicade shortly before I got sick, but obviously that was out of the question after my illness. I am now on Entyvio, which is also safe for pregnancy, and have been in remission since being on this drug. It has been great for me. No side effects and it is a short 30 min infusion. You do have to go to a clinic or a hospital for the infusion, but totally worth it in my opinion. I also breasted by daughter on Humira and that is totally fine too. Full disclosure, I already had immune issues prior to Humira so was probably at heightened risk, but those drugs are no joke. Honestly I don’t know why they try biologics before Entyvio. Entyvio is specifically for UC patients and targets the colon only. If you would like to discuss things more, please let me know.
Anyone breastfeed on entyvio?
Hi Lara,
Give a check out to the Pregnancy and UC Survey that we did a few on May 3rd 2013.
There were 107 people who participated (with pregnancy experience..:) and there are many personalized stories with ideas etc…
here’s the link to that:
https://ihaveuc.com/pregnancy-and-ulcerative-colitis-107-person-survey-results/
Also, here is the Humira reviews page that might give you some more insights into other UC’ers comments about Humira:
https://ihaveuc.com/humira-reviews/
More than anything, I wanted to say thank you for sharing your story here, and all the pictures you shared, and I can’t wait to hear that you have started a family sometime in the future.
Big pat on the back to your husband for being so supportive as well, its these unsung heros sometimes who make all the difference in our lives, and for sure it is APPRECIATED!
Best to you Lara,
Adam
Ugh! I hate having uc….I was diagnosed in 2102…overall had 2 flares a year since. Last year at 33 I was thrilled to find out I was pregnant! I was tapering off a low dose of prednisone at the time. I was fine for a while then I got sick and sicker and found out I had cdiff, which made my uc angry and horrible. I was hospitalized for 25 days, pregnant, with horrible flare ( going to the bathroom up to 27 times a day at worst) was put on steroids and started remicade july 12 at 17 weeks pregnant.
At 18 weeks they said my baby was a week behind in growth but I had lost about 15lbs and was malnourished do to being so sick and was on tpn for 10 days. Was finally feeling better and released from the hospital. Started buy a crib, baby registry, etc.
On july 25 I get my second dose of remicade. The next morning july 26 I went for an ultrasound at 19 weeks 3 days. I was told my baby no longer had a heartbeat
I was induced and was in labor 26 hours and gave birth to my beautiful son Ezra Charles on July 28, 2018 at 1125pm.
My son had the cord around his neck, and I found out I have mthfr and antiphospholipid syndrome.
My heart is forever broken for my first born son. My spouse thinks Im too sick and shouldn’t try again for another baby, but being a mom and watching my children grow up is the one thing I have always wanted. I Want to at least be off steroids before I get pregnant again and pray I can have a healthy baby.
So Im still on remicade, been sicker and had slight flare so I have been on uceris for 4 weeks, and uceris foam for a few days. Been on lialda for years. In the last week my symptoms are worse. So Im beyond angry and frustrated. Going to look into stem cells for uc tomorrow and pray that may be an answer for me.
Hi Lara,
I love naps too!!!
Looks like you got some very helpful advice from the ladies above.
I agree that you should wait to try if that’s what the IBD specialist says.
So I am 32 now and for the first time since I got married I actually got the green light from doctors to go ahead and try to get pregnant. My husband and I have been trying for 9 months now and… nothing. Some people with UC are able to easily get pregnant, some are not able to, some get pregnant and have miscarriages… there are so many variables, there’s really no way to predict. If you have more than one autoimmune disease, you are much more likely to have fertility issues… so if you also have Celiac disease, Hashimotos, or RA or something along those lines… it will be more difficult to get pregnant. If you are also hypothyroid (under-active thyroid), or have adrenal fatigue, or chronically low cortisol levels, it will be more difficult to get pregnant. Since you are chronically fatigued, maybe you have an under-active thyroid and/or have adrenal fatigue??? My husband and I have decided to go the adoption route (adoption was our first choice anyway, since I’m not sure how my body would do handling a pregnancy… but the adoption process is a looooooooooong wait). Medically it’s not impossible for me to get pregnant, but it seems unlikely. I have IBD, plus hypothyroidism, and I likely have Celiac disease. So anyway, I am rambling. To summarize, you may be able to get pregnant easily when your body is ready, but you might not.
