I just found out 5 days ago.... i have a few Q's

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J-
Regular Member


Date Joined Jun 2009
Total Posts : 86
   Posted 6/21/2009 8:55 PM (GMT -7)   
ok, im J

for the last 3 months i have bin having a flair and taking no meds for it. why? because i diddnt know i had crohns until a few days ago. i am 23, manage a health food store, thought it was a parasite, and put off the colonoscopy. nono

i feel like death most of the time, the pain is wicked (but you know that). i have lost 30-35 lbs (im at just under 100 now), the cysts in my mouth make it hard to eat.

my Q's:

1. what can i do to help gain weight? protein drinks?
2. i understand that were all different but is there any "safe" foods during flairs?
3. i am starting asacol (3 morn / 3 night) also he gave me a script for a immune suppressant $790 co-pay! is it normal to start off on a immune suppressant?
4. mouth cysts, any advice to help?

sorry if there are answers out there for this,
J

J-
Regular Member


Date Joined Jun 2009
Total Posts : 86
   Posted 6/21/2009 8:56 PM (GMT -7)   
also,

thank you!!!

its all so new to me.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 6/21/2009 9:22 PM (GMT -7)   
Hi J. Sorry but I have to be brief right now.

1) Control the disease, but try liquid drinks like boost, ensure, milkshakes if you can handle lactose.
2) Most stick with mashed potato, lean meats, white bread.
3) Yes, normal.
4) Not sure sorry.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 8mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 6/21/2009 9:34 PM (GMT -7)   
I would suggest looking into the Specific Carbohydrate Diet and a good cellulose based probiotic. You should be able to find that at the store you work at.
Pharmacist as of 6/12/2009.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 6/22/2009 12:39 AM (GMT -7)   
Hi there, sorry to hear of your diagnosis, but don't tick yourself off too much for putting off the colonoscopy at least you have a diagnosis now and will hopefully soon be on your way to recovery!
 
When I'm flaring I live off of meal replacement drinks, I use complan which can be made with milk or water obviously milks better for extra calories if you can tolerate it! Also plain sandwiches (white no salad etc) never seem to give me trouble or just a slice of bread with spread on it but I have no trouble with gluten so really its down to what you can handle, my dietician once told me if you can mash it with a spoon then it shouldn't be too hard on your digestion (I don't think she meant to actually mash it but if it was soft enough to be able to mash it should be alright!!)
You don't mention any steroids so I'd say it was probably right that you were put on an immunosuppressant, thats the route usually taken before they consider the more hardcore drugs, if you can get it under control without steroids or biologics than that should put you in a great position for the future.
As for mouth cysts, I didn't have cysts but when I was first diagnosed I had a lot of very nasty mouth ulcers and was prescribed (but it can be bought OTC) Corsodyl mouthwash (chlorhexidine gluconate) it made all food taste like marmalade for a while but it really worked on those ulcers!!
 
 


Wolfie40
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Date Joined Dec 2008
Total Posts : 947
   Posted 6/22/2009 4:09 AM (GMT -7)   
Soft foods, easy to chew , easy to swallow.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 6/22/2009 5:52 AM (GMT -7)   
Hi J, and welcome! You might want to search the forum for previous discussions on the SCD (Specific Carbohydrate Diet, book: "Breaking the Vicious Cycle" by Elaine Gottschall) and/or the Maker's Diet (book by same name). We've talked about ideas for healthy weight gain like using virgin coconut oil either straight or in a smoothie of home made yogurt (extra beneficial probiotics). VCO has amazing healing and anti-candida properties. Also, I ditto what blueclassring said about starting a probiotic!

It's so great that you work at a health food store! Hopefully you can get a bit of a deal on things there! Instead of protein drinks for weight gain (whatever you do, don't use soy protein), you might consider making your own yogurt. Does anyone at your store make their own yogurt? If not, the book above, BTVC and the SCD website, explain how to make it for Crohn's--virtually lactose-free when fermented 24 hours. If you make it with half-and-half it will really help you gain some weight and will taste sooooo wonderfully rich! Good luck!!!
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/22/2009 6:32 AM (GMT -7)   
I would first off take some type of maintainence med always. I currently am able to take only Asacol to maintain my remission. The SCD or Maker's Diet help some, but not all. The diets will help with the symptoms, but the meds will help to keep the inflammation down. I personally live on a low residue diet all the time. I eat no red meat at all as it is very hard even for the healthy intestinal system to digest, it has to literally rot in your gut before it passes. I eat alot of fish, chicken and turkey. Veggies must be cooked to a soft consistency. This diet is easy to chew, easy to digest. You can google it and get more diet ideas.

I would suggest you also keep a diary of what you are eating daily and avoid the foods that irritate your system. Also, many have had success in controlling their disease with the immune suppressants.

Welcome to Healingwell and we look forward to hearing more from you.

Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

J-
Regular Member


Date Joined Jun 2009
Total Posts : 86
   Posted 6/22/2009 7:55 AM (GMT -7)   
thank you all!!!!!!

i see the gi doc at 2pm today, lets see what he says.

i dont want to take a immune kiler because i work with sick people all day long. wouldent that be the worst thing for me to do? one last Q for all of you wonderful people out there taking asacol, how long did it take to see any difference? im on 3 pills 3X a day....

thanks -J

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/22/2009 8:10 AM (GMT -7)   
Most folks on the immune suppressants like Imuran or 6mp usually do not get any sicker than others. Most just take more care with washing their hands alot etc. When I started the Asacol I was also on Prednisone for a bit to help quiet things down so I am not sure how long it took to see a difference as the Pred is a fast acting med. The Pred is to get the inflammation under control and the Asacol was to help maintain the disease.

I do believe the immune suppressants will be the best med to get your disease under control. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/22/2009 9:02 AM (GMT -7)   
I think a med is a good idea to do even with all the complentary suppliments and diet changes we make. You might need to do a different med if this one doesn't start working with in the next three months.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


J-
Regular Member


Date Joined Jun 2009
Total Posts : 86
   Posted 6/22/2009 9:29 AM (GMT -7)   
im going to ask him why not the pred with asacol to start. it seams to be what most do at first, and works. i wonder if i have it very bad or if theres somethings spacial about my case...

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 6/22/2009 10:24 AM (GMT -7)   
J, good for you! Be pro-active! It sounds like you are already!

As for meat, specifically red meat, it has been demonized by the establishment for decades now. It does NOT literally rot in your gut. Although I am aware that some people may not tolerate beef as well as other meats (due to INDIVIDUAL situations), true grass-fed beef, albeit a bit harder to find, is one of the healthiest foods we can eat, and digests with ease under the right circumstances (too often we combine foods with it that impede its digestion and THEY are the problem--meat and potatoes, anyone?). Additionally, you can actually eat foods that aid in its digestion. For instance, our ancestors of only a generation or two ago understood that eating fermented sauerkraut with red meat actually helps the digestion process along. ....back in a time when ALL beef was grass-fed, btw...

If you care to read up a bit about beef you may find this article helpful:

http://www.westonaprice.org/mythstruths/mtbeef.html

Here is a little quote from the article:

"What a shame we have demonized red meat because this is one modern food, enjoyed by almost everybody, that is rich in nutrients. Red meat provides complete protein, including sulphur-containing proteins like cysteine. Beef is a wonderful source of taurine and carnitine, needed for healthy eyes and a healthy heart. Beef also provides another key nutrient for the cardiovascular system-coenzyme Q10.

Beef is an excellent source of minerals like magnesium and zinc-you need zinc for clear thinking and a healthy sex life. The fuzzy-headedness that vegetarians mistake for heightened consciousness is really the fog of zinc deficiency. Vitamin B6 is abundant in meat, especially rare meat. Red meat is one of the best sources of vitamin B12, which is vital to a healthy nervous system and healthy blood. Vegetarians are especially prone to vitamin B12 deficiency. One of the first signs of vitamin B12 deficiency is a tendency to irrational anger--so much for vegetarian claims that we will have a more peaceful, harmonious world if we all just stop eating meat."
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 6/22/2009 10:40 AM (GMT -7)   
J- said...
im going to ask him why not the pred with asacol to start. it seams to be what most do at first, and works. i wonder if i have it very bad or if theres somethings spacial about my case...
You've lost 25% of your body weight in 3 months.  I would do what your GI suggests, JMHO.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 6/22/2009 3:05 PM (GMT -7)   
Talk to you doctor and let him know if you don't want to put out that much cash..He will understand.There are alot of alternatives that are cheaper.
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


J-
Regular Member


Date Joined Jun 2009
Total Posts : 86
   Posted 6/22/2009 3:50 PM (GMT -7)   
well after talking to him about the $700 tag on the immune suppressant, he said "well lets do pred then". i start on it in the am. hope all goes well when its time to get off it. basically we just went over the normal things about the disease. i did ask him to lump me into a 1-5 scale of severity. his answer was, "severe". also he said to look into a rice protein to help with weight gain.


thank you all -J

Post Edited (J-) : 6/22/2009 4:53:37 PM (GMT-6)


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 6/22/2009 5:15 PM (GMT -7)   
I disagree with nanners on some points. of course this is my opinion from my own experience (that is what shapes all of our opinions, doesnt it?) so take this with a grain of salt along with everything else you have heard here.

