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03-01-2013, 08:02 AM   #1
Hope345
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Crohn's Colitis Support Group

About this Support Group

Welcome to the Crohns Colitis Support Group.

This support group will help you connect with others that may have Crohns in the same location and many similar symptoms.

Crohns Colitis can affect any part of the colon.

Although each person with Crohns Colitis may have different symptoms, some of the symptoms may be more specific to this location and we may be able to help each other out with treatments that have worked.

Symptoms you may be experiencing (some only during a flare):
Abdominal pain, often in the lower right area, below belly button and rectum
lower left area pain
Diarrhea or unable to have a bm for several days
Excessive Gas
Bloating
Rectal bleeding.
Obvious blood and mucous in the stools
Rectal fistulas, abscesses
Anemia, often extreme ongoing anemia
Fatigue
Rash
Scleritis


Treatments: Treatment for Crohns colitis will be similar to other Crohns treatments. Each person/parent will decide on the best treatment possible to stop the inflammation:

6-MP Prednisone, Entocort, Flagyl, Remicade, Prednisone, Asacol, iron infusions, .......

Common Supplements: Multivitamin with iron, Vitamin D (1000iu), Calcium (1200mg), Omega 3 Fish Oil, Probiotics (Acidophillus), Milk Kefir,

Extra treatments: Cortifoam, Steroid creams or steroid enemas. These treatments are done at home. They are extremely effective and can help heal the anal, rectal and sigmoid areas of inflammation, bleeding and pain.

It is recommended to see an Opthamologist every two years.

Please add any comments or questions you may have in helping others or finding treatment and support for yourself.

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Last edited by Hope345; 06-28-2013 at 11:53 PM.
03-07-2013, 09:54 PM   #2
Hope345
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My daughter has Crohns Colitis and we will adding starting Milk Kefir to her diet. This should help add good live bacteria to her gut and possibly bring her into remission. Have any of you tried kefir?

Currently she is taking Acidophillus (probiotic) tablets along with her Medications (Remicade, Asacol, Cortifoam, and she is symptom free.

Last edited by Hope345; 04-24-2013 at 08:52 AM.
03-07-2013, 11:11 PM   #3
three crows
 
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Hi Hope. I haven't had Kefir for a long time. My sons and I enjoyed it when they were younger. I had something similar when in Ireland back in 2000, so when I found it here I began to buy it. I think there may have been a recall of the brand that was in my store (years ago) and that was when I got out of the habit.

Is it unpasteurized or something like that? I forget now, sorry. Feeling a bit fuzzy-headed today.

Anyway.. I am now on the Specific Carbohydrate Diet and I am just using my homemade yogurt for rehabitating my gut with the happy bacteria. That diet stresses the importance of avoiding bifidum/bifidus because it can kind of take over (? i think?) The only recommended bacterium is acidophilus. I hope I have that right. I need a refresher of the SCD basics. ) I will keep a look out for the information regarding Kefir and let you know if I find anything.
03-08-2013, 12:05 AM   #4
Hope345
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Three crows,
Hope your diet is working well for you? has it put you into remission along with your yogurt?

I looked up both of those bacterium, and they both said friendly flora. I want the friendly flora to take over, so maybe in IBD it would be good... hmmm I have no idea, where is an expert when you need one?

The homemade yogurt sound like a great idea too...
03-08-2013, 01:06 AM   #5
three crows
 
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Three crows,
Hope your diet is working well for you? has it put you into remission along with your yogurt?

I looked up both of those bacterium, and they both said friendly flora. I want the friendly flora to take over, so maybe in IBD it would be good... hmmm I have no idea, where is an expert when you need one?

The homemade yogurt sound like a great idea too...
Hello again,
I'm not in remission (yet). The yogurt is wonderful. The diet is not the easiest thing to do because of the restrictions to most (almost all) processed foods and additives. So, I would understand if someone said they just couldn't hack it. BUT, it has many thousands of happy and more-healthy-than-they-were followers.

The origin of the SCD and all the details are outlined in the book, Breaking the Vicious Cycle. You can find more info here on the website: http://www.breakingtheviciouscycle.info/home/
The author, Elaine Gottschall, talks about probiotics too, but i couldn't find a link quickly.

