New Ulcerative Colitis diagnosis and struggling

Hey Everyone,

I have been hopping on this site a lot lately to find information and this is my first time posting. I have been trying so hard to be positive but I am reaching a breaking point. I thought it was time to post on here myself for some advice and support. I'm sorry in advance for this is probably going to be a long post, but I appreciate so much anyone who is willing to read and respond.

I was recently diagnosed with UC while admitted to the hospital. 2 months before I was admitted, things literally changed overnight for me. One day things were normal, and the next day all I saw in the toilet was bloody diarrhea. This progressed to me having abdominal pain as well every time I went to the bathroom, and eventually not being able to eat anything without being in very bad abdominal pain and needing to go to the bathroom every couple of hours. Shortly after that, I found out I was pregnant so I took myself to the ER.

I was admitted. My inflammatory markers were sky high and a flexible sigmoid showed them that I definitely had UC. They said there is a possibility that I have pancolitis but because I am pregnant, they didn't want to do a full colonoscopy until after I have my baby as it requires sedation.

From there, the plan was to start me on IV steroids for a few days, let the inflammation go down, transition me to oral steroids with a slow taper, and then try to maintain me on mesalamine (sp?). I saw some improvements while in the hospital while getting the IV steroids. My BMs were less frequent, but they were still bloody and loose. In any case, I was able to tolerate solid foods again and after a week they sent me home with a prescription of prednisone. Long story short, I rebounded very badly without the IV steroids and was readmitted the next day.

So, back on the IV steroids and because I was high risk (pregnant) and they really needed to get me healthy, they decided that remicade was the next option. My Drs assured me that they have pregnant women on remicade when they need it and there aren't any studies showing adverse effects of this drug on baby. They even said that they encourage new moms to breast feed still while they are on remicade (that was a HUGE thing for me). Starting any drug while pregnant is scary and I literally think about it all the time, but if mommy isn't healthy, baby isn't healthy and I just want to be healthy more than anything.

My first remicade infusion was double the usual dose, 10mg per kg instead of 5mg per kg. After that infusion, I seriously thought it was a miracle drug. I started eating solid foods again (very carefully) and I literally didn't have a BM for over a day. When I did go, it wasn't bloody, and it was semi solid.

So discharged again (and still being tapered off oral steroids). My first night home was miserable again. In the bathroom all night, horrible cramping, diarrhea, blood. I called my Dr and he just told me to go back to clear liquids for the day, increase my oral steroid dose for the day and take it easy. I actually started to feel a bit better during the day. He called me later on to check up on me too. He told me not to freak out if that stuff happens. My colon is still healing and food passing through it will irritate it and slough off healing ulcers and scabs and stuff.

I have now been home since the 18th and every day is such a struggle. I don't know what to eat and not eat. I swear, for every single food out there, there is a group of people who can eat it and a group of people who can't eat it. So I never know what is safe and I feel like I eventually end up paying for it when I eat anything at all. In general, nights are a very bad time for me. I get very very crampy, have to use the bathroom frequently and will have at least one or 2 BMs that are completely bloody and watery. Yesterday I thought I was having a good day. I was feeling up to eating so for the whole day I had 1/4 of an avocado with an egg, a few pieces of honeydew melon and then a few bites of cooked mushrooms, yellow squash and stewed tomatoes (without the skins). All day i seriously felt great. I was feeling super positive and actually laughing about things. Then nighttime came and it was miserable. I was cramped up all night long and my first few BMs of the night were semi solid and without blood (which was encouraging), but then my last couple were watery and bloody again.

I decided to go back on clears today, and my mom made me some bone broth with the chicken feet and all that I am going to eat, as I will try ANYTHING and I read that it "heals and seals" the colon. I am just so at my wits end here.

I'm sorry this is so long. I just need encouragement or advice or to just know I am not alone. I am on the verge of tears all day long and I am just so scared for my baby and me. I have lost 22 pounds since this all happened and I just want to be well for my baby more than anything and enjoy this pregnancy. I will accept any kind of advice, whether its about food or anti-anxiety tips, anything. By the way, my next remicade infusion is scheduled for January 30th.

Thank you for reading,

Lauren

Lauren, {{{{HUGS}}}}. What a way to start a pregnancy.

What is your current steroid dose? It isn't clear to me if you are still trying to taper. How many weeks pregnant are you? Are you still using the mesalamine enemas? This might be a good idea to kind of attack the inflammation from every possible angle.

Many women find that pregnancy makes their symptoms worse, but I want to console you that there are a lot of remicade babies out there and that while you are feeling awful now you won't be pregnant forever. If you want to chat with someone who's got a 6 month old after a very difficult pregnancy with active Crohn's (on remicade, and including hyperemesis gravidum ugh), go over to the Crohn's forum and read posts from scifigal. She's got a great attitude and is a hero in my book.

LaurieD, I hope you are keeping in close touch with your OB/Gyn and I would suggest you consider a high-risk OB practice at this point. I think using pred in the first trimester is enough of a concern (much more than the remi) that you will want to track fetal growth really closely.

