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Regular Member

Date Joined Sep 2008
Total Posts : 211
   Posted 9/6/2008 12:53 PM (GMT -7)   

I am extremely grateful to have found this site—I am from a small town the support for Crohn's here is nearly non-existent.


My story is similar to a lot of yours.  I have had symptoms for years and was actually scolded, for lack of a better word, by my family doctor for not coming to see him sooner.  It took getting the flu and finally going to the doctor about it after being sick for two weeks to start my diagnosis.


I was first diagnosed with IBS in January of 2007 and told that it was just flaring up due to the flu. I was given Librax for the IBS 2X’s a day and went from Zantac to Prilocec for my acid reflex.    I literally suffered until December of 2007 with the flare up to the point where I didn’t leave the house.  My dad took my son to school, would stop at the store for me etc…  I did manage to get to work, yet would miss about three days a mouth with uncontrollable diarrhea, cramps, nausea, etc…  My family doctor started testing my gallbladder (ultrasound) and did an upper GI to diagnose my acid reflex. 


After the bloody diarrhea became persistent I was FINALLY referred to a GI doctor.  He thought it was Crohn’s based on the initial visit and ordered a small bowel x-ray, MRI with barium enema and a colonoscopy.   He was not 100% sure which it was and passed my case to my current GI doctor (my first Dr. just retired) where after a few more months of blood tests, Hida Scan and getting my gallbladder removed he diagnosed Crohn’s. 


So…here I am trying to figure this disease out and how to live my life.  I am starting to decline my Endocort from 6mg a day to just 3 mg a day and am taking 400mg of Acacol 3 tablets 2X’s a day.   I just finished iron therapy due to my iron count being back to normal for two months. 


Since I am new to the disease I am wondering if you all could help me as far as diet, exercise, etc…  I appreciate any advice.

Rider Fan
Veteran Member

Date Joined May 2008
Total Posts : 1445
   Posted 9/6/2008 2:19 PM (GMT -7)   
Welcome HM. Just wanted to say that I see you're on Entocort so be sure to take extra Calcium citrate and Vitamin D. Very important but sometimes GI's miss this.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 3mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).

Veteran Member

Date Joined Apr 2006
Total Posts : 1665
   Posted 9/6/2008 2:26 PM (GMT -7)   
welcome; you have found a great place. have you had all those tests yet? as for diet, you will hear lots of ideas, but most people find a low-residue diet to be best at first or when flaring. as for exercise, it depends a lot on how you feel. some of us are able to be very active, some are far too ill, and lots of us of are in between. how are your symptoms and quality of life?
I always try to warn new folks to not panic and know the first months are really stressful, but things often settle down. keep asking questions and reading posts here and you will learn a lot, but try not to let the things you read scare you and just because you read about something doesn't mean it will happen to you :)
take care, yp
49 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.

Regular Member

Date Joined Jul 2006
Total Posts : 330
   Posted 9/6/2008 3:47 PM (GMT -7)   

Welcome! You'll find this site really good for information and advice, as well as a wonderful place to vent when things aren't going well. We're all in the same boat and understand, whereas many of our friends and loved ones don't know what we go through with this DD sometimes. I definitely second everything Yogaprof said - it can be a really rough time adjusting to your diagnosis, and the vast array of symptoms that can occur with this disease. Many people have mild cases and will be fortunate not to ever have some of these problems in their lifetime. When I was first diagnosed, I did a big internet search and scared myself half to death! Now I just take my symptoms one at a time and don't panic when I have something new. I've found great advise when consulting others you will too. Looking forward to hearing more from you.

All the best to you,


Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 9/6/2008 5:18 PM (GMT -7)   
Hi Welcome to Healing Well so glad you joined us here as mentioned there are different levels of CD from mild, moderate to severe. I follow low residue diet and probably always will. I do take viamin supplement ,B-12 shots once a month and calcium and vit. D so well stocked for vitties as I have been on prednisone and had some terminal Illieum removed. There is lots of support and help here so post anything you have concerns about or anything .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Veteran Member

Date Joined Mar 2007
Total Posts : 900
   Posted 9/7/2008 12:19 AM (GMT -7)   
Welcome to Healing Well.... You will find this such a comforting place to be... you can vent , complain... question...there will always be someone to help, support and encourage.
Glad you found us... keep posting so we can all get to know you better.
51 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.,RLS, arthritis, PTSD ,general anxiety disorder.

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 9/7/2008 4:53 AM (GMT -7)   
A few things I've learned(or am still learning):
Keep a food diary
Do NOT overexert yourself. If you start to feel pain then for god's sake rest.
Start learning to say no..I've made the mistake of giving in a few times(like to eat or go out even though I was tired) and it did not end well
Be prepared for some pretty low days but remember it's okay to cry or feel completely lost. Crying can make you feel better anyway.
Don't let other people who are not going through this try to blame you for having this disease, and don't let others' reactions hurt you. I know some of us don't look sick sometimes and people don't understand that we're dying inside. Just keep in mind their perception due to our external appearance heh...I forget sometimes but try to remind myself: zen. One of the greatest concepts to me.

Also, I can't say anything definitive on diet since we're all different and tolerate different things. My safe foods are unsalted saltines, chicken and rice soup or chicken noodle soup(both from chunky are pretty good to me but have added ingredients I would rather not eat I think), bread pudding, 100% juice products, cheddar cheese(aged cheeses have much less lactose and are therefore more tolerable to consume), kefir, popsicles, rice, eggs, salmon, tuna, chicken, LEAN red meat, and so on.

