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Coltoncc

Coltoncc

Hello everyone,
My name is Colton and I'm from California, currently attending CSULB in Long Beach. I was diagnosed with Crohn's in spring of '07 after a Perianal abscess surgery failed to heal correctly. It was turning into a fistula so I began seeing a surgeon who referred me to a gastro guy that did the whole upper/lower gi stuff and saw enough inflammation that made him believe it was Crohn's (the biopsy made it more clear). I began Remicade immediately and began feeling pretty great within a few years and finally gained some healthy weight.
When coming to school in southern ca, I began infusions at UCLA and started seeing a doc there. I have been doing so well with strict diet for so long now that I wanted to see if I could potentially start moving away from doing infusion treatments as it would be much more convenient and I could live like I don't even have the disease. Yesterday I had a colonoscopy for the first time since 2007 and the doctor said I was looking like the average person without any inflammation! He wants to talk next week about changing my medication possibly to just a pill! I'm very excited about this possibility and I thought it would be great to get more insight on this forum as far what everyone has found to work with diet, exercise, and lifestyle. I look forward to learning from you all!
Also, I'm a musician and spend the majority of my time on the internet on guitar forums so forgive me if my CD forum etiquette is off :)
 
Last edited:
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Hello Colton and welcome to the forum :)

I am so pleased to hear that things are going well with the tum! What pill wold it be that you might be started on? There is plenty of helpful info here from others who have done well with diet and alternative routes so do have a good look around.

Wishing you continued success.

AB
xx
 
Hobbes650

Hobbes650

Coltoncc said:
Hello everyone,
My name is Colton and I'm from California, currently attending CSULB in Long Beach. I was diagnosed with Crohn's in spring of '07 after a Perianal abscess surgery failed to heal correctly. It was turning into a fistula so I began seeing a surgeon who referred me to a gastro guy that did the whole upper/lower gi stuff and saw enough inflammation that made him believe it was Crohn's (the biopsy made it more clear). I began Remicade immediately and began feeling pretty great within a few years and finally gained some healthy weight.
When coming to school in southern ca, I began infusions at UCLA and started seeing a doc there who has now referred me to the IBD research clinic where am I now seeing Dr.Hommes. I have been doing so well with strict diet for so long now that I wanted to see if I could potentially start moving away from doing infusion treatments as it would be much more convenient and I could live like I don't even have the disease. Yesterday I had a colonoscopy for the first time since 2007 and the doctor said I was looking like the average person without any inflammation! He wants to talk next week about changing my medication possibly to just a pill! I'm very excited about this possibility and I thought it would be great to get more insight on this forum as far what everyone has found to work with diet, exercise, and lifestyle. I look forward to learning from you all!
Also, I'm a musician and spend the majority of my time on the internet on guitar forums so forgive me if my CD forum etiquette is off :)
Click to expand...

No worries about the guitar playing. At least you have short hair- its the longhairs that always cause the problems (musicians get that joke). ;)

Glad to see you have been improving! you will most likely be taking some kind of medicine the rest of your life now. My doctor and I are still contemplating which meds that will be- I get scoped again after I finish my Prednisone taper in Feb so we'll have more to talk about then. At the very least, for me it will be Pentasa, probably Azathioprine (until it no longer works I guess) and possibly a biologic. The biologics are considered more aggressive, but the current trend is to use them earlier in treatment instead of waiting until you very sick. That's the issue my doctor and I will be discussing after I'm done with Pred, and I'll be sure to update what we decide in this forum.
 
Scaryman

Scaryman

Wishing you further success. But keep in mind if you change meds keep an open mind about reverting if you get complications from a flare.
 
Kip1

Kip1

H Colton welcome to the forum. I am so glad that things are going well for you. Has the doc discussed which pill he wants to put you on?
I do hope everything continues to go well for you. Keep us updated with your progress on your new meds.
 
acheallova

acheallova

Welcome colton,
Its great o hear how well you're doing. I do hope the med changes stay effective and u can continue to move forward in ur life symptom free. Enjoy the forum. We are here for you. Questions, venting, medications or just to chat. Best of luck with the change over! - hugs-
 
Coltoncc

Coltoncc

Thanks so much for the warm welcome! I will be talking to the dr next week about what the next steps in medication will be and I will update here when I do. It'd be great to get any input you guys might have on whatever medication he decides to put me on. Thanks again everyone!
 