I have been on virtually every med available and all they did was mask symptoms to make me feel better, but the disease never got better and nor did i heal. i actually got worse and required surgery. so to say that you need to always be on some kind of medicine i believe is not wholly accurate. i have been med free for almost 2 years now and i am feeling the best ever.

i was on 6-mp (immunosuppressants) for over 10 years and i was constantly getting sick. if the anything was going around, i got it and i got wiped out. i'd be bed ridden for 1-2 weeks with the flu. it was very bad. (but that is MY experience). btw, no one knows the long term side effects of long term use/maintenance use of immunosuppressants. be careful with these.

i concur with what emom said about red meat. lamb and bison are better options than steak (ie cow). i do not have a problem with red meat (but i do with broccoli and corn). the trick with red meat is to get it grass fed and of course, like everything else, eat it in moderation.

i would also like to reiterate what emom said about diet. the scd and makers do seem to be the best for what we got, but they are hard to. but once it becomes a habit, say a few months, it becomes easy. you just have to adjust your eating habits. the best thing you can do, imho, is to eat low glycemic (ie no white bread or sugar or soda or processed foods). i firmly believe that diet helps, and for some it can seem like a panacea. we all respond to meds and food differently so everything is a crap shoot. try them all, but try the least evasive/harmful first. i'd rather change my eating habits than take pills for the rest of my life, but that takes a big paradigm shift to come to as we are programmed to take pills by our society to heal us. dont take the healing power of food for granted! you have a leg up on most as you work in a healthfood store. use it to your advantage!

if you want to go the med route right away, i'd go with prednisone. that will help you faster than immunosuppressants as they take like 3 months to work, if they do. save the biologics (ie remicade, humira) as last resort as they are very powerful.

also remember that with any medicine there are always side effects. most are slow showing long term things, so keep that in mind with anything you take. trust your doctor's advice, but do your research to verify and question the doc before you take anything to be certain the risk/benefit is worth it for you.

i believe that there is a balance somewhere between meds and diet. the problem is we are so different that you have to discover this for yourself. some can control it with just meds, others with just diet. some need both. some are always in constant trouble. it blows. do a lot of research and be patient. just remember, no matter how bad it is, some one else has it worse.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 6/22/2009 6:04 PM (GMT -7)   
Just a quick note to say that if it is the painful mouth ulcers you are having, ask your doctor to prescribe Kenalog in Orabase. I have found this to work the best at reducing the length of time for those little monsters. It comes in a little tube of paste that you put on at night. It has a steroid in it. Good luck, I hope you are feeling better soon.

J-
Regular Member


Date Joined Jun 2009
Total Posts : 86
   Posted 6/22/2009 9:58 PM (GMT -7)   
Crazy Harry,

I love you!

you give hope to some one that argues doctors logic on a daily basis. "take this for that, take that for this" last time i went to the doc was 6 years ago. hell, i cant even remember the last time i had the flu or a cold! i take care of myself very well for a 23 year old (i like the jack and smoke 1/2 a pack a day) but asides that its 100% doing everything as healthy as possible. i quit drinking now and the smokes are next....

what burns me is i do everything as healthy as i can and i get sick. a week ago i watched my roommate drink 3/4th a 5th of jim beem and eat a large pizza. i figured it out and thats over 2000 calories in a sitting! he trashes his body every day....

i know long term it will catch up, im just venting. sorry.


my plan is to get it under control with meds (2 months of my hoo-ha diddnt help) and change my lifestyle to what it needs to be. then im with you buddy, pills dont fix the prob. always my opinion... not always right. everythings worth a try tho, right.
diagnosed with crohn's 6-15-09 at age 23.

asacol: 400mg. 3 3X a day
prednisone: 10mg. 3 in the morning

Post Edited (J-) : 6/22/2009 11:09:54 PM (GMT-6)


Russ Nobbs
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/27/2009 11:15 AM (GMT -7)   
Hey J:
Listen to the folks who describe SCD. Read the book. Check out the websites given. It might not work for you but it works for 1000's of people even if there is no drug company financed double blind study proving it. Try the diet and consider weaning yourself off the meds after most symptoms are gone. Be honest with docs, some will support you because they have other patients who succeed with dietary changes.

Good luck
Crohn's since 1996, Rx of Sulfa & Pred helped symptoms, but turns out I am deathly allergic to Sulfa. Sulfa nearly killed me with "drug fever" and finally kidney failure. I survived and discovered SCD diet, Chinese herbs, Probiotics, Fish oil. etc. Exploring theory that physical trauma may be root of my autoimmune disease.

Today Rx med free and mostly symptom free. Turned 65 in'08.
SCD does not work for everyone. (Neither does every drug therapy work for every one.)
But SDC DOES work for 1000's of IBD sufferers.


J-
Regular Member


Date Joined Jun 2009
Total Posts : 86
   Posted 6/27/2009 12:58 PM (GMT -7)   
ok russ. i like the way you think!

thank you!
diagnosed with crohn's 6-15-09 at age 23.

meds:
asacol: 400mg. 3 3X a day
prednisone: 10mg. 3 in the morning

supplements:
multivitamin, cal/mag, probiotic, digestive enzymes, rice protein. looking into l-glutamine next

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