Hello I am 15 years old. I was diagnosed with Crohns about a year ago and I have only been in remission for 1 month maximum. I've tried Lialda, 6-Mp, enemas, formula diets, prednisone, and now Remicade. I thought the Remicade was working but I am having bloody stools again. I really don't want to go on prednisone again because it made me depressed and people at school made me upset by commenting on my moon face. What usually comes after Remicade? And what advice can you give me, please? Thank you all.
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What's after Remicade?
- Thread starter Merinach
- Start date
Don't give up on remicade yet! How long have you been on it? I got sick while on remicade with diarrhea too and after scopes and a lot of tests, we found out it wasn't my crohns at all and that I just had some aggressive virus. Know that once you stop remicade, your chances of it working again go down drastically.
Hope you feel better soon
Hope you feel better soon
Welcome to the forum Merinach.
My daughter was on Remicade for 13 treatments with very little remission. However, if we could go back, I would of had Imuran with it. we were told it helps. I would give it a good go before you decide to stop it too.
Our daughter is 15 as well and is currently seeing a naturalpath. It was a huge decision for us to slowly take her off of all of the immunosuppresants, but they were not working for her. She is now bringing up her immune system and it has been rough. The symptoms are the very same as with Remicade, so I cant say they are worse now. However, I do not know what is happening on the inside until her next colonoscopy.
Yesterday was probably one of the very few good days she has had
.
I would highly recommend a very qualified naturalpath when the time is right for you. There may be a day we turn to more immunosuppresants like Humira, but for now we are giving this 100 percent. .... I hope to someday write on here that she is cured!!!
You will find lots of good info on this site and wonderful support. I hope you find the right combination of meds that work for you so you are in remission.
take care and keep us updated on your progress. It is very true that intestinal flu's worsen symptoms...
please feel free to ask me any questions if I can help
My daughter was on Remicade for 13 treatments with very little remission. However, if we could go back, I would of had Imuran with it. we were told it helps. I would give it a good go before you decide to stop it too.
Our daughter is 15 as well and is currently seeing a naturalpath. It was a huge decision for us to slowly take her off of all of the immunosuppresants, but they were not working for her. She is now bringing up her immune system and it has been rough. The symptoms are the very same as with Remicade, so I cant say they are worse now. However, I do not know what is happening on the inside until her next colonoscopy.
Yesterday was probably one of the very few good days she has had
. I would highly recommend a very qualified naturalpath when the time is right for you. There may be a day we turn to more immunosuppresants like Humira, but for now we are giving this 100 percent. .... I hope to someday write on here that she is cured!!!
You will find lots of good info on this site and wonderful support. I hope you find the right combination of meds that work for you so you are in remission.
take care and keep us updated on your progress. It is very true that intestinal flu's worsen symptoms...
please feel free to ask me any questions if I can help
If anti-tnf don't work for you I'd recommend trying anti-map therapy. There's a a few threads on here regarding it
There are a lot if kids having luck with stelera since it's not a tnf blocker but works another way. That may be an option.
Or you may need something added to the remicade to boost it ( methotrexate or 6-mp).
My son had to switch to humira ( allergic to remicade after 8months).
The first year is the hardest.
Good luck
Or you may need something added to the remicade to boost it ( methotrexate or 6-mp).
My son had to switch to humira ( allergic to remicade after 8months).
The first year is the hardest.
Good luck
Dear Merinach,
I'm very sorry to hear the Remicade is not working for you!
I was diagnosed in 2001. I tried all kinds of medications with no help, until I was treated with Remicade. It was a life saver for about 4 years. However it did take several treatments before I noticed 75%difference. I personally did not have good results with methotexate, this would be a personal decision after discussing with your Dr.
In 2005, I was in/out of hospital for a year, was told I needed a colostomy bag or I would die. It was by far the scariest time of my life!
Then I found a NEW gastroenterologist who found an alternative treatment to a colostomy bag..TPN for several months which calmed my bowels fantastically.
Then I was introduced to HUMIRA - for me it is a GOD SENT! (knock on wood) I have been in remission for 8 years with occasional breakthroughs - due to my diet. I have recently changed my diet due to a few symptoms and things have calmed down.