I agree with the advice above that you should consider something other than Humira… I would not want to go through a pregnancy with my immune system intentionally lowered.
Some good news: statistically autoimmune diseases go into remission during pregnancy. :)
Hugs,
Polly
Hi!
I’m going to be brief here. I can’t explain it, but when I had my daughter my symptoms were terrible. I was on Lialda. I just got through it with the help of Canasa at bedtime. Fast forward 2 years later and I’m pregnant again. Felt great, no symptoms for 9 months! No Canasa and I stopped Lialda! I never wanted to know the sex of my children. I kept telling everyone that I was 100% sure I was having a boy the second time since I felt so completely different. Well, I had a boy. My wish is that you feel well enough to become pregnant and enjoy 9 months with no symptoms! Good luck!
Hi Lara,
I developed UC at 18, my first year in college. I got married at age 23 and had my first child at age 25. When I was pregnant, I took nothing and I felt great. I could eat anything. I think it was the way my body took care of the baby by taking care of me. I had some flare-ups when I was young, I am now 57 so I have had UC for almost 40 years. My Dr recently wanted me to go on Humira and I found LDN which I wanted to try first. I have been feeling better but I will know for sure in my next colonoscopy. LDN can definitely be taken while pregnant with no side effects. Can breast feed on it also. My Dr didn’t want me to take it so I had to look elsewhere to get a prescription. It’s a medication for all auto immune illnesses and for inflammation.
Good Luck and feel good.
I have never heard of LDN. I will have to research it. Just curious, but what was your doctor’s hesitation to you taking it?
Thank you everyone for your comments. I appreciate them. It seems like there is no clear cut path with UC, which appears to be pretty standard. I really liked being on Remicade, and I’m a little sad that it no longer works for me. But change happens with time. I will try Humira and see how I do. It’s only been 24 hours, so I think it’s too soon for me to tell if I’m having any results yet.
My obgyn (not a high risk one) did tell me to add folic acid to my medication routine. But since I don’t have the ok to move forward with trying to start a family I eliminated that. None of my doctors seemed to have any issues with that, so I’ll get back on it when I have the green light. I plan to make an appointment in a few months for my yearly checkup with a new doctor, per the specialist’s request.
I do have appointments with the specialist and my GI doctor in October, so I’ll just wait to see what they have to say then.
Hi lara!!
I’m 30 years old and I was diagnosed with ulcer colitis when I was pregnant with my first born. My GI dr did a small colonscopy he didn’t go all the way through. So he gives me medicaton while I was pregnant I don’t remember the name but I’ll ask when I see him next week. I actually did okay i had diarrhea through my whole pregnancy it sacked but I am so thankful to have my son that’s all that mattered to me. Then after I had my son is was very well no flares up at all everything was good. Then I had my second son I didn’t take any medication with him I was good. But after I had him I starts feeling sick only because I started my bad habits I love coffee I’m such a coffee drinker. So I started to flare up again it was real bad but thank god my GI dr squeezed me in his busy schedule. So now I’m ok im so so. I don’t have pains is just my BM is not all there yet hopefully the GI Dr will give me another medication to help that. But I would speak to an OB/GYN maybe the Dr would give you options you never until you try right. I wish you the best! I hope everything goes well!
Hi Lara
My daughter was diagnosed with UC 2 years ago at age 16. Initially she was on Lialda, prednisone a prescription Nexium. I knew that there had to be another way. This medication had too many side effects and although the bleeding stopped she wasn’t gaining weight or feeling any better. The GI doc wanted to put her on Remicade saying that it would be easy coming in once every 2 months for shot and everything would be fine! What about the horrible side effects! Have you considered going to a functional medical doctor and a functional holistic nutritionist? They can help!! My daughter now takes supplements to heal along with a medical food shake by Metagenics called UltraInflamx Plus 360. She is gluten free (very important to control inflammation) dairy and yeast free. She has been off all prescription meds for over a year and is thriving. Please just don’t go off of your meds on your own. These doctors pulled this all together along with the nutritionist and made a plan. Once the supplements were taken for a few months there was a gradual decrease in medication until it was finally stopped. Also a good acupuncturist can help too! Something to think about. Wishing you the best .