This is the page that I remembered that discusses the bifidum concerns: http://www.pecanbread.com/p/probiotics1.html

I think the concern with bifidus is that in a gut that is not healthy or if it may have been depleted of all bacteria because of antibiotics, and it's trying to re-populate and balance, the bifidus can rapidly over-grow the other good bacteria. I think that's the concern. But read it for yourself and see if it makes sense to you. I'm not trying to sell anybody on it, and I tend to be a cynic. Hey, I took an acidophilus & bifidus combination for years and thought it was doing a good job. But then I had a major flare. So, I really don't know 100%.

I would suggest checking out the rest of the Pecanbread website. It is a wonderful resource for all kinds of things related to the Specific Carbohydrate Diet, diet in general, and it is aimed mostly at parents of children with autism spectrum, ADHD, etc- many whom also have digestive problems or diseases.

BUT, even if you or your family does not suffer from autism or ADD or anything like that, the pecanbread website is just chock full of good info and lots of ordinary adults who are starting the SCD find it to be helpful.

I hope this all makes sense, it's getting really late here! Haha what am I still doing up?

'night all!
03-21-2013, 06:15 PM   #6
loveleen garg
 
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Hi everybody....
Tell me some good eatables for crohns?
03-21-2013, 08:27 PM   #7
Hope345
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Hi Loveleen garg:

Welcome to the forum

Check out the SCD . Juicing works for some.
What are your current symptoms and what foods have been working or not working for you?
03-21-2013, 09:48 PM   #8
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I have many of the symptoms listed, but I don't see excessive gas listed as a common symptom. It sure seems related to crohns-colitis, at least in my case. I seem to remember a doctor telling me the open sores of colitis inside the colon can create or cause gas. My worst "episodes" involve gassy diarrhea. I think some folks on the forum refer to this as "explosive" diarrhea.
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DX: 2002 Ulcerative Colitis
DX: 2012 Crohns-Colitis
DX: 2013 Perianal Fistula (Fistulectomy)
03-21-2013, 10:45 PM   #9
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Grouchy said: I have many of the symptoms listed, but I don't see excessive gas listed as a common symptom. It sure seems related to crohns-colitis,
You are right. I will add that to the list. I know it seems to be worse at different times: like right before and during a flare.

Last edited by Hope345; 03-24-2013 at 01:37 AM.
03-22-2013, 10:44 AM   #10
CrohnsChicago
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What you are able to eat/the type of diet your body is able to tolerate depends on your condition and the symptoms it presents.

Do you find eating to be a painful experience/one that produces D and other symptoms? Also, do you have obstructions/fistulas/abscesses/etc?

Personally, I can eat anything in moderation with the exception of broccoli. My body does not enjoy breaking down this high fiber food and it causes me lots of pain that can bring me to tears.

I also tend to stay away from milk it makes me bloated and gassy. Greek yogurt, eggs and aged cheeses are fine for me personally because they have less lactose in them. I also juice and make smoothies. Those have proven to be the most beneficial and work pretty fast in making me feel healthier and like I have more energy.

But again everyone is different and not everyone responds to food the same way.

Have you ever tried an elimination diet before to try and pinpoint food that your body may not accept as well as others?

Hi everybody....
Tell me some good eatables for crohns?
__________________
Crohn's-Colitis May 2012
Current Meds:
6-MP (100mg) / Asacol (4800mg)
Past Meds:
Prednisone/ Entocort / Flagyl
Current Supplements:
B12 Shot (1cc/mo) / Multivitamin / Vitamin D (1000iu) / Calcium (1200mg) / Omega 3 Fish Oil (4800mg)
Additional Info:
Anemia/Borderline Anemia - whole life
Generalized Anxiety Disorder - 2009 (Cognitive Behavioral Therapy, mindfulness meditation)

03-24-2013, 11:04 AM   #11
loveleen garg
 
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Hi Hope345!!!

