Pregnancy experiences/ birth with UC/UP please

Hello everyone,

So I’m very newly diagnosed with UC proctitis, I’m 32 weeks pregnant, i’m currently mid (first) flare… which is very mild from what I’ve read.
I’m having 2 mostly formed, in one way or the other bowel movements per day, not too much urgency, usually with a little blood and some mucus, but not pain ( thank the lord)

I am not on any meds as yet, i’m still waiting to be called by my local IBD team … I just received the diagnoses this monday.

As my pregnancy moves forward i’m now a little worried as to what lies ahead. I’m aware, like with so much of this disease, that nothing is predictable in any way shape or form.

I’m Worried that my pregnancy has kept this all a little mild, and after birth its going to come on raging. Just wondered if you guys have some tips to help me feel a little more in control if possible?

Thanks in advance. Kate x

If you search the forum, you will see that TotesMagotes has lots of posts on this topic. I haven't seen her online in a while, but there is still some good info in her threads. Hope all is well. Crispix has good advice and I absolutely agree that you should have a plan in place before you need it! I didn't develop UC until my youngest was 3, so I have no personal experience with this. Hope all continues to be easy for the rest of your pregnancy!

thanks for the replies

Since i posted the IBD team have phoned me and discussed treatment. So i can pick up my prescription tomorrow. They are starting me on ansocol? (not sure thats spelt correctly) suppositories for now, and we will re assess after birth, we will be in close contact and i can phone anytime if my symptoms change in anyway. Also to phone immediately if i’m not happy with the treatment in anyway.

Ladies thank you for the baby centre info… I’m in the uk, but i am on that site so will look for a different thread!

Ipoop totally agree just got to deal with it as normal.. just annoying since my body is not normal at all right now (not UC related) But being preggo has uneased me as i’m yet to deal with UC in my “normal” circumstances. But thank you again for your information

Hi kloz31!

I'm sorry to hear you developed UC while pregnant. I had the same happen to me but unfortunately it went undiagnosed for a long time - proctologist kept on saying it was "just hemorrhoids" and was confused as to why I had so much pain...

Anyway, I thought I focus here on the actual birth and share my experience with you since I gave birth during a UC flare-up as I had no idea I had it...
My symptoms started possibly around my 6 month of pregnancy, loose stools and diarrhea but the Dr. said that it's normal for pregnant women to have diarrhea so I didn't worry. Around week 37 I felt like my pelvis was cracking open every time I went to the bathroom and I felt little I had a cattle prod in my rectum (sorry for the language but there is no other way I can describe this). Once I passed out from the pain while pooping
My advice to you is don't let it get this far if you can. How? I don't know anything about your life but if you work and have stress try to scale back on all of those even if it is financially difficult. Once your UC gets really bad it's harder to come back.
I had a natural, unmedicated birth, so it's possible. It was really hard because I think that I was having birth contractions and intestinal spasms at the same time. I did Hypnobirthing for my daughter's birth and I believe it really helped. Here is what happened to me after the birth. I hope none of this happens to you but I am sharing in the hopes that you might be able to better manage your UC and the toll it takes on your body and family.
Right after the birth I was in the bathroom and felt a little gassy, next thing I know the entire floor is covered with a beige mucus. This is such a clear sign of UC and I can't believe no doc caught it... Anyway, I was not able to control my bowel movements for three months. I spent these months in adult diapers (waaaay better than cleaning your clothes all the time). I got a big pack of Depend (US brand) and found that they are better than using pads after birth anyway.
I breastfed my daughter until she was 18 months. I can probably write a book about medications/breastfeeding and UC, so if you have any questions even after birth just send me a note or reply here. I would say that 50% of the breastfeeding was done in normal places and the rest on the toilet (yep, you read that right). I had a nursing pillow and would just sit on the toilet and breastfeed my hungry baby. It's possible to do if that is what you choose to do (don't let anyone tell you what you should or shouldn't do - the choice is yours and the Mom always knows what's best for her baby).

