# Crohn's Colitis Support Group



## Hope345

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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## Hope345

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.


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## three crows

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.


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## Hope345

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...


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## three crows

Hope345 said:


> 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!


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## loveleen garg

Hi everybody....
Tell me some good eatables for crohns?


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## Hope345

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?


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## Grouchy

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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## Hope345

> 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.


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## CrohnsChicago

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?



loveleen garg said:


> Hi everybody....
> Tell me some good eatables for crohns?


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## loveleen garg

Hi Hope345!!!

Currently i'm taking medicine and feeling relief from symptoms.


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## carrollco

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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## CrohnsChicago

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.


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## carrollco

His answer made me a little uncomfortable which is why I posted here. Thanks for the advice. I will follow through with it.


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## Grouchy

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?


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## carrollco

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. 



Grouchy said:


> 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?


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## ellie

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)


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## Honey

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!!!!


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## Hope345

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.


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## rollinstone

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.


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## Rosie Bruiser

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??


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## Hope345

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.


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## CrohnsChicago

Rosie Bruiser said:


> 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.


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## Angie4567

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!


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## Hope345

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?


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## Angie4567

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.


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## Angie4567

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!


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## Honey

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!!


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## hbrekkaas

Grouchy said:


> 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.


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## Grouchy

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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## hbrekkaas

If you're mixing it with water, try mixing it with OJ, with pulp. It hides the orange taste and the texture. So much easier to take that way.


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## rollinstone

Grouchy, just noticed your in California, have you thought about trying medical marijuana? It helps with reducing nausea and settles the stomach. Far less side effects than pills


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## Grouchy

hbrekkaas and Joshuaaa: thanks for the comments.  I picked up the zofram today and the pharmacist gave me a clue.  It may not be the Questran causing my nausea. I also take Flagyl twice a day.  I take Flagyl once in the morning and once at night, it upsets my stomach a little but I can live with it.  Then an hour or two after the last dose of Flagyl at night, I take Questran, and then immediately brush my teeth and go to bed.  The pharmacist asked if I used mouth wash and I do.  It turns out the number 2 ingredient in Scope mouthwash is alcohol?  I'm now thinking that is what triggers the nausea - Flagyl followed a couple hours later with mouthwash (alcohol).   

I've been using white grape juice with Questran but I will give the OJ with pulp a try.  I love OJ, I just quit drinking it during my last flare up but I think I can handle it now.  I'll pass on the medical marijuana for now.  I do know it helps a lot of people with pain etc. they prescribed it for my first wife (pill form) when she was in hospital with terminal cancer.


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## Darius

Hi, my husband Darius, has had Crohn's for the past 19 years. We have been married for 14 of those years. He has had a colostomy for 17 years and last year had a permant ileostomy (the entire colon and rectum was removed). He got a pressue ulcer on his heal while in hospital which still hasnt healed and has had many operations on the foot. In all of this he has ulcers around the stoma which seem to have burst and fluid is coming from them. We see the stoma sister tomorrow. I have done lots of searching about these and mostly have found that the Crohn's is probably back. We have two kids aged 10 and 7, and my biggest fear is that they will get it. The last year has been a nightmare and every little task seems enormous.


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## Hope345

Darius,
So sorry to hear all that your husband has been through.   You have come to  great forum that can give you support and information.

As a mother of a daughter with Crohns Colitis, I can understand your concern. 
Here is an article that might help:http://www.ccfa.org/assets/pdfs/WomenandibdFamily-IBD-Link.pdf

I have been doing a lot of reading and research, and in my limited experience with my daughter, I believe keeping a healthy digestive system is one important key.  I would do some research on Probiotics.    We are currently using Acidophillus for our daughter, but it is important to keep Probiotics balanced as well.    Bacteria are thought to  play a huge role in IBD.      IBD is very complicated, and no one seems to have all of the answers.    Home grown Milk Kefir has brought some great results for people as well.
I
 Hope you get all of the support and answers you need and I wish the very best for you and your family.


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## Darius

Hope345
How old was your daughter when diagnosed?


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## Darius

Hi, Darius is on methotrexate 25mg a week for the ulcers around the stoma, but the mouth ulcers have started again as well. 
Any advise?


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## Hope345

D,

My daughter was diagnosed at 13, but symptoms actually started when she was 12.

sorry to hear Darius is having the mouth sores.  Could the Methotrexate be causing the mouth sores (allergic reaction) or can they coat the mouth to help?

my heart goes out to you both.


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## CrohnsChicago

According to this methotrextate can cause inflammation in the mouth....

http://www.webmd.com/drugs/drug-344...ate+Anti-Rheumatic+Oral&source=0&pagenumber=6

HOWEVER mouth ulcers can also be a symptom of a flare.

