I've just have a blood test and stool sample and me inflammation level have gone from 700 to 1300. When I was first diagnosed in July 2014 the level was 2,000. I'm on imuran and 7.5mg of steroids. I was on 5mg, but my doctor increased it after my level rose.. Does this mean I'm closer to a operation? I'm only 15 and dread this one day. Searching the net it states 75% of people will require surgery at some point. I going back to the doctor in November for another check up. :sign0085:
Inflammation level
- Thread starter WarrenVex
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Look into different diets!!! Try it for a while (not just a week) and don't just half-ass it.. Really try to make it work with different foods. I wish so bad that I could go back to my younger years and try more things before I had surgery. Let me know how things go!
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My son is 19. He was dxed at 15 and had surgery at 17. His surgery went really well and he was back at work and school 9 days after the day of the surgery. That being said even though the statistical percentage of surgery is high CD is such an individual disease when it cimes to symptoms and issues that I would let it weigh to heavily on your mind that surgery is inevitable. The majority of kids on the forum under the parents section have not had to have surgery.
Pediatric CD is generally more aggressive and progressive than adult CD. Very few can maintain deep, stable remission that meets the standard of full mucosal healing with diet alone. Diet in conjunction with the appropriate dose and schedule of the right meds can help, if nothing more than maintaining a healthy lifestyle.
Since it seems you haven't tried biologics yet then your next step may be biologics. For many, these are great meds that help them to reach deep, stable remission and keep their CD at bay for quite some time.
Make sure you stay in contact with your GI about any new symptoms so that any meds changes or testing that need to be addressed can be done quickly
Pediatric CD is generally more aggressive and progressive than adult CD. Very few can maintain deep, stable remission that meets the standard of full mucosal healing with diet alone. Diet in conjunction with the appropriate dose and schedule of the right meds can help, if nothing more than maintaining a healthy lifestyle.
Since it seems you haven't tried biologics yet then your next step may be biologics. For many, these are great meds that help them to reach deep, stable remission and keep their CD at bay for quite some time.
Make sure you stay in contact with your GI about any new symptoms so that any meds changes or testing that need to be addressed can be done quickly
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Biologics are meds like remicade, humira, entyvio. A lot of GI, especially when dealing with CD that manifests in adolescents use the top down approach when medicating. You can look at the meds for CD like a pyramid. On the bottom are the 5ASAs like penta sa or asacol. They are for mild disease and most kids have moderate to severe disease. The next level of the pyramid are immunosuppressive meds such as imuran, 6mp, and methotrexate. The top level of the pyramid are meds like remicade, humira, entyvio etc. These are the strongest meds available for CD. They have the highest level of efficacy in studies. So a lot of kids are put on biologics straight away after being diagnosed.
My son has never seen results from diet. He isn't bothered by any certain foods so diet can be difficult for some.
The other meds like steroids (pred and entocort) are used to immediately dampen the inflammation and give the maintenance meds like Imuran or remicade time to build up in your system.
Another choice to dampen the inflammation while waiting for the maintenance med to kick in exclusive enteral nutrition which is where you take formula only in for a set number of weeks like 8 or 12. You can either drink the formulas, which can range from store bought like boost or ensure to prescription formulas like peptamin 1.5, or you can use a nasogastric tube to get the formulas.
There are a lot of meds out there and it can take some time to find the right one and then the right dose and schedule for each person so I wouldn't be concerned at this point about surgery. But you can make a list of symptoms, questions and concerns then go over them with your GI.
Also it can take maintenance meds some time to reach therapeutic levels. For instance, it can take Imuran 3 to 4 months, methotrexate 6 weeks, remicade 6-8 weeks after the loading doses.
My son has never seen results from diet. He isn't bothered by any certain foods so diet can be difficult for some.
The other meds like steroids (pred and entocort) are used to immediately dampen the inflammation and give the maintenance meds like Imuran or remicade time to build up in your system.
Another choice to dampen the inflammation while waiting for the maintenance med to kick in exclusive enteral nutrition which is where you take formula only in for a set number of weeks like 8 or 12. You can either drink the formulas, which can range from store bought like boost or ensure to prescription formulas like peptamin 1.5, or you can use a nasogastric tube to get the formulas.
There are a lot of meds out there and it can take some time to find the right one and then the right dose and schedule for each person so I wouldn't be concerned at this point about surgery. But you can make a list of symptoms, questions and concerns then go over them with your GI.
Also it can take maintenance meds some time to reach therapeutic levels. For instance, it can take Imuran 3 to 4 months, methotrexate 6 weeks, remicade 6-8 weeks after the loading doses.
Doctor say diet won't help and has nothing to do with it?
That is not correct. Many people myself ncluded have found help through diet.
Your doctor just wants to monopolize control and follow what's in his big pharma bag.