Currently i'm taking medicine and feeling relief from symptoms.
03-26-2013, 04:44 PM   #12
carrollco
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I was initially diagnosed with Crohn's Colitis, but when I became vitamin deficient it became 'just Crohn's'. My GI said there is no reason to check the small intestine because treatment is the same. For me, it's Humira. Anyone else have that happen?
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First diagnosed 12/4/10
Humira 4/7/11 and lovin' it


Previous Meds:

Methotrexate--had kidney/liver damage
Lialda--allergic to aspirin--but didn't know until my Crohn's got much worse.
Prednisone--only when I have to!
03-26-2013, 04:53 PM   #13
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If i were you I would push for additional testing. That sets my alarm bells off a bit that he changed diagnosis simply because of a vitamin deficiency.

Yes, treatment may be the same....however it is important to know exactly where the disease is and its severity not only for peace of mind, but to make sure there are no future risks of complication that can be detected and to make sure your treatment plan best suits you and your condition overall.

If he won't test to check on the extent of the damage, I would absolutely get a second opinion.
03-26-2013, 04:59 PM   #14
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His answer made me a little uncomfortable which is why I posted here. Thanks for the advice. I will follow through with it.
03-27-2013, 02:20 PM   #15
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What medicine's have helped you or a loved one resolve this issue of seemingly chronic diarrhea.

I've had this symptom for a few months, although I did have a couple of weeks where it went away. I have kept a food diary (w/results) but haven't really learned anything from it. I did the BRAT (Banana, Rice, Applesauce & Toast) diet for several days. That didn't seem to help. My stomach is not churning every time I eat something like it normally does during a flare. I'm only having BM 1 or 2 times a day. Everything seems fairly normal, except I have Diarrhea and gas 95% of the time. I don't think I'm having a flare. Is that just something you have to live with?
03-27-2013, 05:35 PM   #16
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For me, it's something I live with. I was in remission for over 20 years and then bam, the mega flare hit. I have had symptoms every day for almost ten years now. Lomotil works, but it scares me since I have narrowing. I usually just live with it. Some days it's better, some days it's worse. I just never know.

What medicine's have helped you or a loved one resolve this issue of seemingly chronic diarrhea.

I've had this symptom for a few months, although I did have a couple of weeks where it went away. I have kept a food diary (w/results) but haven't really learned anything from it. I did the BRAT (Banana, Rice, Applesauce & Toast) diet for several days. That didn't seem to help. My stomach is not churning every time I eat something like it normally does during a flare. I'm only having BM 1 or 2 times a day. Everything seems fairly normal, except I have Diarrhea and gas 95% of the time. I don't think I'm having a flare. Is that just something you have to live with?
04-04-2013, 08:29 AM   #17
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Another Crohn's colitis diagnosis here.. Technically in remission I guess.
Often have Dx1 in the morning, then sometimes a formed offering in the evening. No bleeding or iritis for 3 years. Joints tend to complain without any particular cause...
Overall, things could be far worse - I tend to avoid lettuce, and oranges, apples and other raw salad veges. I figure it's all about optimizing the management (am a big fan of probiotics, vitD and keffir)
04-04-2013, 09:45 AM   #18
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Hi there everyone, I am sure you will all have all worked out by now,good diet does not stop Crohns attacking when it decides to! When your consultant discovers the med that works for you,to reduce inflammation then great. Inflimab has worked for me_back to normal inflammatory levels! However infection and weakness means treatment is on hold. We are all individuals and respond differently.Look at what foods make dia worse and avoid. For me that is simply creamy or cheesy sauces. Too rich. Pro biotics made me double up in pain! Enjoy the food you like most of the time. Best wishes to all. p.s.It is a rotten illness!!!!
04-05-2013, 10:38 PM   #19
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Our daughter, age 14, has had Crohns Colitis symptoms for 2 years, and diagnosed a little over a year ago.

After what seems like a year of non stop bleeding, pain and inflammation, she has had 2 wonderful weeks of no symptoms.

She just had her 8th remicade treatment today which was doubled last time. She takes Asacol, uses Cortifoam nightly and Acidophillus daily along with multi vitamin with iron.

She has been eating EVERYTHING, with no problems. It has been like a miracle.
However, I am planning on getting her on a better diet plan

Just thought I would share what has been working and wishing the best for all of you.
04-05-2013, 11:32 PM   #20
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Glad she's finally doing well Jules! I hope she continues doing well forever! She is lucky she's got such a good mom looking out for her and always looking for ways to help her condition.
04-08-2013, 05:20 PM   #21
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Hello, Im new to the group and I am in need of advice. I have alot of flareups and my stomach gets huge and its very uncomfortable and painful. I am so so hungey but everytime i eat my stomach gets bigger!!!..any ideas??
04-08-2013, 08:03 PM   #22
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Do you believe it is trapped air or are you backed up with poo?