I battled with UC which was severe with deep ulcers with natural supplements, "mild" medications and so on for almost two years. I did take Mesalamine (Asacol) and all the suppositories you can imagine including hydrocortisone but that did nothing for me. I consider those the "mild" ones. Then last year in August I was rushed to the ER via ambulance and stayed for 15 days. I had developed pancolitis (when your whole intestine is inflamed) and was between life and death for 3 days. I got on Remicade (brutal biologic) which helped 50% but I am a former CFS/ME sufferer and Remicade obliterates your immune system so I am having some CFS symptoms again. Also, after going from 5mg/kg to 10mg/kg I got much worse on Remicade and had to swap to Entyvio. I'm still in bad shape but meanwhile my girl is two years old and I love her to the moon. Giving birth and being a Mom with UC is brutal but on a positive note it does make you stronger and I am grateful for every day that I am alive.

If there are any other questions that come up, please send a note. I don't think there is anything as TMI when it comes to sharing experiences about UC. There are some days when I'm really desperate but then I look at my little one and everything just falls into place.

This road you're on won't be one of medical issues only. It's a very emotional journey and my advice to you is to always try to see the things you have as opposed to the things you don't have or are missing out because of the condition. I have to tell myself that every. single. day.

I do hope that you will never develop a full flare but now that I and a lot of people on this site are here for you if you need us!

This is the first time I ever post something on a forum but I wanted to add a little note of gratitude for everyone at HealingWell. I can't recount how many hours I spent here reading advice from other UC sufferers and it helped me a lot!

Sending you all a lot of love and well wishes!

Ipoop, it is definitely a suppository medication only, so i think it must be anusol… although i’m sure she said it was mesalamine based not steroid?? She said it was an anti inflammatory. I’m sorry i don’t know whats what haha

Hi kloz31!

I must confess I do cringe when I have to answer the question about the medications but only because I don’t have a positive answer (at this point – it can always change!).
In short, no, nothing helped. I used to have CFS/ME which is believed to be an immune system disorder (UC might be too). The first line of treatment for UC in the US is Prednisone, which I took when my daughter was 6 months old. It almost killed me (I don’t say this lightly). In my case I started hemorrhaging after a week on it, I lost 40% of muscle mass in my legs (I keep track, I work out) and my left knee tripled in size. My skin was grey and I couldn’t walk. I looked like a zombie, literally. I was hospitalized, they did the colonoscopy again and saw that my UC and ulcers had gotten much worse. Then these 5 “brilliant” doctors from Columbia got together and came up with an even more “brilliant” idea to my problem: let’s double her Prednisone, it must not be enough! That’s when I knew I had to run. Their only other option was a biologic but I did not want to go down that route. It’s an immune suppressant and it’s dangerous for anyone let alone someone that had CFS. To make a long story short, I left the hospital, went home, ditched the Prednisone cold turkey (I do not suggest anyone do that as the withdrawal is brutal but I was hemorrhaging too much). I was able to stop the bleeding within 4 days with Chinese herbs and got much better by using supplements. I would say that my “flare up”, you know 20 bowel movements a day, sometimes blood and yes pain lasted for over 2 years. I did everything you can think of, different diets, supplements, acupuncture, functional medicine with IVs full of vitamins and trace elements, fecal matter transplant and so on. Sometimes I had better days but overall, I was pretty sick.
I think that it was the breastfeeding that got me through it. It was my bonding moments with my daughter and I felt I had a purpose even if I felt disabled. Then 18 months into this I got really sick. I had SIBO (small intestine bacterial overgrowth), was able to get rid of it with supplements (I found a clinical trial that compared that vs antibiotics and the supplements fared better and actually worked for my SIBO!). But later I developed a fever and one night started bleeding again, a lot. Not hemorrhoids but ulcers…Long story short: ambulance picked me up, I was admitted and had a C-reactive protein of 154. The Lab guy told he had never seen that before. It means your inflammation levels are off the charts. I had pancolitis at that point. I stayed 15 days in the hospital. They suggested to take out my colon but I refused it (in the US they like to cut things out). I was in severe pain. On a side note I am a very tough cookie when it comes to pain (I used to have a very low threshold to pain in the past), but I had Fibromyalgia for years and learned how to take insane amounts of pain before I cave in.
They were giving me intravenous morphine (after trying lighter stuff) but it wasn’t really working. They spaced it to every 4 hours and I was “high” for 30 min and after 2 hours in pain again. Thank goodness, I apparently don’t have a chemical propensity for addiction. In fact, I hated the morphine. Then my husband and I put our heads together and asked for a pain specialist. We knew there must be an issue with the CNS (central nervous system) that is making everything worse (my history of Fibromyalgia, I had trembling and shaking among other symptoms). Once the pain specialist came in he confirmed what we suspected and said there was better medication for pain. I am sharing this with you so you can archive it and should you have severe pain issues you can come back to this and remember to keep an open mind. It’s not always “only” the UC and NO ONE knows your body better than you do. So, they put me on Dilaudid (Hydromorphine), super strong, can be addictive, is dangerous but it worked for me. And he gave me Gabapentin. Now, Gabapentin has the potential to send you to hell and back. Very dangerous medication. I would only take in an absolute emergency. That was my case. I was between life and death for 3 days and I guess at one point they were taking the “let’s make her comfortable” approach…
At the same time, I was put on Remicade for the UC. At that point I was having diarrhea for 40 days already and Remicade was able to help with that by reducing the inflammation. I was having 40-45 bowel movements in 24 hours. No, I didn’t really sleep. The nurse was super nice and gave me a portable potty next to my bed so I didn’t have to walk to the bathroom – I wouldn’t make it in time anyway. My bms got down to 20x a day and my fewer finally went down. I had fewer for three weeks total. I would say that I started feeling better after the 4th and 5th Remicade infusion. That’s after about 3 months or so. Then my GI doubled the Remicade because I still had 30cm with deep ulcers but it backfired. I got worse  Now I have swapped to Entyvio (another biologic) and am hoping this will work. So far, not so good. I am having more pain again and I feel the inflammation is getting worse but am not sure. My GI is talking surgery but I would like to at least give stem cells a try before that.
I no longer take Dilaudid, I stopped on my own as soon as I left the hospital and decided to manage the pain in other ways (as long as it’s manageable). I am also weaning of the Gabapentin (that is a whole other story in itself – I am happy to expand if anyone has questions on this very dangerous medication).
This is really where I stand now. I am happy I no longer have Fibromyalgia or CFS but I am battling UC. In regard to breastfeeding I stopped as soon as I got on Remicade because my daughter was already 18 months old, but it was very emotional for me and I miss it very much.