You should contact the GI regardless and let them know of this just in case the medication your child is on needs to be readjusted.


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## Dragonfly72

Hi everyone,   I wanted to introduce myself.  I was recently dx with CD in March of this year, I was hospitalized for approx 9 days, prior to that I had my gallbladder out in Dec 2011, was told I was one of the "lucky "ones that will have chronic D the rest of my life!  For approx 2 mos after my GB Surg I was going 6-16 times per day, working 10-12hours a day as a Nurse, having to tell my patients "I had a phone call" or "I need to check with the doctor on something" all the while running to the bathroom and then rushing back to take care of them.  I was also leaving work to take care of my dad who was dx with dementia in Nov 2012, so at this point we are closing in on 1 year of the D, weight loss of 40pounds and I am 5'3 prior to my GB weight was 137. I ended up returning to the GI doc and begging her to help me.  She scheduled an uppere and lower GI series with conscious sedation, which I woke up during and felt massive pain. I begged her to stop!   Two weeks later I was sched for another colonoscopy and they put me out! (thank god) when I woke I was told I have CD!  I was shocked and at a loss for words.  Was told to get a CT scan done the following week with contrast and follow up with her after.  I drank the contrast 1 week later and had the CT done, within 10 min of completing the test I had explosive D for 2 days, I was so weak!  The results returned with 25cm of my ileum inflamed, but report stated not related to CD!   This was a typo so I was never called!!  That Sunday I was so weak and in such pain with my right side my family said enough and I called GI, they advised me to go to ER, still not giving me the results of CT.  Well i was obviously admitted and was not seen by GI for 28hours, and when I did finally see them, they were talking picc line, TPN, possible Surg if the I've steroid did not work in a day or two, nothing to eat for 4 days while in the hospital, I begged them to try and let me eat and they finally agreed and slowly introduced food~ so no PICC or TPN, once discharged I was told I needed to start remicade, 6-MP was advised by another GI in Boston that my brother took me to see.  My local GI agreed to this.  It has been 2 months of being out of work and albeit I am feeling better and my weight is up 5lbs.  I still find I am low on energy and nauseated, with minimal right side pain.   I am sorry I am making this so long.... I now have the opposite problem I am constipated and was told to take laxative twice daily with stool softener.  Nothing is working... I question if I should do liquid diet until I can go?  Don't know anyone's thoughts on this?    Also I am on steroids was quickly tapered by 10 per week per my request as I hate that I can't sleep, anxious and shaky on it, well it made me very sick(flu like symptoms) and shaking to the point I could not even write my name:-(.  So I am back to 5MG in the morning and 5MG at night.  I have my lab work checked weekly and my liver enzymes went up so my 6-mp was decreased to 25mg from 50mg.    One more quick question... Sorry... My hair is thining out.... Can this be normal on the meds?  I thinks I have heard this but wanted to see if others have experienced this.   I am scared and depressed and just thought this may be a good time to reach out!    Thank you for taking the time to read my synapse of my experience and I look forward to any who reply! I am trying to get my pic up soon so you can put a face to me.  My name is Michele


Meds
Remicade 
6-MP
Hycosamine
Prednisone 
Clonazepam
Prozac
Zofran
Vit D
Folic acid
Mirilax
Ambien cr


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## Hope345

Michele,

Welcome to the forum and sorry to hear all that you have been through.  You will find so much information and support on here...
Some people do get hair loss with IBD but I am not sure if it is from the medication or the IBD.

You have had a lot happen and you have a very busy life.  It is a lot to take in.
I hope  you can get the treatment that will work for you so you can find some relief.

Prednisone often works quickly to reduce inflammation, but it is only temporary and comes with a lot of side effects.    

My daughter takes Melatonin for sleeping and it has worked so well.  It is natural and is over the counter.   You do not need a lot, usually 3mg is plenty.   

It is good they are keeping an eye on your liver enzymes, some meds can cause problems and they do need to watch that closely.

My daughter often gets constipated as well and going from diarhhea back to not being able to go seems to a pattern for some.     It is important they check to make sure you do not have some kind of a blockage that is preventing you from passing stools however.

What foods are you  able to eat?


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## Dragonfly72

Thank you for your reply Hope,

Right now, low residue, a lot of chicken and potato's.   Today I think I am going to go on liquid diet to see if that will help, go back to ensure and broth tons of water etc~.   I have to call my GI tomorrow and due for labs on Wed.  Fingers crossed the next few days will be better!   Again, Thank you for your reply, I hope I can make some friends on here to chat with about this horrible disease!  
Many thanks,
Michele


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## Darius

You were right Darius has full blown severe CD. Back on lots of cortisone. Mouth ulcers are CD.