You might try looking into Elaine Gatschall's SCD-Specific Carbohydrate Diet. I started to loosely follow it recently and it seems to be beginning to work.
There are also herbal supplements you can try taking. I take bee propolis which is a natural anti-inflammatory. I want to try taking a few others soon like l-glutamine, boswellia and simple garlic tablets. Of course I'll be asking my doctor so..
Maybe try asking yours about things like that.
Definitely look into probiotics!! I take acidophilus every day and it makes a huge difference!
And then of course there are digestive enzymes.

Umm...I suppose that's all I can think of for now. Thank you for sharing your own experience so far..I'm so sorry it happened that way(or any way for that matter). Keep us posted on how things are going and please don't hesitate to post simply to vent or leave a passing comment! It would be great to hear more from you.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.

New Member

Date Joined Aug 2008
Total Posts : 14
   Posted 9/7/2008 8:55 AM (GMT -7)   

Hi there, LMills is right on.  Lots of people confuse how you look on the outside and presume you are not all that sick on the inside.  Some Dr.'s do too.  I have had some say " well you look good , can't be so bad"  Ha! Alot of times i make myself get up and get dressed just so my kids don't see me as "always sick" 

Anyway, a low residue diet seems to be the common thread beteen most cd patients. Just try new things when you feel well and if they agree ok, if not- don't eat them.  Not much help but everyone is so different.  I have recently gon gluten free, and can't believe how much better i feel.  I wish i had the disipline to do the SCD but i don't so i just do what i can.

Probably the best advice i ever got was if you feel tired- rest, don't push yourself- you'll pay in the end.  Good luck to you, hope you feel better soon.




Regular Member

Date Joined Sep 2008
Total Posts : 211
   Posted 9/7/2008 10:00 AM (GMT -7)   

Thank you all for your thoughts and the warm welcome. 


I believe that most are simply ignorant about this disease and like a lot of you have said just don’t see how “yuck” we feel on the inside.  My family very female dominated and we are expected to do get though the day no matter what, which has helped me tremendously as far as getting though my days.  I have established over the last about 5 years “down time” with my kids.  We are in the house and getting around for the next day by 7 or so.  We will finish up odds and ends for the next day, go though what we are going to do the next day, lay in bed for reading and then go to bed.


I actually find it easier to admit that I am tired or having a bad stomach day since I have been diagnosed.  It has actually been liberating to realize it is not all in my head. 


I recently didn’t go to my cousin’s birthday party because it was a 40-minute car ride and I just was tired.  I thought about taking some Imodium and just going, however I thought better of it because it was a Sunday and the week before school started for my kids.  I knew the next week was going to be full of open houses, running to the store in the evenings to pick up extra school supplies, etc…  Also, it was the week the college students came back to campus and working in the Registrars’ office means being on my feet a lot that week at work.  My family didn’t say anything about this and my folks took my kids, so it all worked out.


I am declining the Endocort and have more pain across my mid-section at the one-week mark.  I am going to tough it out a few more days to make sure it is just withdraw from the medication.  I have been on it since January, so I have to believe some withdraw is normal. 


I appreciate all the diet advice.  My GI doctor told me to find what works for me and I have been experimenting. 

35/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with UC, then Crohn’s 2008

Current medications: Endcort 3mg 2X daily, Asacol 400mg 3 tablets 2X daily, Prilosec 20 mg 2X daily, Probiotics, Calcuim/Mag/Vit.D. garlic and Vit. C 500mg daily

Regular Member

Date Joined Jul 2007
Total Posts : 239
   Posted 9/7/2008 7:40 PM (GMT -7)   
Welcome! I've been on entocort 3 or 4 times, I'm on it right now. My doc told me the first time that if the symptoms came back when tapering the dose, or when I was completely off of it, to let him know right away. That means the inflammation that went away on the higher doses has come back. And that's not good! So you might want to call and let them know. One thing I have learned from this disease is DON'T try to be supermom and DON'T try to tough it out. I always did, for years, and that's how I ended up with a resection. Now I am calling or making an appointment if something isn't right. I had mild D and some pain, nothing major. I was on Imuran but my doctor did a colonoscopy, and sure enough there was obvious disease. We caught it early so maybe new meds will keep it from getting as bad as it did last year. Two years ago I wouldn't have dreamed of calling the doctor with the 'minor' symptoms I've been having. But now I know that 'minor' symptoms can mean the start of something major.
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, vicodin as needed, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.

Regular Member

Date Joined Sep 2008
Total Posts : 211
   Posted 9/9/2008 4:32 AM (GMT -7)   
Thank you kimberlayn! I called my doc after reading your reply and he told me exactly what you mentioned. I am going to go back to 6 mg a day until the end of Sept. and then calling to check in with my doc. He told me not to worry about being on the Endcort since Jan., that it sometimes takes up to a year.

Has anyone else been on Endcort that long?

35/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with UC, then Crohn’s 2008

Current medications: Endcort 3mg 2X daily, Asacol 400mg 3 tablets 2X daily, Prilosec 20 mg 2X daily, Probiotics, Calcuim/Mag/Vit.D. garlic and Vit. C 500mg daily

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