Hi Lara,
I have had UC since I was 8 years old (am 37 now). It was mild until age 34 (the year of my wedding). I went on Remicade, which was a miracle drug for me. After the loading doses, I became pregnant on our honeymoon and stopped the Remicade. Although it worked wonders, it made my hair fall out. A lot. I wasn’t comfortable being on it while pregnant. Also, progesterone acts as a natural immune suppressant, so many people who get pregnant are fine without meds. I had a bad flare 5 months post-baby (exact time of returning to work) and resumed Remicade for a short time. My last flare resulted in serum sickness (antibodies and severe reaction) with Remicade and I switched to Humira instead. We got pregnant again this summer, and I stopped the Humira. I just can’t help but wonder what it would be doing to my baby if it is making my hair fall out in clumps. Unfortunately, we had a m/c. I have decided to go on Low-Dose Naltrexone and low-dose progesterone to keep from flaring again. I definitely do not recommend getting pregnant during an active flare. There’s a much higher rate of miscarriage. If you are healthy and feeling good with Humira, you should have no issues getting pregnant. It really is a personal decision about staying on meds during pregnancy. You may have plans to do one thing, but change your mind once you are actually pregnant. Also, you should be able to just do a consult with Maternal Fetal Medicine (high risk OB) while pregnant and see a regular OB (or midwife) while pregnant. Although, a benefit of being “high risk” is getting more ultrasounds. I got them since I was “advanced maternal age” and not for anything colitis related. Best of luck to you! It is such an exciting time!
Hello Lara,
I can totally empathize and understand your situation with stress causing your colitis to worsen. I too have a terrible body reaction to stress so I had to find some ways to reduce that in my life. I have had ulcerative colitis for 8 years. I have been one of the lucky ones in which thru that time I have only had a few bad flare ups in which I was able to resolve with some time. I too wanted children, especially since I am 35, my biological clock is ticking. I had a very bad flare up last year in which I was hospitalized for a week. They put me on IV steroids which eventually helped but I was still experiencing symptoms. I was against going on meds because I did want kids. But that is the approach I took. I decided to change my diet completely. No white or wheat flour, nothing with corn and limit my dairy. I also took up meditation to help deal with stress. At first it doesn’t seem like it helps, but the deep breathing and freeing your mind of thoughts really helps. It took about 5 months but I eventually became symptom free. I did do research on uc medications, in case I had to go on them when trying to get pregnant and they are safer to be on them then having a flare up while pregnant. I also heard too that statistically uc flare ups decrease because of pregnancy hormones. I am happy to say that after 2 years of ups and downs that I delivered a healthy baby girl 2 weeks ago. I never thought it would happen for me, but it did. It will happen for you. Just remember that it is just as important to take care of yourself mentally as well as physically. Best of luck and as hard as it is try to stay positive and focused on your goals. It will get better.
Hello Lara,
I waited until Entyvio clincal trials were over and started it over a year ago. I have been in full remission ever since with no side effects whatsoever. I suggest you review it and talk to your GI doctor about it as an option. I rejected Remicade and Humira, but liked what I learned when I researched Entyvio. Yes, eliminating stress is essential, but there are times when life’s events make this difficult.
