Infliximab and Blood

[Luciana]

Hello Everyone. I am new to the forum, this is my first post,
and i need your advice :sign0085:

I recently started Infliximab / Remicade for the first time, because i could not taper down my Prednisone without flaring up. I have been on prednisone for half a year now. Thankfully the Infliximab / Remicade helped straight away!!
I had my 3rd infusion 2 weeks ago. So far so good.
But today i went to the bathroom and there was lots of bright blood in my stools. I have not had any blood for at least 2 months. And otherwise i am feeling fine. So of course i got a little worried?

1/ Is it because i am still tapering down my prednisone?
I am on 10mg now. Down from 40mg (the last few months i could not go lower than 17mg)

2/ Is it because i have been Juice Fasting for 7 days?

3/ Could it mean the infliximab / remicade is not working anymore?
my next dose is in 6 weeks.

Hope i am making sense!? :yfaint:

I hope there is some comforting advice out there in the Crohn's universe so i don't have to panic.

Thank You so much

Luciana

 

[Deleted member 431298]

Hello Luciana.
Thanks for sharing your story. I am sorry you are flaring while on Remicade, although it seems like you are trying different things (meds, diet).
Firstly, it sounds like a visit to your GI is in order. When you have blood in tour stools it should be treated by a doctor. I would not wait six weeks to see one, but ask for a consultation sooner. I would also ask to have blood / stool (calcprotectin) samples done to get an overview of the situation.

Having said that, my thoughts are that maybe the juicing is too hard on your digestive system. I know there are alot of proposals around for "cleaning the system" with juicing, but for us with CD I am not sure the general logic applies. People with inflamed guts are in a very different state than the average person.

The prevailing theory on CD is currently that we have an immune deficiency, which allows some (infectious) agent to attack us and compromise the gut wall. Then that happens, the gut wall no longer shields off the deeper layers from food and bacteria residue, and it becomes very easy to irritate the gut further. In fact, some researchers suggest the majority of symptoms we get stem not from the primary mechanism, but the secondary - certain food items entering places they should not.

There exist a few diets (low FODMAP, IBD-AID, SCD, GAPS - they overlap alot) that are taylored to patients with IBD. Maybe this one: the IBD-AID diet is worth a try instead of juicing? It is developed by researchers, and it has some scientific evidence of efficacy behind it. It is divided into stages, where stage one would be the one to follow for two-three weeks and see if things improve. Note that in stage one, all vegetables are cooked and pureed to be less hard on the system.

I hope you will feel better soon!

 

[ronroush7]

I could be wrong but with bright red blood it could be hemmrhoids. Ask your GI.

 

[Luciana]

Hello OleJ!
Thank you so much for your reply.

I will pay a visit to the doctors tomorrow and monitor the next few days how my stools are. I feel no other symptoms otherwise.
Before i started the Infliximab in November, i was flaring pretty bad and the whole colon had inflammation, which was not reduced by prednisone and i was in the hospital for a week. So i don't think i am a 100% recovered yet as i've only had 3 Infliximab infusions so far. And i heard it can still take a while?

And i started 2018 with a Juice fast cause the last few months i had gained 15 kg (33lb) From Prednisone and eating lots of white bread, potatoes white rise and oily fish because of my flare. When usually i eat very healthy. I have the type of crohn's that seems to increase my appetite? So i felt i needed a fresh start and a cleanse now that i am feeling so much better. And then afterwards go back to a healthy diet.

I've done Juice fasting before and it has always felt amazing. I drink a minimum of 2 litres of fresh Juice, 80% Green & 20% Fruit a day. And lots of teas and water. So i thought it wouldn't be a problem? But maybe it is too hard on the system right now, like you said? I will have to do some more research.

I don't have diarrhea at the moment. And i was kind surprised that i passed stools on the 7th day of no solid food?

I had a look at the diets you posted. The IBD-AID Diet! Thank you so much!
It's very similar to how i try to eat on my normal days. I just don't have Dairy or any meat apart from Fish. Otherwise it's the same. And I also take Probiotic supplements.

You think it's possible to just pass bloody stool for one day?
Without it being a real "flare up"

Thanks for your time OleJ

Kind Regards
Luciana

 

[Luciana]

Hello ronroush7!
Yes that's true. and it was bright. i've never had hemmorhoids, do they hurt??
I did have a stricture on my last colonoscopy in Novemember and Anal Fissure.
But in this time i had a lot of pain because of them!
Thanks for your input.