I know what you are going through - it can be very scary. I'm new to this forum, but have already received great comfort in the posts I have read. One thing I know about Remicade is -once you stop it....you can NOT restart it again because it doesn't work again.
My recommendation is give it a chance...at least 6 months. Make sure you are 100% confident/comfortable with your doctor. It took me 10 different doctors before I found one that would take the time to listen to ME and educate me thoroughly about every step of every procedure/medicine change. Most of my colon is gone due my 2005 outbreak....and still no issues. Every day science is advancing and helping with this disease.
Also remember, DIET and STRESS agitate this disease. So try to relax, have a good dr, and find LEGITAMATE websites - like this one that can help/support you. We all have different experiences, but it is not as scary as it seems if you do everything right.
Good Luck sweetie...please keep us up to date about your progress! HUMIRA - MIGht be an option for you - discuss it with your doctor!
I'm very sorry to hear the Remicade is not working for you!
I was diagnosed in 2001. I tried all kinds of medications with no help, until I was treated with Remicade. It was a life saver for about 4 years. However it did take several treatments before I noticed 75%difference. I personally did not have good results with methotexate, this would be a personal decision after discussing with your Dr.
In 2005, I was in/out of hospital for a year, was told I needed a colostomy bag or I would die. It was by far the scariest time of my life!
Then I found a NEW gastroenterologist who found an alternative treatment to a colostomy bag..TPN for several months which calmed my bowels fantastically.
Then I was introduced to HUMIRA - for me it is a GOD SENT! (knock on wood) I have been in remission for 8 years with occasional breakthroughs - due to my diet. I have recently changed my diet due to a few symptoms and things have calmed down.
I know what you are going through - it can be very scary. I'm new to this forum, but have already received great comfort in the posts I have read. One thing I know about Remicade is -once you stop it....you can NOT restart it again because it doesn't work again.
My recommendation is give it a chance...at least 6 months. Make sure you are 100% confident/comfortable with your doctor. It took me 10 different doctors before I found one that would take the time to listen to ME and educate me thoroughly about every step of every procedure/medicine change. Most of my colon is gone due my 2005 outbreak....and still no issues. Every day science is advancing and helping with this disease.
Also remember, DIET and STRESS agitate this disease. So try to relax, have a good dr, and find LEGITAMATE websites - like this one that can help/support you. We all have different experiences, but it is not as scary as it seems if you do everything right.
Good Luck sweetie...please keep us up to date about your progress! HUMIRA - MIGht be an option for you - discuss it with your doctor!
When I'm having a "flare up" like you are right now... stay away from (my favorites) raw vegetables and fruits. I get my nutrition from Green Smoothies. Might sound gross at 1st, but now I love them!
I never eat fried or greasy foods...I always regret it the next day, but I do treat myself to a homemade burger every now an then LOL Also, stay away from dairy products and nuts or seeds, corn and peas.
The beginning can be difficult, but I promise it will get better! When the medicine starts to work and you feel better, you can occasionally treat yourself to the "no-no's".
I recommend logging everything you eat/drink and any side effects you may have from them in a journal. Everyone's body reacts differently and you need to learn what you can and can not eat. Trust what your body is telling you and how YOU feel.
As you know with Crohn's we lose our intake of vitamins and nutrition. Do some research on Green smoothies and different recipes on line as well as pinterest.
I follow Megan Morris on pinterest..She has different recipes and nutrition advice. It won't let me post her link but you can google her, as well.
I'm really glad to hear the antibiotic is helping!!
Hang in there...your future will be bright soon!!
~Take Care~
Barbie
I never eat fried or greasy foods...I always regret it the next day, but I do treat myself to a homemade burger every now an then LOL Also, stay away from dairy products and nuts or seeds, corn and peas.
The beginning can be difficult, but I promise it will get better! When the medicine starts to work and you feel better, you can occasionally treat yourself to the "no-no's".
I recommend logging everything you eat/drink and any side effects you may have from them in a journal. Everyone's body reacts differently and you need to learn what you can and can not eat. Trust what your body is telling you and how YOU feel.
