Just started Remicade

Ya I have had that when nothing gets absorbed.
What is your albumin and protein?
You are likely not going to process a lot of the remicade right now if it is low, becuse it is a protein bound med.
it happened to me and I needed a double dose a week after my first dose.
Are you feeling any better since starting the remicade
You might want to try a pured diet for a little. It might or might not help. Also make sure to eat rally slowly and chew your food.

High fiber isn't good when flaring as fiber is undigestible ruffage that's bulking and abrasive (bad for raw, inflamed and bleeding tissue). I'd stick with broths, soups, chicken, potatoes, some rice, all bland and unseasoned. Smaller and more frequent meals and snacks are easier than big.

The remicade is more likely to help than hurt you. I'd bet your flare is worsening and therefore another infusion is advisable.

Remicade should show a positive response during the loading doses, if you're going to get a response. That's about a 6 week wait to get through the loading doses. I had my first positive response a week after my second infusion, a much bigger improvement a week after the third infusion, and slow and steady improvements thereafter until I reached remission. I'm now in a deep remission, 1.5 years and counting with 1 non-urgent bm a day. Prior to remicade, I was steroid dependent at 20mgs of pred, having multiple accidents per month and 8 months into a horrible flare up. I hope remicade works as well for you, as it did for me. Hang in there for a few more weeks.

I literally can't wait to start remicade- hopefully next week. My insurance has approved and my bloodwork is a god- just waiting on the hospital to call to schedule. My first accident in a while today and feel like poo!!! Pun intended. Ever have those days you feel like you wanna just throw in the towel? Not literally of course- just feel like I'm falling apart.

I hope you both find quick relief with remicade.

When we're flaring for multiple months, our quality of life is nil and we're depressed and pessimistic about a way out of that misery. A new treatment plan can at least give you hope, an important thing to have at that point. Try and stay positive as it does get better. Many of us have been there and know the extreme low and high feelings all too well... Uc sucks.

Post Edited (iPoop) : 6/30/2016 5:44:10 AM (GMT-6)

Hello all, just a quick update. Ive had my second infusion some weeks ago however the problem im now having is 'food'! So i managed to work my way up to having roast chicken and some oven baked veg, i had it again the next day and had really bad diarrhea. So for 2 days i hardly ate anything, ive now had to start again going from toast with jam, mash and scrambled egg (these seem to be my safe foods) Im so scared to try anything as it may give me an upset stomach, im just wondering if this is normal or is it just me. Probably should mention that through the diarrhea i had some bleeding now that seems to have stopped.
Im just so fed up having to wait at least 2 hours in the morning even before i have breakfast and then not wanting to go out and if i do i dont eat anything. I called my IBD nurse and told her about the foods and some things i cant tolerate at all and she said 'oh im not sure why, food shouldn't effect the infliximab' which just makes me feel like i have no confidence in their support!
Im now scared to try anything new in case i get diarrhea and have to start all over again with the bland food!

The best thing you can do is treat the underlying inflammation. Remicade likely needs longer to heal you. In the meantime, steroid enemas or mesalamine enemas (e.g. Rowasa) are helpful to treat down-low inflammation that's truly the bane of our existence and most of our troubles. Rectal inflammation causes urgency, frequent bms, the feeling of always having to poop, etc.

Mornings are always the most difficult for us, most can relate about having multiple bms in short order and anxiety about leaving the house due to urgency. It's a good idea to wake up extra, extra early and try your best to empty out fully before going about your day. They make a device called a squatty-potty, a little foot rest that helps you better empty out. How you sit on the toilet impacts your ability to empty fully. I don't have the actually squatty potty, but just elevate my feet the same (a kids stool, a pile of books, etc works just as well). It helps.

For some, the act of eating or drinking caffeine can cause us to have to poop shorty afterwards. Skipping eating can help but it certainly sucks. You don't want to do it unless necessary. I'll usually only do that when I have an early am plane flight. Eat bland, low fiber, and well cooked foods.