Hello Lara,
I waited until Entyvio clincal trials were over and started it over a year ago. I have been in full remission ever since with no side effects whatsoever. I suggest you review it and talk to your GI doctor about it as an option. I rejected Remicade and Humira, but liked what I learned when I researched Entyvio. Yes, eliminating stress is essential, but there are times when life’s events make this difficult.
i am 41 years old. i have ac since my 17 years. i don’t know all these medication you have mentioned. i only used azathioprine and cortisone. i have three children 20, 18 and 12 years old. during my pregnancies i had no symptoms of ac at all, i could eat anything and those were the healthiest times until then. i had no issues of getting pregnant. each case is different. after each pregnancy i was reeeeeally sick. i could not take care of me or the baby or breastfeeding because i was admitted in the hospital for a couple of weeks. i wasn’t taking any medication throu my pregnancies.after my third pregnancy i asked my doctor to start immediately medication so i will not need admin in the hospital and he said no. the moment i delivered my third child i started azathioprine immediately . that helped me a lot !!
i didn’t need the hospital this time!!! a week later i was much better with just the pills !!! no cortisone with blowing and growing hair everywhere effects !!! since then i became my own doctor. i visit the hospital twice a year. once for colonoscopy and once an appointment with my doctor. no medication the last 12 years except 5-6 times a was a bit sick. my body was used to high doses medication at the past and they were not effective. now when i get a bit sick they are drastic and help me immediately, in a couple of weeks i’m ok again !!! i hope i helped !!! stress is the worst that causes colitis symptoms…so try to be calm …
I was on Mezavant XL while pregnant – that’s the name of the medication in the UK, it’s the brand of mesalazine tablet that I was on.
I got my diagnosis of UC 4 months before I got pregnant, and started Mezavant and Salofalk foam 2 months before. My UC got quickly under control and I was symptom free all the way through my pregnancy and while breastfeeding. Unfortunately I have been flaring intermittently since then (son is now nearly 2 1/2) and am only just reaching a point where I can think about trying to conceive no 2.
It took me a total of 16 months to get pregnant, but I had a very irregular cycle (talking anything from 30-90 days!) before I received medication for the UC – wonder if the inflammation had been causing a disruption in my cycle.
All of the information that is out there about ulcerative colitis states that there is a genetic component to this disease. Did you consider genetic testing? I would hate for any child to go through what we have been through with this disease and would always encourage my son to adopt once he wants to have a family.
Hi Lara,
I have had two pregnancies before my diagnosis of UC & IBS. I was not on any meds. but was experiencing significant amount of pain during my pregnancies. Exercise and a healthy diet helped me through this time. Ultimately you are the best person to judge if you are or are not ready to take such a major decision. I was very young and was not experiencing such acute symptoms of my disease when I decided to start a family. Good luck!
Hi Laura,
I’m in a very similar situation, I’m 31 and I’ve had UC for nearly 10 yes. I’m very lucky that my UC is really stable right now, kept in check by Asacol and Azathioprine (Imuran).
I got married last year and we now want to try for a baby. I’m in the UK so this is probably different advice than you’re getting, but I’ve been told to take high dose (5mg compared to 400milligrams) Folic Acid for six months before we start trying.
My gastro specialist had been suggesting trying to get me off the azathioprine if we can, but my specialist nurse has ruled that out while we try for a baby so as not to upset the currently stable situation.
I find it really interesting that people can come right off their meds during pregnancy, I’m not convinced I’d be brave enough to try it! Although I do wonder what azathioprine in particular can do, even though I’m assured it’s safer to take it and be well in pregnancy than not.
Anyway I hope your specialists give you the go ahead soon, good luck
Best regards,
Katie
Apologies my phone autocorrected Lara, sorry!
I am here to share this testimony on how me and my husband was able to be become parents. we tried for so many years to get a child of ours but there was no success of child bearing. We went to different hospitals but they keep saying the same thing that i was the problem and my husband was perfectly okay. One day i decided to try traditional and spiritual help, i contacted a woman who i came across on the internet called Iya Basira i ask her for help and she told me that i was the cause of me inability to bear a child. I became more confuse and worried and at this time my husband was making moves for a divorce. I told the woman everything and she decided to help me, she told me she is going to help me by praying for and given me traditional medicine to drink, that i will be blessed with a child. At the end of the day i followed her instructions, because i wanted my husband to see it as a miracle because he was a strong christian. I did all she ask me to do and i got all the results i needed without my husband knowing and today am a mother. Thanks to mother Iya Basira i will forever be grateful. i will drop her contact here anybody needs her help also nativeiyabasira@yahoo.com