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## Hope345

Michele:  I hope the liquid diet provides some relief.  It can allow for some healing time and less in means less out.  Did you decide to take the stool softener?

Darius:  Sorry to hear Darius is in a flare. Have you already viewed the EIM section?  You may find some suggestions for treating mouth sores?   http://www.crohnsforum.com/forumdisplay.php?f=81              What has his doctor suggested?


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## Darius

Just. Started cortisone which is suppose to clear it all up


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## Darius

hi, Darius got a second opinion on the ulcers around the stoma and it is Pyoderma gangrenosum.
So the cortisteriods have been increased to 80mg a day, iron tablets and folic acid daily. Methotrexate still 2mg a week.
Doctor says will swell up like an ox. But as long as it helps.
Regards Sharon


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## Hope345

Sharon,
I hope it clears up soon for Darius.   I am curious why his is called Pyoderma gangrenosum.  I was just looking in the mouth sore section and did not see that. http://www.crohnsforum.com/wiki/Mouth-Ulcers.         

Some have said if you cut back on salty foods it can help with bloating.  I wish him the very best.    

Does he sleep okay at night?   Melatonin is a natural sleep aid, that is very effective for most.  Small dose is best, 20 minutes before bedtime.    Steroids can make you anxious and agitated, something like Camomile tea might help too.


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## Darius

Hi thanks no mouth ulcers crohns flare as its intetnal suppose. I just for the best at this stage. Will try the tea.


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## Hope345

Oh, I am sorry, I misunderstood.   Hopefully the steroids will stop it in its tracks.  They are good for that.   Hunger pains seem to increase with the steroids too which is not good for someone in a flare.   Maybe several small meals would be better.   
Some foods make you feel full longer: whole grain rice, beans...       

He is very blessed to have such a caring concerned wife.


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## CrohnsChicago

Hope345 said:


> Maybe several small meals would be better.
> Some foods make you feel full longer: whole grain rice, beans...


High-fiber foods are actually more commonly avoided during a flare. (whole grains, beans, broccoli, etc). You want to focus on the low residue stuff if you can tolerate. High fiber foods take a lot of work for your body to break down and consequently can add to your intestinal pain and make healing more challenging to achieve.

It is typically recommended that people stick to white breads, white rice, mashed potatoes and other low residue foods while trying to get rid of a flare. Once things clear up, then you can start to slowly re-introduce the high-fiber foods if you can tolerate them.

Yes, several small meals are usually better because your body doesn't work as hard as it would if you were to digest a larger meal.


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## JudithC

I'm very curious as to the difference between Crohns and Crohns/Colitis.    Most definitely have Crohn's and am on Remicade and Azathioprine.   But I do believe I heard Dr. say Crohns/Colitis at our last appt, and I was fairly miserable at the time so did not ask any questions.    (Increased Remi since and feeling better).


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## CrohnsChicago

Crohn's-colitis is still crohn's....however it is crohn's that is located in your colon instead of your small intestine like most people have. 

The word colitis contains the root word "colon" in it so that's why they call it crohn's-colitis. 

Types of Crohn's Disease:
http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/types-of-crohns-disease.html

The chart attached shows the difference between crohn's and ulcerative colitis and how doctors will typically diagnose you with one or the other:
http://www.crohnsforum.com/wiki/Crohns-Disease-vs-Ulcerative-Colitis


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## tots

Originally I was diagnosed with Crohn's in the illium.  Now years later it includes "left sided"
Colitis. Is this crohns colitis? 

Thx

Lauren


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## Hope345

Tots:  It sounds like your Crohns is located in the small intestines and the colon, which is  common with Crohns.    Crohns Colitis most commonly is used when you only have Crohns in the colon but sometimes can be  a way of referring specifically to  the location.


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## tots

So when I look up my specific type and symptoms which do I 
look at? 

Lauren


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## cleuger

I have Crohn's Colitis but all of my disease is on the left side of my colon they did find a very small spot of inflammation in my small intestines. I have absolutely nothing on my right side. I saw the symptoms at the beginning of this thread was for the right side does that mean they could be wrong with my diagnosis? My Diagnosis was done by colonoscopy and lower barium and lots of labs. I thought they got a pretty good birds eye view but you never know.


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## Hope345

Cleuger,  
 Each person is so different and often do not fit the typical symptoms.
My daughter is somewhere between Crohns colitis and Ulcerative Colitis.  She fits both and doesnt fit either completely.    

I added your symptom to the list, thank you.     

I hope you you are doing well.


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## Carneysh

Hi all, I was and wasn't diagnosed with Crohn's. 

I had my colon removed (all but 4 inches) and resected to my rectum in 1998 and almost had to have a bag but my bowels finally woke up and did their job. Everything was great until about 2 years ago when I started having bowel incontinence every once in awhile. I didn't worry about it because I thought I just had a bug whenever it happened.  I also have several other health issues that ended up with me being on disability.