Kind Regrds Luciana

 

[Guerrero]

With a stricture you should avoid too much fiber, maybe the increase fiber intake with green juice irritate your bowel.

I agree with ronroush and Olej, be sure to tell your doctor about the blood and ask for advices regarding your diet, it can be dangerous to take too much initiatives with our disease. Also dont worry too much, the infliximab will make more time to fully kick in and heal your bowel, so a bleeding may happen even if you started it a few weeks ago. The situation should improve after some months.

 

[Luciana]

With a stricture you should avoid too much fiber, maybe the increase fiber intake with green juice irritate your bowel.

Hello Guerrero!
Do you think that when I juice and it's completely smooth without any bits it's still too much fiber? I even filter it 2 times to make sure i get no bits however small in there?

I agree with ronroush and Olej, be sure to tell your doctor about the blood and ask for advices regarding your diet, it can be dangerous to take too much initiatives with our disease. Also dont worry too much, the infliximab will make more time to fully kick in and heal your bowel, so a bleeding may happen even if you started it a few weeks ago. The situation should improve after some months.

Thank you so much for your reply. Yes i will try not to worry too much.
I know that usually the doctors are not very big fans of the Juicing. They think most Crohn's patiens lose to much weight, so juicing is the last thing i should do. But with me that's not the case. And when i was gonna do my last infliximab they wanted to give me a higher dose because i had gained weight. And this scared me a bit so i promised i would lose weight.

Luciana

 

[Deleted member 431298]

Hello OleJ!
Thank you so much for your reply.

And i started 2018 with a Juice fast cause the last few months i had gained 15 kg (33lb) From Prednisone and eating lots of white bread, potatoes white rise and oily fish because of my flare. When usually i eat very healthy. I have the type of crohn's that seems to increase my appetite? So i felt i needed a fresh start and a cleanse now that i am feeling so much better. And then afterwards go back to a healthy diet.

I've done Juice fasting before and it has always felt amazing. I drink a minimum of 2 litres of fresh Juice, 80% Green & 20% Fruit a day. And lots of teas and water. So i thought it wouldn't be a problem? But maybe it is too hard on the system right now, like you said? I will have to do some more research.

It is hard to tell.. I think you are right in just trying out some things and see what works, that seems to be the approach that works for many. (Myself included). A diet based on starchy grain and vegetables though seems to aggravate symptoms for many (myself also included).
I hope the symptoms you are experiencing are "just" a hemorrhoid or something else that is benign, and not a CD manifestation.
best, Ole

 

[ronroush7]

Hello ronroush7!
Yes that's true. and it was bright. i've never had hemmorhoids, do they hurt??
I did have a stricture on my last colonoscopy in Novemember and Anal Fissure.
But in this time i had a lot of pain because of them!
Thanks for your input.

Kind Regrds Luciana

Sorry for the delay in responding. I mostly remember my hemorrhoids itching

 

[Layla]

Hi Luciana, Sorry you had to join us!

I'm also no doctor but bright red blood sounds like the fissure is bleeding to me. I have those and they occasionally bleed. When they do I, and my Gastro, don't worry about it at all. But please do have it checked so you know for sure what the cause is.

With regards to you gaining weight, I would say that is due to the prednison not the CD. The first time I was on pred I gained 20 kg's (after losing 10 due to illness) so you're certainly not alone with that!
Once you stop he pred the weight loss will be easier. And hopefully you won't have to resort to a juice fast, I certainly wouldn't risk doing that, in my case it would definitely have an adverse effect.

The other thing that struck me as I was reading your post is that you may have to rethink what healthy eating means for you. For non-IBD people a lot of fibre is good, for most of us, not good at all! The same goes for other "healthy" things. It all depends on what your body can digest comfortably and it will take some time to figure out what that is for you. Sadly it's not one size fits all so you'll have to experiment. The diet options mentioned above would be a good place to start but don't be discouraged if they contain foods that don't work for you.

I have to rely on supplements to try to avoid malnutrition because most healthy foods just increase the malabsorbtion and therefore makes things worse. But I'm still hoping I'll be in remission one day and I could eat a salad without repercussions,I love salads!

Good luck with it all