These are both common symptoms with Crohns. Sometimes a mild laxative like Miralax is recommended. A stronger laxative may be necessary but can be very hard on the colon.

Last edited by Hope345; 04-24-2013 at 08:59 AM.
04-08-2013, 10:18 PM   #23
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Hello, Im new to the group and I am in need of advice. I have alot of flareups and my stomach gets huge and its very uncomfortable and painful. I am so so hungey but everytime i eat my stomach gets bigger!!!..any ideas??
Bloating can be a common symptom.

Have you ever been checked out for bowel obstructions or narrowing of the intestines? Do you experience a lot of pain? How long does the stomach bulging last after you eat? Until you pass gas or poo? Does your stool look out of the ordinary at all (is it Diarrhea and does it look odd in color or thickness/thinness)?

Have you discussed any of this with your doctor. I highly recommend that you do in order to rule out anything serious.

In the meantime, maybe try ginger or peppermint which are good natural tools for moving digestion along and helping relieve gas and nausea.
04-17-2013, 09:56 PM   #24
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Hi, another C-C person here, joining up! I am pretty sick right now - pain and heartburn like never before. After 4 years, I am 'only' on Asacol while I decide whether to go on something stronger - 6 Merc. Thought of Immune Suppressant scares me, so am getting a 2nd opinion soon.

Good luck to us all!
04-17-2013, 10:58 PM   #25
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Welcome to the group angie.
that is great that you had been doing so well on Asacol.

Have you had recent colonoscopies, endoscopy, pill cam, or MRE to see what is going on?
04-17-2013, 11:17 PM   #26
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Yes, all of the above except MRE (what is that??). 4 scopes in 2 years!! Dr goes back and forth as to exactly what it is, different every time. Hence the 2nd opinion is needed I think. I am in pain these last 3 days for the first time really. I think it is diverticulitis, as the Dr saw that once.
04-17-2013, 11:24 PM   #27
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Oh I looked up MRE - no thanks! Sounds like an MRI tube - which I freaked out in once when I had it for my back!
04-18-2013, 02:45 AM   #28
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Hi there, Angie4567,
I was originally diagnosed with diverticulitis until symptoms came to a head : severe and constant tummy pain. I hope your tests go well as that is not easy. Diverticulitis is easier to deal with, watching one's diet helps. I am on Infliximab now ,was not keen too, but I responded badly to meds for Crohns. It worked!!! Unfortunately, I am off just now as I now require investigation for leg pain. Best wishes for a good improvement in how you feel!!
04-18-2013, 09:02 AM   #29
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What medicine's have helped you or a loved one resolve this issue of seemingly chronic diarrhea.

I've had this symptom for a few months, although I did have a couple of weeks where it went away. I have kept a food diary (w/results) but haven't really learned anything from it. I did the BRAT (Banana, Rice, Applesauce & Toast) diet for several days. That didn't seem to help. My stomach is not churning every time I eat something like it normally does during a flare. I'm only having BM 1 or 2 times a day. Everything seems fairly normal, except I have Diarrhea and gas 95% of the time. I don't think I'm having a flare. Is that just something you have to live with?

Crohnic dirrhea was one of my very first symptoms (first passed off as IBS, then Celiacs, then "dumping syndrome"), and my doctor put me on "Cholestyramine" It was made to lower cholesterol, but the side effect is that is also binds bile and helps with diarrhea. During a bad flare it does nothing, but day to day its amazing.
04-18-2013, 04:44 PM   #30
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Thank you hbrekkaas, my CRS put me on "Cholestyramine" (Questran) three weeks ago now. Like many others before me have said, it tastes like drinking sand, it's yukky, but it has kept the big "D" away. I take one scoop before bed and it makes me nauseous but I don't have diarrhea. Talked to CRS to see if this stuff came in pill form and he doesn't know of any. Asked him about help with nausea and he wants me to try Zofram.
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