I really don’t think you will have the sort of issues I did. My case is extreme. There are a lot of people here that have way more manageable symptoms of UC but I thought I share my story so that it might give you or someone else a new idea or perspective.
Personally, I think that the way this disease is researched and many other autoimmune diseases is misguided. All efforts are focused on suppressing, blocking and disabling our immune systems instead of researching how to work with it. Medicine knows very little about our immune system. Generally, try to stay away from things that will cause inflammation: pesticides like Glyphosate and so on, even if it’s hard as they are everywhere including in our water sources… UC might be related to an overall accumulation of toxicity in our bodies and things that rewire our immune system but for me to go into that would be a book ;)
I am happy to hear that you have a good partner. So do I. My husband is a life saver (literally) and very supportive. Exercise gratitude, inform yourself as much as you can, which you are doing here anyway and then make the best decision with the information you have available and have a clear conscience you gave your best. Life is about playing well (and having fun!) with the cards you are dealt.

Sending you love!

Ipoop, you legend, thank you once again… i feel like thats all i have ever said to you haha. But it’s honestly appreciated greatly xx

Healed mommy, please don’t ever cringe, it must be so very frustrating to have tried many options and not got where you want to be.. i can only empathise, and wish you well, and hope that something just clicks medically for you. You sound so very brave. Maybe you should write a book ;) !! I want to say that your daughter is a very lucky young lady to have such a strong role model in her life. You sound like you have a lot of happy things to make the bad times worth it (i hope thats true in any case)
Thank you for your story, i’m aware everyones is very different, but to me any information, good or bad, is power for me to start this road correctly. So i’m grateful.

Wishing you you well, and love is sent back xx

Not been pregnant, but I suggest full coverage of mesalamine with enemas and oral. This will hopefully get your flare under control and set you up with continued treatment once after the baby is born.

Suppositories arent enough....I'm cringing. But if this is all that's prescribed, make sure you can contact your doctor for further treatment.

q

Sounds fine to me. A suppository will well-treat the last 5cms. Oral mesalamines won't reach the last 5-cms at all. What oral mesalamines are good for, in your situation, is preventative of your UC spreading further in extent and involving more of your large intestine. It's a good insurance policy but hardly necessary for such a limited proctitis case at this time.