Community Forum

 Reply posted for ryleys gammy.

Ryles Gammy,

Just read your response to "feel like know one knows" and was very curious as to the homeopathic stuff.  I have had colitis for 19 years.  I just turned 50 last year and my youngest will be starting college in the fall.  I have learned to deal with my disease pretty well, I think.  Lately though I have had some flare ups and have been considering alternatives like acupuncture or homeopathic remedies.  I currently take colozal and that is it.  I do take lots of supplements like acidophilous, marshmallow, fish oil, and just started taking calcium-D plus. 

Would love to hear from you!  My e-mail is terrip@mrgc.com.

 Reply posted for stayceladybug.

Just curious about the Aflac. How did you get it and how expensive is it? A friend of ours said I would never be able to get anyhing like Aflac with my condition....

 Reply posted for sapper21.

Hi.  I know how you feel with the surprise job concern.  I was diagnosed with Crohn's last July when I was in the hospital for 17 with an abscess that had to be drained.  I ran out of PTO with my work and since I hadn't been there for a year yet, the company let me go while I was still in the hospital!  I went down to the HR department for PA down in center city Philly.  I was told that to prove discrimination I had to either prove that someone in the company said, "Oh we don't want Jen working here, she has Crohn's" or prove that someone else was allowed to take more time off than what they had available but were not fired."  I was very disappointed in that route because how the heck would I be able to access the info to prove that?!  I wasn't medically cleared to work from Aug. 07- Oct. 07.  I'm a workaholic so it was very difficult for me to spend that much time off of work just so I could get myself better. Anyway, it turned out for the best since I'm with a great company now where I use a laptop for work. They're very flexible with my Remicade appointments (especially when my doctor changed me from once every 8 weeks to once every 6 weeks three months after I started.)  Plus I get to take my laptop to my Remicade appointment and still get work done so I don't have to take a sick day. 

I find that red tomato sauce doesn't sit right with me sometimes.  I also have a low tolerance for lactose during a flare.  I was at a birthday party this weekend and splurged with a can of Dr. Pepper for the first time in a year.  It reminded me quickly of the stomach cramps I used to feel all the time but just coped with before I knew I had Crohn's.  I think I'll wait a while to try caffeine soda again. 

Take care,
Jen

 Reply posted for kimhg.

 Reply posted for jennifer1220.

 hi jenn,

sorry to welcome u to this horrible disease. i have managed to survive 30+ yrs of it by the grace of God.

the best advice i can give u is read, read, read.( and pray, pray, pray if you are so inclined). google all your meds and get as much info as u can. same thing goes for diet. u were warned about a lot of the standard offenders. meat and dairy in general can cause problems as well. ( i have both UC & Crohns) and i just finished eating a burger.

what our bodies can tolerate is different for all of us and u just kinda have to play detective. keeping a journal helps at least until u really get a grip on your disease. after a while u get good at figuring out what u can eat and when u can eat it. sometimes that will vary based on when u "went" last, if u have to be somewhere in public, and what mood your belly is in at a given time.

make sure u are taking supplements. sublingual Bs, multi w/iron, fish oil if u can tolerate it. while u are actively bleeding especially. of course u want to talk to your doc first but sometimes u just have to use your own judgement and not blindly assume they know what is best for u. i am going the homeopathic route (in addition to my asacol) much to the dismay of my primary doc. it's working for me but only u can decide what u really need.

i wish you all the best.

gammy

 Reply posted for jennifer1220.

 Reply posted for FemaleN2Iron2.

 Reply posted for sapper21.

My husband was diagnosed with UC in 1996 and since then has endured multiple flares, many medication changes and is finally on Remicade IV infusion every 7 weeks.  During all that time there have never been any dietary restrictions, other than those he imposes upon himself because he knows they cause him trouble.  Red meat has never been an issue nor has dairy.  He suffers more from pulpy fruits, fruits with skin, and nuts.  His motto has become "everything in moderation"- too much of anything can cause him problems.  During a flare he tends to stick to soft foods and things that are easy to digest just to give his colon a break.  Good luck - and know that there is hope for a fairly normal life.

 Reply posted for sapper21.

I dont have UC but I do have Crohns and I know that the diets and nutrition are pretty much the same for both diseases. Well I am also wondering if you were told to stay away from red meat.  My dr has always told me to only watch my diet when I am in a flare.  He says that diet does not bring on a flare but will irritate one.  I know that rare meats are not good at any time because they are harder to digest and you will probably find that there are certain foods that you will not be able to tolerate as well at any time whether in a flare or not.  I know for me that when I am in a flare that I become lactose intolerant and have to put myself on a soft food diet but when I am not in flare that I can pretty much eat anything.  I think it is mostly trial and error when you are not flaring. I also know how difficult it can be on your family.  I have 2 boys 12 and 4 and one daughter 17 months and it just sucks that I cant do the things I really want to do with them because I just feel sick most of the time so having a mate that can pick up the slack is really important.  You might want to check into using the Entocort also instead of prednisone.  I hate prednisone and with Entocort you dont get the side effects that you do with prednisone.  Very little of it actually gets into the bloodstream so no moon face and you dont get the food cravings like you do with prednisone and so much easier to come off of also.  If there is anything else that I can help with or if you just need to vent feel free too......it is important to be able to have others to chat with that actually understand what you are going through....... sweetcheeks0105@yahoo.com .  Good Luck! 

 Reply posted for FemaleN2Iron2.

Hi, well I know for me that I have had to change meds several times.  They either stop working or well they end up working the opposite for me.  I think it is different for everyone though.  I have been on just about everything out there and now I am on Humira and it is sorta working but not as well as it should.  Hopefully yours will continue to work for you though. 

 Reply posted for sapper21.

Sorry to hear about your ordeal.  Suprised about the read meat, i have crohns and everyone is different as far as what does and does not cause a flare.  i cant have any pork.  there are alot of good books for diet ideas and cook books.  also i would look into a supplimental insurance like aflac, i recently got it to help cover money lost to lossing work if i end up back in the hospital or simply out of work for a few days due to this fun disease.  i hope your meds even out soon for you.

 Reply posted for jennifer1220.

Hi all!  I'm recently diaginosed with UC. And after a grueling 4 weeks of toilet horror, I have now become normal.  I am on 20mg predinose an 1.2 mg of Lialda, and after a week of those, I dropped the mesalamine enemas ( thank Gosh) and I am only experiencing mild bloating and well, the toots....I still eat the same healthy diet I have for 12 years, and the only thing that aggrivates me in the morning, usually is my 1 cup of coffee. But it's very mild irritation.  I truly believe that the Lialda has been my life saver.......for now, maybe The family man of 6 ( sorry forgot your screen name) can try this?  I haven't bled and have had 1-2 movements daily for a week - 10 days......

I had asked a few questions on here of y'all, but never got any replies... I was wondering if my meds will always help, or will I get used to them and they will stop working?  And what time frame is considered REMISSION?

Thanks and I hope EVERYONE gets to feeling better soon........Tina

 Reply posted for sapper21.

did your doctor tell you no red meat? I know fast food will kill your gut but no one said to avoid red meat to me. I was told to avoid alcohol, high fiber foods, caffeine & spicy foods.

I am 32 yrs old also, diagnosed in April with UC. I am a SAHM of 3 children. Been taking Asacol, 9 pills a day and been on Prednisone for a month. Still bleeding, passing mucus & pus. My dr wants to try Remicade before having to do something permanant. It's scary how much these medical tests and treatments are. I don't know how I'm even going to pay the balances I have now yet alone pay for the Remicade.