As you know with Crohn's we lose our intake of vitamins and nutrition. Do some research on Green smoothies and different recipes on line as well as pinterest.
I follow Megan Morris on pinterest..She has different recipes and nutrition advice. It won't let me post her link but you can google her, as well.
I'm really glad to hear the antibiotic is helping!!
Hang in there...your future will be bright soon!!
~Take Care~
Barbie
I totally disagree with pushing things on people (not my goal in any of these posts), however: I am currently on the SCD diet. I have been on it for 6 months. It healed:
1.) a fistula
2.) Inflammation
3.) My D - I usually go to the bathroom ONCE every 2 days now
4.) Most of my pain (although not all)
It is incredibly restrictive. You must cook 95% of your food. However, if you are extremely diligent, it will likely help. What's to lose?
1.) a fistula
2.) Inflammation
3.) My D - I usually go to the bathroom ONCE every 2 days now
4.) Most of my pain (although not all)
It is incredibly restrictive. You must cook 95% of your food. However, if you are extremely diligent, it will likely help. What's to lose?
I should note in the above that I had a CT Enterography recently. I refused to go on Humira against my Doctor's wishes - hilariously enough, that same doctor contacted me after the CTE to apologize for doubting me - exclaming that I, quote: "Had absolutely no symptoms or evidence of Crohn's and that if he had not done the scope himself, he would question his own diagnosis."
PM me if you want support. I can help.
PM me if you want support. I can help.
That's amazing the SCD diet worked for your fistula! I will DEFINITELY, remember that for the next time mine come back. Unfortunately, 9 years ago, when things were at there worst for me - they said I would die without a colostomy bag!
Back then I always second guessed everything my doctor's said because nothing was helping me. Needless to say, I went on TPN treatment & liquid diet for almost 9 months - to "calm things down & HOPEFULLY clear my 1st of many fistula's". At the time it was the right decision for me...9 years later no colostomy bag.
However, from time to time I do still get the fistula's and have had 3 surgeries - they said no more for me, so it is good to hear their are alternatives now a days than the drastic TPN treatment.
Even though Humira has been "my" savior, of course, next to the Lord - I know it is not for everyone! Although I have no side effects from it, now, I wonder what the future side effects could be or bring...especially at my doses.
I am slowly but surely introducing the natural holistic stuff into my body... My long term (not too long I hope) is to eventually get off of Humira completely and sooner -than later have my dosage reduced significantly.
Honestly, it is a scary thought, but it is about time to the right thing, since most of the pharmaceutical meds have been "poison" to my body. I mean the year I was on steroids - was detrimental to my body - forever! Difference is -everyone knows steroids are like that, since they have been around so long. Humira & Remicade all are still too new to really know the harm/good to a person's body.
Again, thank you for the info about the diet!
Back then I always second guessed everything my doctor's said because nothing was helping me. Needless to say, I went on TPN treatment & liquid diet for almost 9 months - to "calm things down & HOPEFULLY clear my 1st of many fistula's". At the time it was the right decision for me...9 years later no colostomy bag.
However, from time to time I do still get the fistula's and have had 3 surgeries - they said no more for me, so it is good to hear their are alternatives now a days than the drastic TPN treatment.
Even though Humira has been "my" savior, of course, next to the Lord - I know it is not for everyone! Although I have no side effects from it, now, I wonder what the future side effects could be or bring...especially at my doses.
I am slowly but surely introducing the natural holistic stuff into my body... My long term (not too long I hope) is to eventually get off of Humira completely and sooner -than later have my dosage reduced significantly.
Honestly, it is a scary thought, but it is about time to the right thing, since most of the pharmaceutical meds have been "poison" to my body. I mean the year I was on steroids - was detrimental to my body - forever! Difference is -everyone knows steroids are like that, since they have been around so long. Humira & Remicade all are still too new to really know the harm/good to a person's body.
Again, thank you for the info about the diet!
