Mild Case & Holistic Alternatives?

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Riss
New Member


Date Joined May 2008
Total Posts : 16
   Posted 5/8/2008 2:55 PM (GMT -7)   
Hello Everyone!  I am very new to this as I was just diagnosed with Crohn's last Monday (4/28/08).  Just a bit about me before I get to my question(s).  I'm 24 F, Los Angeles, CA, currently taking Pentasa (4 pills 4x / day).  The symptoms I have had are, since 2003 a chronic fissure - tags eventually formed.  This caused pain and bleeding whenever I went to the bathroom.  I had abdominal pains on and off for 4 weeks May 2006 and again on and off the past three weeks.  I don't have any problems with bowel movements.  I go usually every other day with normal consistancy.  A colonoscopy and biopsy this past Monday are what diagnosed me.  My Colon/Rectal Doctor said it appears I have a mild case of Crohn's.  First question...is there such thing as a mild case?  I saw a Gastroenologist for the first time yesterday and it really upset me...he was a bit of a negative nancy.  He has suggested an MRI and endoscopy for further tests and even suggested more sophisticated medication which I'm hesitent about because I honestly don't feel sick.  I know this disease is serious and lifelong - I've read your messages on this board about your experiences and I've read many articles about the disease.  I'm quite scared about what my future with this disease will entail.  I'm trying to keep a positive attitude about this and would like to take a holistic mind/body approach to controlling this disease before it has the chance to get worse.  Does anyone have any holistic alternatives or experiences that have helped or work with crohn's disease?  Many thanks and blessings to everyone.

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/8/2008 2:59 PM (GMT -7)   
Don't let your doctor's negative disposition get you down. I know it's difficult not to be affected by their attitude, but I think that in certain cases it needs to be taken with a grain of salt. The first doctor I went to see about my own disease(which is most likely crohn's according to my GI) is one I will never go back to. I think you just need to find the right one with the right attitude.

I'm not sure about alternative medicines. I've heard probiotics are very good for this and another multivitamin that helps those of us with this condition. I'll have to ask for the name again, but I also heard it works wonders.

I'm sorry you're having to go through this...

As for mild cases, think of it this way. It wasn't bad enough that the doctor said your colon needed to be removed immediately. I think you'll be able to manage with the proper diet and medication. Keep your positive attitude too...I think that that's one of the most important things you can do :)

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 5/8/2008 3:26 PM (GMT -7)   
welcome riss, sorry you have to been here, but you have come to a good place. FIRST, remember that many folks here are quite ill, so don't get scared by what you read. the people who have been diagnosed, find the right meds or get through a flare and then never are sick again don't tend to post. you are right to keep a good attitude, this disease has a huge continuem of levels of illness. again, don't freak out by what you read! so there are those who have found great relief through different diets, and you will read about that here. I have given up gluten and turned my symptoms around. I am lucky. I also teach and practice yoga, which always is good. as for other things, I am sure you will get several opinions. there is no one answer, as we all are very different. try to get through the coming tests and appointments and keep asking us questions. take care, yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 5/8/2008 3:48 PM (GMT -7)   
It's very likely that you are a mild case...it can vary from mild, moderate to severe from person to person and sometimes from flare to flare as well...researchers have already discovered a cluster of genes that predicit the behaviour and severity of the disease from person to person...this is a very individualistic disease...chances are you many never find 2 CDers completely alike.

Getting treatment ASAP and learning about the disease and how YOUR body reacts can also be key in keeping your CD under as much control as possible...some people (like me) don't even respond to traditional oral meds, but many (like myself) can find some relief with natural supplementation...you may want to consider taking a good probiotic since us IBDers tend to have bacterial over-growth which tends to exacerbate our symptoms for us and they're completely safe as they are just good bacteria that line the GI tract and help keep the gut flora balanced...too much bad bacteria can cause D and/or exacerbate our symptoms.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 5/8/2008 8:24 PM (GMT -7)   
I take Humira for what I would consider sever crohn's. Previously on Remicade and Methotrexate. I tale Kyo-dophillus and it seems to help. I do yoga at home and try to get good sleep and excercise everyday! Everyone can be so different. I am lactose introllerant, no nuts, peanuts, seeds, etc... I could go on and on. It's all about individually figuring out what works for you. Take care and best wishes.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 5/8/2008 9:06 PM (GMT -7)   
Welcome to the forum, Riss! Sorry you have to be here, though.

My son seems to have a mild case of CD and we are trying to approach this with dietary changes and supplements. (He does currently take Asacol, though--similar to Pentasa) Two great books I will recommend are The Maker's Diet, by Jordan Rubin, and Breaking the Vicious Cycle, by Elaine Gottschall. The latter has a popular diet for folks called the Specific Carbohydrate Diet (SCD). There are many SCD recipe books on the market, so once you are beyond the intro diet, it isn't that restrictive. And as yogaprof said, you can read about folks' experiences here with these diets.