Suddenly about 6 months ago the incontinence became an every time I got up.  I couldn't go shopping or if I did I knew I was going to lose my undies.  I refuse to wear Depends, etc.  I'd rather lose the undies! :ybiggrin:  I wasn't yet on Medicare and couldn't go to the doctors.  I finally got to go last month and he did the colonoscopy, fecal tests, blood tests, etc.  Everything _but_ the colonoscopy was normal.  He had to take several biopsies for testing from where the colon/rectum is joined (don't know the technical names) and several feet into my small intestines.  And I had several ulcerations from the join to several feet of my small intestines. The biopsies came back negative for cancer.  I go in to see him three weeks later and he said he had put my case before a conference of GI physicians because he felt I shouldn't have Crohn's when none of the tests indicated it but it was presenting as Crohns.  The foremost authority said it was Crohn's and to confirm it with the Prometheus tests.

My doctor has started me on Prednisone and wants me to do the Prometheus tests and eat a no fiber diet.  I see him again in 2 weeks.

My questions are:  
Has anyone had their colon totally removed (they only left the 4 inches so they could attach my small intestines to my rectum) and then been diagnosed with Crohn's.  Did you have incontinence and how do you deal with it? I have mild pain (because I have an extremely high tolerance to pain), bloating, gas, the incontinence, extreme fatigue, and hair loss.  But all tests show I am perfectly healthy!

Has anyone been put on a protein diet and is there anyway I can get the missing nutrients because I can't have fiber of any kind?  (A multi-vitamin won't work because they come out whole in 30 minutes).

Does anyone have the problem of passing your meals with a few hours?  My internest asked my to do a beet test (eat it and see when the purple red comes out) ... he did it at the same time ... his 2 days ... mine 1 hour 45 minutes?

I went through 9 months of total misery before they removed by colon in 1998 and now it is starting again in 2013.  I'm at the point that I'm sick and tired of being sick and tired. 

Thank you to anyone who can answer my questions.


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## Honey

Hi there,
  I am currently on Infliximab infusions for Crohns and O.K. so I cannot answer your questions, but I am sure someone else on this site will.  I did however have three very hard years, trying different meds which I reacted badly to, even having Pancreatitis!   I shed many tears.  I am sending you best wishes for a speedy recovery as I understand what a hard time you are having!!!!!   
  I hope you have had a reasonably good day.   You are in my thoughts and prayers.   Let me know how you are?:getwell::Flower::sun::Flower::sun:


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## Carneysh

Honey,
Thank you for your prayers and well wishes. I'll keep looking at the threads and reading the posts. This is only my first day on the site.

I'm doing okay and have my family supporting me. We went to an Italian restaurant about 20 minutes away, of course the minute I walked in the door when we got home it all came right back out, we had sat and visited for about 15-20 minutes. I asked my doctor if that was normal and he said it depended on the person but it could happen. No pain today lots the last couple of days. Just started the prednisone on Wednesday.  

Hope you are doing well and thank you again,
Carney


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## Hope345

Carneysh,

just sending lots of support your way too.    I hope you find the information you are needing at this time.    I am sorry to hear all that you are going through again!!
did they originally diagnose you with IBD back in 98?

Check out the surgery section and see if you can get some of your questions answered.
I wish you the best.


----------



## Carneysh

Julie,
Thank you.  I hope your daughter continues to be in remission.  Yea for her!!! :dance:

I'll continue to learn all I can so I can beat this back and continue on.  I'm glad I found this forum though (completely by accident) because a lot of people I've talked with (other than those in the medical field) don't even know what Crohn's Disease is and they really don't know what it means not to have a colon at all other than to ask 'do you have a bag?'.  It is good to read the success stories and what works/what doesn't.

I'll put your daughter in my prayers that she can continue to dance for a lifetime!!!

Regards,
Debra


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## Angie's Mom

Hi, I'm just wondering if there are many of you also suffering from arthritis. My GI is sending me to a rheumatologist for sever joint pain and I'm really nervous about it. Any one else suffering from arthritis? If so, what types of arthritis?


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## JudithC

Oh yeah!!!!!   At least your GI is listening to your complaints and trying to help you.   Mine just goes Hmmmm.    Arthritis is another auto immune disease, and seems to go hand in hand in either Crohns or the meds we're taking.    Go to the rheumy and see what he has to say.   Oh, by the way, I'm pretty sure it is rheumatoid arthritis.