Haha I still haven't really seen an answer to the question, whats after remicade. In my mind, after the remicade/humara option is burned out, the next option is surgery. I however, was diagnosed in march of this year and really know nothing other than the fact that no medications are touching my UC. After reading all the responses in this section I have reluctantly decided to keep a food journal. (something I've been trying to avoid). Shouldn't be too hard though I cant eat much. Anyhow I wanted to respond to the comment about "I really don't want to go on prednisone again because it made me depressed and people at school made me upset by commenting on my moon face.". Just remember 99.9 % of the scrubs in high school mean nothing in the grand scheme, and healthy people are to naïve to fathom what we go through and what real life is like. My boss once commented on my forehead breaking out in pimples when on Pred. It was embarrassing. Do what you have to, to get better and don't care what they think.
To answer your question, apart from trials (SSI vaccine which is in my sig and looks to be extremely promising for sustained remission) there is anti-map therapy, you'd need to find a doctor willing to prescribe the treatment to you, but as far as remission rates, they're actually higher than anti-TNF so there's definitely other options there instead of surgery... It's important to listen to doctors but it's equally as important if not more in my opinion to follow your gut and always get a second or even third opinion. Especially with something as final as surgery. Bless you
Great advice Joshua!
Always, Always get a second and 3rd, even 4th opinion, if need be. Yes, there are still doctors that care, but a lot try to line their pockets by making money off of the medications they prescribe. Also do extensive internet research on EVRYTHING BEFORE agreeing to it.
I have been on TNF therapy with great success for so long I was not even aware of the SSI vaccine. Vaccines personally scare me, but I will be sure to get all the information, so I know all of my options. Success now, doesn't ensure adverse side effects from long term use - I mean HELLO these are foreign bodied in my system. I am always nervous my body will start rejecting and treating them as soon...and BAM way worse than before. RESEARCH RESEARCH RESEARCH! Trust you instincts, and get other doctor opinions....they all have different experiences, knowledge, and beliefs.
Always, Always get a second and 3rd, even 4th opinion, if need be. Yes, there are still doctors that care, but a lot try to line their pockets by making money off of the medications they prescribe. Also do extensive internet research on EVRYTHING BEFORE agreeing to it.
I have been on TNF therapy with great success for so long I was not even aware of the SSI vaccine. Vaccines personally scare me, but I will be sure to get all the information, so I know all of my options. Success now, doesn't ensure adverse side effects from long term use - I mean HELLO these are foreign bodied in my system. I am always nervous my body will start rejecting and treating them as soon...and BAM way worse than before. RESEARCH RESEARCH RESEARCH! Trust you instincts, and get other doctor opinions....they all have different experiences, knowledge, and beliefs.
"I really don't want to go on prednisone again because it made me depressed and people at school made me upset by commenting on my moon face.". Just remember 99.9 % of the scrubs in high school mean nothing in the grand scheme, and healthy people are to naïve to fathom what we go through and what real life is like. My boss once commented on my forehead breaking out in pimples when on Pred. It was embarrassing. Do what you have to, to get better and don't care what they think.[/QUOTE]
SOOO true!! This will be a distant memory soon and you will probablly never see those "ignorant" people after school. The people who care/love you, don't care about your side effects because they LOVE YOU for you! They people who say stuff, make fun or what ever negative comments - don't worry about them - they will be nobody's in life. Unfortunately, it takes some people to have a tragedy or illness "hit home" BEFORE they become "good-hearted" people. Keep you head high and positive, don't sweat the small stuff. I KNOW it SEEMS important in highschool - it does to everyone who has been there- I GUARANTEE it will get better. Surround yourself around positive people and shut the negative one's out...STAY strong!! God Bless!
SOOO true!! This will be a distant memory soon and you will probablly never see those "ignorant" people after school. The people who care/love you, don't care about your side effects because they LOVE YOU for you! They people who say stuff, make fun or what ever negative comments - don't worry about them - they will be nobody's in life. Unfortunately, it takes some people to have a tragedy or illness "hit home" BEFORE they become "good-hearted" people. Keep you head high and positive, don't sweat the small stuff. I KNOW it SEEMS important in highschool - it does to everyone who has been there- I GUARANTEE it will get better. Surround yourself around positive people and shut the negative one's out...STAY strong!! God Bless!