Good luck to you!!!
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 5/8/2008 9:11 PM (GMT -7)   
I also have, at this point, a fairly mild case. Most of the time I don't feel sick and my bowels function as they should. However when the Crohn's is active I can get high fevers and abdominal pain, but only pre-menstrually...still have not figured that one out. The GI I saw tried to get me on powerful drugs since some of my antibody titers on the Serology 7 test were way high but so far I'm not on any prescriptions.
 
I used exclusive enteral nutrition, aka food in a can, to achieve remission. It works if you have disease in the small bowel (small and large is OK too). The only side-effects were mildly elevated liver function tests, which went down after I started eating food again, and diarreah in the beginning...what do you expect if you drink your food? Luckily it was painless. I tried mostly eating real food again and the inflammation came back within a month, as I'm not currently taking any maintenance drugs. I'm still figuring out how I'm going to stay well long-term using this strategy, or if it's even possible. Now I'm also adding Omega-3 and a strong probiotic among other supplements. I'm hoping that between supplements, probiotics, and diet I can keep it under control. And I also felt a lot better when I was exercising regularly, but I just don't have time for that right now.
 
When you fit into the "mild" category, you'll find that the side-effects of many of the current drugs are worse than how you feel and the risks seem too great...and no companies are out there making new, benign treatments for mild Crohn's. So you have to try to find your own way to remission or get bad off enough to need the drugs. Lately I read a lot to learn new things about nutrition, supplements, etc. and I monitor my situation carefully. I get blood tests about once a month to measure my inflammatory markers so I'll know if I'm doing something right or wrong.


July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying...
Enteral Nutrition, Omega-3 (Flax Oil and Fish Oil), VSL#3, Vitamin E, Folic Acid, Psyllium


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 5/8/2008 9:19 PM (GMT -7)   
Illini :)

There is a strong link between hormones and exacerbation of IBD symptoms, this is common with IBS as well so that will explain why you have issues (as I and many of us do) during that time of the month.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 5/9/2008 5:06 AM (GMT -7)   
Hello Riss,

Crohn's is an actual disease. Your body -- for reasons we don't yet understand -- has decided to attack itself. CD is not something that happens because you aren't eating right, exercising, or meditating. That said, it appears that diet can lesson symptoms caused by the inflammation. And de-stressing is always a good idea! I have CD in the rectum. If it weren't for two fistulas/setons, I would have no idea I had CD. So like you I wonder if I should just ignore it and skip medications -- but I understand that this disease causes inflammation which can lead to more damage. And I don't want any more, thank you very much!! I suggest you take the meds your Doc suggests for a while. Get the inflammation under control so you won't get more damage. Later, you may be able to lessen the meds.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/9/2008 8:12 AM (GMT -7)   
Hi Riss,

I am new to Crohn's too. I was just dx'd about 3 weeks ago. I've been around Healing Well for three years, but posting on the Lupus Forum.

New dx really does make your head sping. I felt like I was hit in the head with a brick. . . .but really feeling much better (mentally) this week . . . thanks to reading and posting here with these very helpful folks. I was trying to decide about the meds too. I'm still waiting for blood test results, but my GI is favoring Entocort and I was really scared to take a long term steroid . . . but I also don't want to have the inflammation go on to do permanent damage either.

I hope you find some good info here and . . . hang in there!! You'll find yourself feeling better (mentally) after you've gathered your info and made a couple decisions about meds and all.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


bedsideangel
Regular Member


Date Joined May 2008
Total Posts : 22
   Posted 5/9/2008 8:40 AM (GMT -7)   
riss,there is nothing wrong with getting a second opinion.some docs know there stuff but the bedside manners sucks.When iwas dx.with chronns(during a hysterectomy)another gidoc was on call and i liked him a lot better then his partner and stayed with.it never was a problem.my piont is get a doc you are comfortable with
55yrold female.dx.ibs in 1981,cd in 1987,multipl surg.on 6mpand entocort.


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 5/10/2008 10:10 AM (GMT -7)   
I agree, definitely get a second opinion -- finding a GI that you are comfortable with makes all the difference in the world.

I also live in the LA area, and highly recommend a consultation with Dr. Stephan Targan, head of the IBD center at Cedars-Sinai. He is an international expert in Crohns and Colitis, does lots of research, and I believe he created the Promethius tests that are used widely today.

It can take 6-8 weeks to get a consultation appointment, and he will give you treatment recommendations, but then turns you back to your GI for ongoing treatment/monitoring. If you google him, you will find his contact info at Cedars. He would be able to answer your questions about how aggressive your medication treatment needs to be given your symptoms.
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Entocort, and Remicade
On Humira since 1/08 with promising results, but can't get below 5mg Prednisone
Take Tylenol #3 as needed when not in close proximity to a bathroom.
Currently on 40mg Prednisone again since mid-March flare, ack
4/9/08 Humira dose increased to 40mg/week, Start slow Pred taper

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