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## Carneysh

Yes, I have arthritis too. Had my bilateral knee surgery in. 2010, best thing I ever did. I don't hurt there anymore. My hips and back I think I have arthritis in but I have put that on the back burner for now. I'm going back to GI in two weeks to find out if I'll have to go to a surgeon for the Crohn's.  I'm praying I won't have to but the pain level is at a 7 to 8 right now for the Crohn's 
Don't be worried about going to the rheumatologist the faster you get the pain under control the better you will feel and then you can follow an arthritis diet to help you. I found that if I stick to non-red meats the pain lessens. Mine so far is osteoarthritis.  No medicine really I just kind of live with the pain and lessen it with diet.


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## Elektrikhd

Hi- Just subscribed to this support group. Got diagnosed a little over a year ago, as a result of a flare putting me in the hospital for 19 days. Crohns, pan-colitis. Just had a colonoscopy a couple of days ago, and I'm in good shape. Still some symptoms, but for the most part it's pretty mild: I can live with it like this. I take Humira and Asacol to keep it under control, and a fistful of supplements to make up for deficiencies.

Right now I'm mostly just frustrated with being tired. I still work and do other things, but I often wind up feeling like I can't do anything for the lack of energy.

I also have had the somewhat puzzling change since the Crohn's started of my balance not being as good as it used to be. I doubt it's noticeable to anyone else, but I can feel the difference.


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## Beno

Did you have much pain in gut I was Diagnosed in 2003 and symptoms came back last year after a colonoscopy My symptoms are mild only go to toilet in morning am once! I`m on Pentasa but on 2 grms a day I was on 4 grms but made no difference.I`m being now tested for blastocytis which is like giardia. I feel very nauseas. I have not missed a day at work school teaching.


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## Desiiredestiiny23

Grouchy said:


> 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?



Apple anything usually results in diarrhea for most myself included and flares can happen and you don't have 'all the symptoms" you've had before&/that you've been told = a flare and if your just having diarrhea that could be a flare or just a virus BUT THE EARLIER YOU CATCH A FLARE THE BETTER so I would absolutely act as if it were and see doc and hope its not vs. ignore and hope it will go away, speaking from someone who's gone through it ALL Crohn's won't just get better if you try to hope and 'ignore' or in your case ill say self manage?..but it seems right now that's not working..GOOD LUCK!


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## Elektrikhd

Beno said:


> Did you have much pain in gut I was Diagnosed in 2003 and symptoms came back last year after a colonoscopy My symptoms are mild only go to toilet in morning am once! I`m on Pentasa but on 2 grms a day I was on 4 grms but made no difference.I`m being now tested for blastocytis which is like giardia. I feel very nauseas. I have not missed a day at work school teaching.


When I went to the hospital last year, I was in horrible pain...constant discomfort, and then I felt like I had knives in me the 12 times a day I was on the toilet.

After this colonoscopy I've been fine. Immediately after I was a little bloated, but that was from the air they pumped in during the procedure.

I'm a teacher myself, but I have missed some time over the last year...more often due to migraines, although they seem to be a side-effect of the Humira.


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## Angie's Mom

Hi all, I'm just wondering if any of you are suffering from hairloss. It started falling out in May when I was on prednisone and Imuran. The thinking from my GI doctors was that it was probably the prednisone. 

I started taking remicade in July. Beginning on August I finished with the prednisone. My hair continued to fall out. By the end of August I went off of the Imuran (which I read can cause hairloss) here I am nearing the end of October and my hair is still falling out. I've lost over 3/4 of my hair.

I just found out that my vitamin D level is still in the toilet (I'm at a 19 and low normal is 75) my family doc doesn't feel this is a factor in the hairloss but rather is a byproduct of disease and illness.

Anyone with similar issues???


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## Khaya

Hi guys, I'm new to the forum and have been recently diagnosed with crohn's after believing I had IBS for the past six years. I have been quite poorly over the last nine weeks and wasn't listened too by my G.P which resulted in a ten day stint in hospital. 

Im in need of advice I have just been prescribed azathioprine yesturday and feel quite worried to start taking it after learning about the side effects. My consultant gave me  two options surgery to remove part of my bowl or azathioprine for at least five years 150mg, so I chose the medication route.. but now I dont know if its best to have surgery.. any advice will be appreciated and if anyone can give me pros and cons of both options would be a great help.
Thank you
Khaya xx


----------



## Khaya

Hi guys, I'm new to the forum and have been recently diagnosed with crohn's after believing I had IBS for the past six years. I have been quite poorly over the last nine weeks and wasn't listened too by my G.P which resulted in a ten day stint in hospital. 

Im in need of advice I have just been prescribed azathioprine yesturday and feel quite worried to start taking it after learning about the side effects. My consultant gave me  two options surgery to remove part of my bowl or azathioprine for at least five years 150mg, so I chose the medication route.. but now I dont know if its best to have surgery.. any advice will be appreciated and if anyone can give me pros and cons of both options would be a great help.
Thank you
Khaya xx


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## ronroush7

I would like yo subscribe to the Support group.


