I started Remicade in December 2017 and recently had my 3rd loading dose.
Finally! I’m seeing some results. My usual diarrhea is a normal stool on the Bristol Myers chart!
This morning I was looking into the toilet and smiling like a lunatic!
This is very joyous for me since I was in emergency not even a week ago, they discovered some cyst that I now have to follow up with my PCP. I went to hospital in a 9 day flare, having to leave work, the doctor told me I likely have kidney stones! Both my husband and I just looked at each other knowing that is not even close to what is wrong! My husband insists I go to a ‘real’ hospital next time. In the end the doctor changed his thought and told me that “it’s either your Crohns or the cyst we found right in the spot where you said the pain was, but my guess it that it’s your Crohns” so we got a non-answer cause they don’t know.
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Hobbits
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I'm so glad to hear your Remicade is working - I've just started it and am due my second dose next week - I really hope it works for me. My main issue is not diarrhoea (I have always gone too often during the day but it's not too runny - sorry if that's TMI !!) but pain and blood so I hope it'll be effective for me too. Keep me updated as you go along......I'm right behind you in the process!!
Great news about the remicade 👏😁 not so good about the possible cyst but it’s nothing you can’t overcome!! You’re a really strong girl and you always get there in the end😁it’s made my day that your feeling a bit better😁 I’m going to work shortly!!! I’m full of cold with a sore throat and just had a nose bleed 😬 hey ho I’m just pulling up my big girl pants and and going to get on my way. Have a good day, crazy isn’t it who would have thought your own poo could actually make you smile 😂😂 lots of love to you xx
Thanks for the encouraging words Angep! Indeed the Remicade seems to finally be working! Hoping for continued improvement over time, with continued treatment. My watery stools are gone!!!’🤗, so I know the Remicade is working on my inflammation levels. Can’t even express how grateful I am for that little thing alone, as the toilet doesn’t rule my personal or professional life anymore!☺️Stricture is now a dull pain and not acute like it was and no visible blood at all. GI is running a stool test to see if there is blood I can’t see, but I’m pretty good at noticing things like that. GI wants to do a repeat MRI in 6 months to confirm progress. If all goes well then I won’t require any surgury and will continue on Remicade. Finally a light 💡 at the end of the tunnel....keeping my fingers crossed 🤞
I’m continuing on my special diet and because my GI knows this, she introduced me to another doctor at the hospital wants me for a study on how diet can affect IBD and your microbiome, it’s a five year long study, with 800 IBD patients and 800 healthy patients. I jumped at this since I’m a firm believer that diet and microbiome have a causal relationship with IBD. Some doctors now believe IBD is not an autoimmune disease like they once thought but related to gut dysbiosis and bacteria - So this study is very interesting to me. I believe this is the route to find a cause and cure but I know not likely in my lifetime
Going to see PCP on Friday about the cyst. From what I’m told most are benign and they just leave them there. It’s only a problem because hospital doctor is not certain if it’s the cyst or Crohns that is causing pain and due to the location it could be either. My PCP knows basically nothing about Crohns unfortunately but I’m hoping she can help sort this out. Otherwise it will likely be referred back to my GI, who won’t help if it’s my ovary, she only deals in GI issues. Which means she will refer me back to my PCP who may have to refer my to a Gyno. lol. Seriously crazy!
Have I mentioned I don’t even like doctors ( bless their hearts for all they do) they are a rather frustrating lot! Hoping one day to not need one...ungh not likely in this life
Well you just never know!!! Maybe it will be in your life time!! 😁how amazing would that be? IBD is so common now it’s crazy!!! I believe also diet and the microbiome is an important part of getting to the bottom of this illness pardon the pun!!! 😂one day some amazing person out there will be able to fit all the pieces together and eureka the cure will be found 👏👏👏 there are some fantastic doctors out there along with the scarily incompetent!!! Just like in all walks of life there is good and bad. Just keep on getting better 😁xx
I’m doing ok 😁 just got a cold and sore throat so hope it didn’t progress!! I had a surprising gift from the cbd oil!!! It’s really helped with my fatigue and stamina!!! I’m sure you can imagine what a difference that makes👏👏 I actually make it through my shift at work without feeling like I’m dieing by the end of it!! I need to get a tooth removed to be honest as it’s so very loose and all inflamed around it. Once my cold has gone I will sort that out. I just wish it would fall out to be honest and have done!!! Until I get it out I won’t know properly because it’s aggravating the situation!! I’ve nothing negative to say about the cbd oil and if it only ever helps me with my fatigue then I’m happy with that. After all we need a decent quality of life don’t we 😁 I’m gradually upping the dose. I started on 1 drop 3x daily and now do 2 drops 3x daily under my tongue. Once I get the tooth out I will up the dose then maybe. I tried vitamins/diet to get as well as I can and throwing the cbd oil into the mix appears to have been the tipping point. I know you and I are like so many others out there we keep looking and learning for ways to help ourselves and hopefully others along the way too. 🤗
Yay! So glad you are getting great results! This is awesome and glad you found what helps.
The dental is not fun, yes🤞 if it could just fall out on its own!
Keep well ☺️
Do you mind my asking how long it was before the Remicade cleared up your blood? I've only had my first infusion so I know it's early days but I have what I consider quite a lot of blood (maybe the gastro consultant not too worried?) :- in stool, on wiping, in toilet bowl and I even pass blood when I only go for a wee, just desperate for this to clear up soon xxx
Hi! I know it’s very concerning when there is a lot of blood.
I just had my third infusion on Feb 02nd and they day right after that the Remicade kicked in. I had been in a major flare since Jan 23. Basically the day after third infusion my flare just stopped, no blood, no diarreah, my stricture pain was still present but instead of acutely painful, it lessened to a dull ache, and now the pain is for the most part the pain is so low grade, most of the time I can’t feel it. Each day seems to get better and better. My stools are normal and although most may now care, it’s huge for me since I have lived with Diarraha for over 10 years, even before being diagnosed with Crohns, the bathroom ruled my life for so long.
I know some get instant relief after the first infusion, others take longer. I know also for some (I think about 40%) that it does not work for, but if not then there are lots of different biologics to try. We are all so different , and what works for one doesn’t always work for the others and some people develop antibodies against the drug, and need to stop taking it
Your very early in your treatment so please keep the hope! I know this drug needs to build up in your system. My GI is doing a blood test at my next infusion, which is the fourth infusion maintainace dose. The blood test will tell how much Remicade is in my system, and they can judge the dosage or infusion cycle if needed.
I’m starting maintenance every 8 weeks ( however my next is actually 7 weeks) it’s all they had for appointments. If I need more in my system I can go every six weeks instead of 8 or they can increase dose some too.
I hope this helps, I’m still learning myself.
Got prayers for you that your Infusions kick in and your bleeding will stop soon. 🌸
Thank you so much, I really hope so too - had a horrible day today and I was actually incontinent of blood for the first time whilst out walking my dog - I have my next infusion on the 13th xx
Thank you. My 16 yo has had 2 infusions and we still have blood, several bms a day and at night, though this is a huge progress, we still have a ways to go. Her next infusion should be in a couple weeks. Hoping the 3rd one is the charm.
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