My inflammatory bowel disease began with the lochia after the birth of my first child. Pregnancy is a big event for your body and I think you're probably right about how your bowel disease started.

Talk to your GI today about getting mesalamine enemas. They are safe and effective and may enable you to get of the pred faster.

Hi Laurie.

I've never used Remicade, but I thought that the standard was to give multiple "loading doses" close together when it's first started. It sounds as if you just received a single dose. I might ask your doc about this -- it might have something to do with you being pregnant.

Best of luck with everything.

Wow, what an amazing story. I never thought about getting the disease while pregnant, I'm so sorry you had to experience that.

As for what causes UC, I'm not sure. Mine is clearly hereditary, almost every male has had it. I'd love to know more though.

soystud said...
splendid name cool man !

Thank you, I'm not very good at picking names. After my first post I was afraid that it might have been insensitive to some that carry the disease. I hope that never becomes the case.

many of us here thrive on insensitivity - we talk about poop and blood and pants filled with poop and blood -

try calling one of us normal - now that would be insensitive

Food is rough! When I first was flaring I couldn't eat anything. Basically until I stopped bleeding (about 5 months into my flare) i couldnt eat anything. Down 30 lbs and counting!

But low residue is typically safe. White bread, mashed potatoes, bananas (I cant eat them still, but tolerate them well in a smoothie) and white rice. I honestly wouldnt try to eat any fruits or veggies for a while. I end up eating a lot of chicken breast, some fish, Hormel's natural lunch meats (and bacon!!) and that has helped a lot. I was a vegetarian forever, so it's been weird to eat meat... but seriously my body prefers it right now. I miss veggies :(

I agree with the Go Relax mantra. I personally lay down whenever I need, take naps often, and generally don't "push" myself at all.
I have found that chilling out and resting has helped me the most. Heating pads, ice packs, relaxing music... all very helpful to keep the brain calm... and I'm sure Baby will appreciate it too! :D

Congratulations on your pregnancy. Sorry that it brought on this UC flare. Drink lots of water and give yourself permission to not be Wonder Woman and you should be feeling better soon hopefully!!

(also, I agree with the "id be more worried about prednisone than remi" comment. Prednisone is a crazt drug. Is it helping with your symptoms? Or do you think only the IV steroids did?

Lauren, what about making protein shakes for yourself? The food you mentioned seems super healthy, but I know eggs bother some people while they are in a flare...like me for example. Also, tomatoes will send me straight to the bathroom as well. I think it's because they are a nightshade. Also, I was highly fructose intolerant while I was flaring so fruit was rough for me as well. The chicken broth your mom made sounds promising. You should also check out people posts about eating resistant starches. Seems lots of people have had success with that. I don't know a lot about it, but it's potatoes (preferably cold like potato salad maybe), cold pasta, green bananas....some people buy potato starch which you could easily throw into a shake.

In terms of anti-anxiety tips, you should focus on finding some humor. Watch funny movies or read a comedian's book. I remember when I was in a terrible flare I read a thread on here where people posted funny stories about their worst moments like urgency hitting in public places where there was no toilet paper so they had to wipe with their own socks. We have some funny posters on here. Those stories made me feel better. Do something every day for yourself that you enjoy. Don't let UC takeover. Sorting out what you can eat will take time so be patient.

Good quality whey protein is what I used in mine. I was going to suggest going gluten-free. There's lots of gluten-free pasta out there plus rice, corn, and gluten free oats. However, don't know if those have resistant starch or not...probably not. SCD diet will tell you to avoid potatoes, but I personally have no issues with them.

Hi LaurieD. I am so sorry to read what you've gone through. I had my first babies almost two years ago (twins!) and although my pregnancy and delivery went pretty much perfectly otherwise, my colitis was a ***** the entire time. Nothing compared to what you've been through, but D, C, urgency, you name it.

My advice has probably been given before. But Remicade has been a godsend to me. Also, Imuran. Asacol is poison for me. Regarding food and supplements: nothing has really helped me ever, besides staying away from fatty and high fiber foods. But as anyone with UC will tell you, we're all different.

A word of caution: After my c-section, I was given high doses of painkillers. This caused an extreme episode of violent blood loss two weeks after I gave birth, and compromised my breastfeeding abilities. BE CAREFUL WHAT PAIN MEDS THEY GIVE YOU.

Also: Your baby is lucky to have you for a mom. Try to look forward to the good parts :)

I agree with London Lurker RE "sports drinks". Most Gatorade contains artificial colors = chemical dye. You + baby would be better off having real fruit juice, even if you "cut" it with water at the start. It's o.k. to have small nutritious meals several times a day instead of 3 major meals when one is flaring. Have you tried plain boiled white rice or (hot) cream of rice cereal? You could also try some Stage 3 baby food if you don't want to puree items on your own. It helped me during severe left-sided flares. BTW, it's not unusual to feel worse at night. Most of us go thru that for a while during major flares. / Old Hat (33 yrs with left-sided UC; presently in remission taking brandname Colazal)