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## CheerBear12

Hair loss will be caused by medication it happened to me for 5 months after but I had surgery as well and got really really stressed. But don't worry it does grow back. Mine growing back but still really thin but better than it was. Lost loads you could actually see bald patches hoping it stops real soon for you. Are you still on medication how is your flare up now? Probs to do with your vitamin d levels as well


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## ronroush7

I have to take synthroid because of problems with my thyroid and it causes hair loss.  My other current medications are pentasa, Imuran, Remicade, Colestid and ditropan.  My supplements are Ferrofood and Empower.

 2


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## CheerBear12

How long you on synthroid for? I'm hoping it'll stop when you stop it . Not sure whether pentasa or infliximab causes it as well. I was on both with the really strong steroids


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## ronroush7

It has probably a year that I have been on it if not more.  Right now, my hair is super short.


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## CheerBear12

Aw that sucks  hope you feel better soon. That's probs best idea with it still falling out  mine still really thin nearly 2 yrs after op next month (it saved my life) my hair is long as well so as getting longer it  looks even thinner


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## ronroush7

I have probably been on synthroid for a year.  Best to all.

 2


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## ronroush7

Sometimes, I get pain in the fleshy part of my right hand and wonder if it is arthritis.


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## Hope345

I was wondering if any of you have been told you might have UC?   My daughters doctors are going back and forth.   I thought one of the deciding factors is when you have patches of inflammation, rather than continuous inflammation?    
I think it is uncommon to have Crohns only in the colon and rectal area and they are confused.   
any input regarding Crohns Colitis and ulcerative colitis would be appreciated 
thank you


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## Jessie's mom

Hi I am mom to a 17 year old handicapped child,2006 diagnosed with colitis, she doesn't have the many bathroom trips but after colonoscopy which we do to maintain her colitis because she don't tell us of pain,her genetic condition she has extremely hight pain threshold.well we had endoscope and colonoscopy in march of this year and the. A endoscope in march, dr decided. To take her off the 6mp because she was seeing more and more ulcers and treat her with remicade.so  in August we stop 6mp by sept 5 she was flaring which has not happened since first diagnoised spent a week in hospital where they did first remicade,came home on steroids and finished them on nov 1. Well nov 20 we started with softer and softer stools by the 29 we were flaring again so we have been in hospital since.she had three remicade treatments, now she had a pic line put in she is getting cipro,flagyl, steroids, Iv fluids,nutrients,tnp!!! Now the dr said lets put her back on 6 mp!! I thought we took her off because she needed to be treated more aggressively ??? No more remicade.we were also approach by pediatric surgeon and he gave us a option of surgery she was scoped last Friday and her whole colon it total colitis!! He is offering to do j pouch surgery,anyone familiar with this,any insight I could get would help so much we are so torn what to do give the meds another chance or do the jpouch


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## carrollco

Crohn's colitis: I was diagnosed with UC directly after colonoscopy. One week later my doc called and said biopsies confirmed Crohn's instead of UC. My daughter is diagnosed with UC but my doc says she probably has Crohn's and Kaiser misdiagnosed. *shrugs shoulders* Then my son was diagnosed with ulcers at the terminal illium but that doc said it was ibuprofen induced. Sometimes I wonder if any of them know what they are doing.

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.


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## Hope345

Jessies mom:  I hope you have had a chance to do some research on here.   I have not dealt with the pouch. Would it be permanent or for a short period of time?  

Carrollco:  I sure wish all GI doctors would get on this site. I think it would give them an in-site and allow them to research more options for their patients.

We are currently getting ready to do the anti-m.a.p. treatment for our daughter.  It includes 3 antibiotics and works with the theory that Crohns, UC (IBD) is from a bacteria.  It has proven to be 80% effective.   Here is some info showing that the U.S. is working towards an FDA approval on it.  
http://globenewswire.com/news-relea...-in-Independent-Pediatric-Crohn-s-Study.html?

I wish you both the very best. Keep us informed and ask lots of questions. We are here to help.


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## Clash

Jessie's mom, my son has crohn's located mainly in his terminal ileum, there was some inflammation in the colon and some located in the perianal area. 

I'm going to tag some parents into this thread, even though your daughter has Crohn's colitis, I don't think a j pouch is generally considered for Crohns due to high failure rate or something. I'm going to tag Dusty, My Little Penguin and possibly Aussie as they possibly give you more information.


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## DustyKat

Thanks Clash.  

Hey Jessie’s mom…:ghug:

I assume by Colitis it is Ulcerative Colitis? My two have Ileal Crohn’s so I have no experience with pouch surgery, sorry.  