Coltoncc

Coltoncc

So I just talked to the Doc and it looks like I'm starting 6MP. I've already begun researching it on the internet and starting getting through all the great info on the forum. Sounds like there can be a few bad side effects but the doctor wants to monitor my blood pretty regularly to make sure I'm reacting to it ok. Also I'm starting on a low dose at 50mg. Any major concerns or thoughts I should know? Thanks everyone!
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
I have been on this med for 7 months now and have not had any issues so far, there are a lot of bloods to be done initially which can be a pain to arrange but I now have them done monthly which is a bit easier. Just keep an eye out for any general feeling of being unwell or run down and let your doc/nurse know. They also like to know if you have a cold/cough that lasts longer than the normal few days so they can check your bloods and make sure you haven't got an infection. Also I don't know if you get them over there but here it is recommended to have flu jabs at this time of year and being on this med I automatically get them for free.
 
M

mnsun

Any elaboration on your "strict diet" would be most appreciated. Like, maybe, must haves and must avoids or general guidelines on food philosophy. It would be nice if we could categorize us fellow crohnies into diet subtypes if it could ever be so easy.
 
Coltoncc

Coltoncc

Angrybird,
Thanks so much for the insight and I'll be sure to keep up with how I'm feeling as I move forward. I did get my flu shot already but it seems there's one going around here in CA that people who got their shots are still picking up, bummer :( I'll be sure to keep the hands washed a lot! I've got to do blood tests every two weeks for awhile once I get started but still beats infusions!

mnsun,
I should probably revise the word "strict" for fear of coming off as a privileged turd as I respect the fact that many people here have had to work much harder at it that I have. But I avoid:beef,beans, corn, carrots, fried foods, heavy fats, and anything remotely spicy. I'm still working to figure it all out everyday but those are the for sures!

CLynn,
Thanks! There definitely is a lot of info and support to be found!
 
Hobbes650

Hobbes650

Angrybird said:
I have been on this med for 7 months now and have not had any issues so far, there are a lot of bloods to be done initially which can be a pain to arrange but I now have them done monthly which is a bit easier. Just keep an eye out for any general feeling of being unwell or run down and let your doc/nurse know. They also like to know if you have a cold/cough that lasts longer than the normal few days so they can check your bloods and make sure you haven't got an infection. Also I don't know if you get them over there but here it is recommended to have flu jabs at this time of year and being on this med I automatically get them for free.
Click to expand...

Yes, any kind of cold/cough should get at least a doctor's call if lasting more than a few days. Prednisone makes it really hard to catch a cold to begin with so if you do catch one, keep an eye on it. The last time I had a flu shot was many years ago. My workplace was offering them for free so I got one. Sick for a whole week afterwards, but no fever. I'd rather get the flu and be sick for 2-3 days and be done with it. My doctor tells me he's not concerned if I don't get one while on Pred, since I hope be off it in Feb anyways. It's up to you- if you normally get one then you have no reason to change anything.
 
Hobbes650

Hobbes650

Coltoncc said:
Angrybird,
Thanks so much for the insight and I'll be sure to keep up with how I'm feeling as I move forward. I did get my flu shot already but it seems there's one going around here in CA that people who got their shots are still picking up, bummer :( I'll be sure to keep the hands washed a lot! I've got to do blood tests every two weeks for awhile once I get started but still beats infusions!

mnsun,
I should probably revise the word "strict" for fear of coming off as a privileged turd as I respect the fact that many people here have had to work much harder at it that I have. But I avoid:beef,beans, corn, carrots, fried foods, heavy fats, and anything remotely spicy. I'm still working to figure it all out everyday but those are the for sures!

CLynn,
Thanks! There definitely is a lot of info and support to be found!
Click to expand...
Hi Colctoncc, Sounds like you're on the right track! Are you keeping track in a journal? Given what you're already sensitive too, you may want to be careful with carbonated drinks, especially heavy or dark beer. Sorry. :frown:

Another good use for the journal is to keep track of your bathroom habbits. Your doctor I'm sure is aksing about that, and usually poop isn't something that's memorable.
 
acheallova

acheallova

Another good thing for the journal is daily temperatures, bm's ( color, consistency, frequency, blood,mucus etc..), aches and pains ( locations) and anything odd or out of ordinary. Muah- hugs-
 
Coltoncc

Coltoncc

I haven't been keeping track like that but that's definitely a great idea! I hadn't thought about carbonated drinks being an issue so I'll have to keep an eye out on that one! I don't drink alcohol so the dark beers aren't an issue. Thanks everyone!
 
acheallova

acheallova

Oh yes, carbonation is a terror- dehydrating and depletes essential electrolytes. It is one to look out for. I've heard juicing is a great option, yet to try it myself, also gatorade is good at replenishment. Sometimes an occasional ensure/boost thrown in there doesn't hurt either. Muah- hugs-
 
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