Infliximab crohn disease
Hello,
I’m 24 years old and having crohn disease now for 4 years. The doctor gave me a entocort, i used it for a few months because i stopped it by myself and i saw that the pain and all the things that comming by ( often to toilet, blood in my poop etc.) was the same as when i used that.
I told the doctor that i was stopped using it and he told me okay. But now after 2 years the pain is comming back again and i feel its worse that before.
After some test in the hospital they saw that i have an inflammation of 12cm scattered in my both intestines.
He told me to get a new medicine what calls infliximab.
Do some was have some experiance with that medicine?
Because its against your natural defense system ( i dont know if you could get it better ) . Why im not happy with that cuz it makes you tired, you cannot stand too long in sun etc.
They say when you stop with it the inflammation can come back.
And i prefer and stand for things that natural made to heal things. Like fasting, or healthy lifestyle ( train and eat healthy )
I looking forward to your response
I hear you. It is always intimidating to see what these medicines can do long term etc. Natural is always a great option but sometimes it isn't enough. I do think however, it is worth trying natural things to see if your body responds but if you see after some time that things aren't improving, I would add on medicine. This was my personal experience at least.
In the meantime, how is your diet looking? Also are you taking anything to help lower inflammation? CBD oil is great for that for example. Also turmeric in high doses. If you want help in the natural realm, I would suggest searching for a Naturopathic Medical Doctor in your are and exploring that route.
I hope this helps some.
Best, Elizabeth (team member)thanks for your reaction.
I didnt use cbd oil i will do my research to look what is good for and how biologic it is. I know it only of people that use it against cancer.
About my diet: since i have this inflammation till now im still figure it out what i can eat and not. In the beginning was my experiance that sometimes healthy food can hurt and fastfood was matching better ( mcdonalds or chocolate bars ). So im still trying things out but now im focussing on healthy lifestyl trying to drink only water en eat more vegetable and do fitness and kickboxing.
Do you know a good doctor or adviser that can help me with a second opinion? Cuz my doctor want me to do infliximab and i dont. Or i hope someone responds who had already experienced it.
I also had an very ugly inflammation above my ankle. Its was burning and hurting alot they said maybe it has an connection with my crohn.
What area do you live in? Also, you can go here to search for a Crohn's specialist: https://www.crohnscolitisfoundation.org/find-a-medical-expert I hope this helps some. And I am so sorry you have that inflammation on your leg. It looks so painful! I hope it heals soon and you get relief. Hugs, Elizabeth (team member)
Hi
, I think has some great suggestions about the natural route if that is what you prefer to do. I wanted to share my experience with Infliximab, since you mentioned you'd be thinking about that medication. For me, Infliximab put me into a far better spot than I had been with the worst flare of my life. That hasn't been true of everyone I have talked to (as with all meds, Infliximab works well for some and not so well for others), but I haven't had side effects except for sleepiness/headache day of. I'm careful around others who may be sick, but I've been out in the sun (using proper sunscreen) and been able to get back to a more active lifestyle. Getting an infusion every 8 weeks hasn't been a huge burden on my life, and in fact, is easier than taking pills every day. The way I see it, Infliximab helps to bring down the TNF in my defense system that shouldn't be there. That's why the inflammation is happening. So it's a flaw in my defense system that the drug is helping normalize so I can go back to my life. That being said, I totally understand it's not for everyone! I just wanted to share my experience. Hope that helps some. -Eshani (IBD Team Member) Hi Eshani,
How long did it take for you to see an improvement? I have had 2 Infliximab infusions in 3 weeks and haven't noticed much change. Some people I've spoken to say they started feeling better within a week or two. Am I just being paranoid and impatient or is it something I should talk to my IBD team about.Hi
, it sounds like you're in what they call the loading doses, which is getting the medication into your system. Personally, I really started to see a difference after 2 months. That was also around when I had my colonoscopy and the doctor saw significantly reduced inflammation (but not all the way). I am now 5 months in and I feel quite good (able to eat tons of things, 1-2 solid stools a day, very little urgency), but we feel there might a little room for improvement. Because of that, I'm having all my inflammation levels rechecked and we are considering moving to 6 week treatments instead of 8 weeks. My thought is that it is okay that you aren't seeing really evident improvement just yet--I haven't at 3 weeks--but I also think it's a good idea to reach out to your IBD team to chat with them since you have some concerns. They are there to answer these kinds of questions, and it might be good to know when their personal timeline is for you to see an improvement. I've heard that some doctors wait 6 months to see, because they say some patients take that long. Others do not wait as long (this was my doctor with Humira, but I think he was willing to wait longer with the Remicade/Infliximab). Keep us updated on what they say! -Eshani (IBD Team Member)
Hi
,
I spoke to my IBD nurse yesterday and she seemed concerned that I was still quiet symptomatic. They double dosed my last Infliximab infusion to try and speed things along. She is going to ask my GI if he wants to bring my 3rd infusion forward, she thinks 4 weeks may be too long.
My 2 biggest symptoms are the amount of times I go to the toilet each day with maximum effort to pass anything (10+, sometimes with blood) and the lack of sleep during the night. I wake up 3-4 times a night to go to the toilet, spending 30-45 minutes sitting on the toilet.
She said that my GI is looking at putting me on another drug, can't remember the name (so many to try and remember and they never have easy names) but it starts with a M. This means I'll be on 3 immunosuppressents at once which sounds pretty hectic.
She also sent me for more blood tests (my usual bloods are done weekly) and also a stool sample to rule out infection.Hi
, I'm so glad you checked in with the IBD nurse. I'm glad they're being proactive, though I can understand feeling nervous about the 3 immunosuppressants. Are they putting you on methotrexate, by any chance? I haven't been on that, but I know it can be a common addition to biologics. Do you feel happy with your IBD nurse's response? <3 -Eshani (IBD Team Member)