QueenGothel's young lass has had j pouch surgery, she is now tagged into this, and if you ask the question in the surgery or Ulcerative Colitis forum you are bound to get answers there. Also use the search function using j pouch and it will pull up any relevant threads. 

Good luck mum. :heart:

Dusty. xxx


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## Clash

Ahh...sorry Dusty I just noticed the thread being Crohn's Colitis it didn't dawn on me that Jessie's mom may be talking about ulcerative colitis.


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## QueenGothel

Best picture and info online are at jpouch.org. I also run a parents of kids with a jpouch group on FB we have wll over 70 members now.  

www.facebook.com/groups/ParentofJPouchers

There is a lot of support on FB.  Sorry your DD is having such a rough time.  J pouch surgery works great for some and not so great for others.  Most important part is having a great surgeon.  They are not very common amongst pediatric doctors.


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## atteberyc

Hello there...i have been diagnosed with Crohn's Colitis ( just a few days ago) someone said that didnt mean i had Crohn's disease and UC, but that I have Crohn's in my large intestine...this whole situation confuses me so badly!! 

So with this diagnoses i have Crohn's disease and it is located in my large intestine? Does anyone else have this same diagnoses? How is it different from just plain old Crohn's disease?


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## carrollco

I have Crohn's colitis and was told by my doc that it was called that because that is where my ulcers were on colonoscopy. Now I have peri-anal Crohn's along with ileitis, which is inflammation in the small intestine and rectum along with a bunch if other itis' in the stomach region. So, I think it is a phrase that says you have Crohn's in the colon. But that doesn't mean it won't move around like mine did. I just started remicade yesterday after Humira quit on me.


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## Rose

Carrollco,

Please keep us posted on how Remicade works for you. That is the next option for my 16 year old son diagnosed with crohn's colitis in April 2013. We have been unable to get him in remission for longer than couple months, since he was diagnosed. He is currently on for first time Prednisone (started last week), Methotrexate (6weeks) and added Apriso Monday (even though Asacol HD and Canasa did not help previously, doc still wanted to try Apriso with different release). He still has diarrhea, cant remember last time he had a normal stool, but thank God no blood!!!! Bleeding is the manin issue. He is anemic and Hemoglobin drops super fast. I noticed today he went to bathroom 4 times... and I am nervous because when he was better he only went once/twice a day. Just changed doctors. Lots of top doctor plaques on his wall but how do you truly know who is right and who is wrong when there are so many different approaches to treating the disease. How long did Humira work for you.


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## carrollco

I will keep you informed. It was a hard decision to make, but when the Crohn's moved into my rectum with fissures etc., I couldn't take the pain and had no choice. I haven't had a normal bowel movement in almost ten years. If I have one, I will be shocked.


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## atteberyc

Hello Group! 

I have had eventful couple of weeks. i had a colonoscpy on monday Jan13th, and was diagnosed with Crohn's disease...i was then admitted in to the hospital from the ER on friday Jan 17th, with extreme abdominal pain, passing alot of blood, dehydration...i was relesaed on tuesday night. They did a CT scan of my intsines and said they were inflamed and infected, they kept me on antibotics and steriods and pain meds the whole time i was there. Now i'm out of the hospital and my biggest problem is my anxiety. Since the hospital i have had to take at least one xanax a day to keep the panic attacks away. Now that they have my stomach under control(somewhat) i'm sticking to white carbs and lean meats...it is so nice not to have to go to the bathroom after every bite of food! 

Question: Did anyone else have such severe problems after just being diagnosed? It just all kinda happened at once ( i think thats why my anxiety is out of control)

Cassidy Attebery
Crohn's Colitis
meds: Lialda, Xanax(since hospital visit), Celexa (anxiety meds), Prednisone


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## long time crohnie

Hi everyone! I need some feedback please! I have Crohn's, for 25yrs, and have been in remission for the most part of 13 yrs. Unfortunately I had a flare this past fall and was on prednisone for 4 mos. My problem is chronic diarrhea. I haven't had a normal bowel movement in years and I've tried everything!! Any suggestions?


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## ronroush7

I wish I had some answers for you.  I will pray for you.


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## Dragonfly72

Long time crohnie, I am sorry you are suffering, can you ask your GI if you can add some fiber, like benefiber, it is a powder and you can mix it with drink or food, may help to bulk up your stools, also please make sure you are having enough to drink, you don't want to get dehydrated!

I would call and see what they say about the benefiber (?sp). That did help me some!  
Keep us posted.