Most MDs won't get into diet and let patients pursue that on their own.
With this disease you need to take control of your life.
Eating healthy is important for everyone and if you have disease in your intestines it is counter intuitive to think diet has no role
Good luck to you.
That is not correct. Many people myself ncluded have found help through diet.
Your doctor just wants to monopolize control and follow what's in his big pharma bag.
Most MDs won't get into diet and let patients pursue that on their own.
With this disease you need to take control of your life.
Eating healthy is important for everyone and if you have disease in your intestines it is counter intuitive to think diet has no role
Good luck to you.
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Completely agree with Robrich, diet is important. I suggest getting back to basics. Start with liquids, broths, jellos, smoothies (without raw fruit, I suggest Kefir in dairy/yogurt section), ensure. Give your intestines a rest, then slowly start adding in bland items such as pasta, rice, unbreaded chicken breast, etc. Keep a log of what you eat and how you feel each day.
Make sure to take multi vitamins. Gummies work best for me. Good luck!
Make sure to take multi vitamins. Gummies work best for me. Good luck!
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Ok that's me my little penguin or aka mr chicken
Latest studies have shown the increase risk of bad things like lymphoma etc come from drugs like imuran and 6-mp .
Biologics have shown that they don't have these risks
The important thing to realize is the risk of anything bad is really low.
We do things everyday that have much higher risks
Riding in car is the highest risk for any child and especially young adults but we do it everyday since it improves are life even more.
Swimming another high risk activity for kids and young adults but again for most with the proper supervision not an issue .
Risk vs benefits .
The doctor makes recommendations for a med when the benefits outweigh the small risk .
My kiddo is 11. He was dx at age 7.
He has not had any surgery .
He has been on 6-mp but that wasn't enough.
He also tried remicade at age 8.
That worked really well for him .
He is now on humira and mtx .
I can say he went through 2nd through the beginning of6th grade now on these meds without getting sicker ( actually less sick ) than my other kiddo.
He swims competively goes to school etc...
No issues
He does drink supplemental nutrition ( peptamen jr ) in addition to food to help make sure he grows and gains like his classmates .
This has worked well and he is on the taller side and not skinny .
Diet alone is not enough to control crohns in kids ...adults sometimes but not kids.
We just add it to meds to make sure growth is not affected
I would ask your Gi with your parents what the risks are with remicade but more importantly what the benefits are.
Also what the docs sees happening if you change nothing and leave things as they are .
Good luck
Latest studies have shown the increase risk of bad things like lymphoma etc come from drugs like imuran and 6-mp .
Biologics have shown that they don't have these risks
The important thing to realize is the risk of anything bad is really low.
We do things everyday that have much higher risks
Riding in car is the highest risk for any child and especially young adults but we do it everyday since it improves are life even more.
Swimming another high risk activity for kids and young adults but again for most with the proper supervision not an issue .
Risk vs benefits .
The doctor makes recommendations for a med when the benefits outweigh the small risk .
My kiddo is 11. He was dx at age 7.
He has not had any surgery .
He has been on 6-mp but that wasn't enough.
He also tried remicade at age 8.
That worked really well for him .
He is now on humira and mtx .
I can say he went through 2nd through the beginning of6th grade now on these meds without getting sicker ( actually less sick ) than my other kiddo.
He swims competively goes to school etc...
No issues
He does drink supplemental nutrition ( peptamen jr ) in addition to food to help make sure he grows and gains like his classmates .
This has worked well and he is on the taller side and not skinny .
Diet alone is not enough to control crohns in kids ...adults sometimes but not kids.
We just add it to meds to make sure growth is not affected
I would ask your Gi with your parents what the risks are with remicade but more importantly what the benefits are.
Also what the docs sees happening if you change nothing and leave things as they are .
Good luck
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- 14,792
I think the point is a lot of things that seem scary can do a lot of good.
My kiddo was very sick before biologics ( remicade )
He couldn't swim or play
So the risk with any drug is scary but having a child who was too sick to play for months was far worse .
Remicade was like the energizer bunny batteries
Biologics let him keep going and going and going
So I have to tell him stop
Not to try to get him to get and go
My kiddo was very sick before biologics ( remicade )
He couldn't swim or play
So the risk with any drug is scary but having a child who was too sick to play for months was far worse .
Remicade was like the energizer bunny batteries
Biologics let him keep going and going and going
So I have to tell him stop
Not to try to get him to get and go
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- Mar 27, 2013
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- 994
Universally no one likes being on medication but crohns generally needs serious and sustained treatment to get it under control and for us to feel and get better.the risks of meds are overstated basically a cover your back exercise.the diet thing is always a bone of contention eat the things that help you and if think you have a trigger food avoid it good luck all the best