Some do have food intolerances even after reaching remission. Dairy intolerance and gluten intolerance are the most common, but there can be many culprits that are individual. It's a little hard to identify what exactly is bothering you when flaring, because really everything bothers you! As you heal, make a food diary and record what you ate and your next day symptoms to look for correlations. Sometimes you can find matches, but it's hard and takes a lot of trial and error. Nobody can tell you your diet solution but you.

Shal75 said...
Hello all, just a quick update. Ive had my second infusion some weeks ago however the problem im now having is 'food'! So i managed to work my way up to having roast chicken and some oven baked veg, i had it again the next day and had really bad diarrhea. So for 2 days i hardly ate anything, ive now had to start again going from toast with jam, mash and scrambled egg (these seem to be my safe foods) Im so scared to try anything as it may give me an upset stomach, im just wondering if this is normal or is it just me. Probably should mention that through the diarrhea i had some bleeding now that seems to have stopped.
Im just so fed up having to wait at least 2 hours in the morning even before i have breakfast and then not wanting to go out and if i do i dont eat anything. I called my IBD nurse and told her about the foods and some things i cant tolerate at all and she said 'oh im not sure why, food shouldn't effect the infliximab' which just makes me feel like i have no confidence in their support!
Im now scared to try anything new in case i get diarrhea and have to start all over again with the bland food!

you should have another stool test to rule out pathogens.
how many BMs are you having a day?
It is normal for people with active colitis to not tolerate food. your doctor might suggest you try only liquid diet for a few days and slowly work up to thicker liquids, soft foods, until you can eat normally. I found roast chicken was irritating becuase it was not so soft. salmon was the first real protien I ate but the high fat might cause increased Diarrhea. even if the veggies are baked you might want to avoid them for the time being.
can you get a test to see what your protien/albumin/crp etc? these might indicate if you are more likely to be dumping the remicade in your stool (becuase it is a protein bound med) excesive inflammation will also likely indicate if you might need a higher dose.
I would advise (if you are not already on it) to start some immunomodulator like imuran- it can make the biologic more effective and prevent your body from creating antibodies agains the remicade.

while food does not cause inflammation it can worsen symptoms and your colon is in tough shape, so when food is getting there it is irritating the very inflamed/ulcerated mucosa (have you ever tried eating with a canker sore in your mouth? similar but in your guts)

So I've seen the IBD nurse and as I'm still bleeding she has put me on Budesonide (Cortiment 9mg) for 4 weeks to see if this will help, I've also got a endoscopy booked in so they can see if it is UC or Crohns!

Shal75 said...
the problem im now having is 'food'!

I recommend trying homemade bone broth chicken soup. Do not buy chicken broth from the store. It's not the same.

To make homemade bone broth chicken soup:

Get or have someone buy (if you are too weak to shop) a package of chicken meat with bones that are free of anti-biotics.
Put the chicken in a large pot of filtered water.
Add chopped green onions (just the green part of the green onions, the white part is high in fodmaps)
Add a tablespoon of apple cider vinegar.
Add 1/2 teaspoon of salt.
Bring the soup to a boil. Then turn the heat on to the lowest setting and cook for 24 hours. The minerals and vitamins from the bones will go into the soup and help strengthen the body.
You can add some cut-up carrots at about 20 hours.
Just drink the soup if you can't tolerate any food. Then try the chicken. Then the cooked carrots. If you can tolerate the chicken and cooked carrots, then try adding some rice noodles. And if you can tolerate that, then next time make the bone broth soup with two cans of coconut milk, about a cup or two of water, and 1 tablespoon of curry powder. You can also add some black pepper. Make sure to get coconut milk that contains only coconut milk extract and water. Some cans of coconut milk contain gums, which are not good for the digestive system.
And if you can tolerate all that, then add some other veggies to the soup with the carrots. I usually add Chinese cabbage or Bok Choy.
If you can't wait a full 24 hours, that's okay. I will usually start drinking the soup after about six to eight hours. There is so much soup that by the time I've eaten it all, it's been cooked for more than 24 hours. I usually put the soup in the refrigerator at night.