Michele xo


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## long time crohnie

Thank you for your suggestion re fiber, but fiber and I do not get along. I've tried it before and I get bloated w tons of gas, and then more D.  The only thing that ever controlled it was being on narcotic pain meds. Got off all those a year and a half ago and really don't want to go back to that. My GI has mentioned the possibility of taking codine, but he as well as I agree thats our last resort. That's why I asked you all, we are the experts, and I can always find new and different ideas on this site. Please continue to weigh in, it does help!!


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## long time crohnie

Spoke w my GI doc today that gave a couple options, taking enticort or lotronox(very expensive). My regular doc suggested a small amount of subutex. Unsure about any of it :yrolleyes:


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## mama21princess

In May of last year, after my first colonoscopy, I was diagnosed with UC. I had another colonoscopy at the end of November, and had a follow-up appointment with my gastroenterologist yesterday. He told me that based on the biopsies, I have Crohn's colitis. For right now, he is doubling my dose of Lialda, and if that doesn't help the inflammation, I will have to start 6mp. I hate this.


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## ronroush7

I am sorry.  I wish you the best.


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## JudithC

HI little MAMA....I have crohns colitis......life goes on somehow.  Keep your chin up and take your meds.  I am on remicade and it took a while to work, then it worked, now not so much, but I'm seeing GI next week and we'll discuss next options.   It does get a bit much sometimes, so I do understand what you're feeling, but this forum is amazingly helpful, so just keep coming back.   We're here for you.


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## CMT

*New to your group*

Hi all, new to this group. . I thought having the combo of Crohn's /colitis was unique to me. :smile:  look forward to learning more from all of you and sharing too.


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## ronroush7

Welcome, CMT

 2


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## mama21princess

Thank you for all the support everyone. It is so good to have a place like this to come to.


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## mummy2gastricboy

My little boy is 3 years old. Hes been ill for some time now.
Hes had severe reflux amd failure to thrive and lots of different food aversions.
Hes got a gastrostomy to feed him as he doesnt eat.
Hes had meningitis and blood poisoning in the past.
Now for nearly a year now hes been bleeding on the inside (coffee ground, fresh blood and orangey blood) he also has black hard specs of blood from uper gastri bleeding for a while bow ( on and off) he suffers fromchronicconstipationtoo hes on meds and he goes nearly every 4 days.

This keeps happening. His gastric dr has done a scope but when the bleeding stopped so obviously they couldn't tell where the bleed was. He has had half a colonoscopy (no bowel prep so they couldn't see anything)
hes had the whole fresh blood mixed with mucus in poo too.
He gets ulcers in his mouth and a lot of pain in there too.
He goes through phases where hes really tired and doesnt do much but no temp or anything. He also gets really bad tummy ache. Hes currently on mevberine for it. His gastric dr keeps dismissing all his problems.

Can anyone shed some light please

an I join please?  I have posted this as threas and then I saw this!


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## JudithC

Hello Mummy, of course you can join.    We're so sorry to learn of your son's difficulties.   My very first thought was that you should most definitely change gastric Doctors.  I can't imagine how your poor little boy must feel and you also as his caring mother.  Perhaps other parents may chime in here to give you some support.   I'm the one with crohns and I'm one of the older sufferers of this disease.    Sending healing thoughts and prayers.


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## mummy2gastricboy

Thank you judith. 
Hes such a sweet happy little boy and because hes soo happy he confuses everyone.  Even when he tells you he has pain. 
The dr who put his gastrostomy in will only see him if gp does referral again which je wont as ds already costs him too much. He was transferred to the children's hospital closer aas we were originally travelling 3hours to see the 1st dr. The dr who he now sees is pretty useless.  Ive taken him to accident and emergency here too so we could see another gastric dr. But as he is already under a specialist nobody else would do much apart from start him on the mevberine. 

I do hope (in the nicest way possible) that someone has had similar experience so we have a guide to work from.


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## mama21princess

Ever since I saw my doctor and he increased my dose of Lialda two weeks ago, I have been feeling worse and worse. Diarrhea, pain, nausea. I called his office and left a message for the nurse last Thursday, but didn't hear back. So, I called again yesterday and left another message. I got a call back that the doctor has been out of the office since last Wednesday, so I could either talk to my PCP or go to ER. Well, my PCP doesn't want to give me anything, and I am not going to ER. My gastro is not really helpful at all. My PCP is referring me to another gastro for a second opinion, but of course they don't have any openings until April 29th.


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## CrohnsChicago

Good idea getting a new referral for a GI. It takes a while to get appointments with them. Maybe call in and ask to be put on the callback list if a patient cancels and an appointment opened up.

It would be in your best interest in the meantime to visit the ER if your symptoms to not improve or get worse to avoid any complications from medication.

But I also want to point out that you should not suddenly stop medication without first consulting a medical professional. 

Feel better soon


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## Angie's Mom

mama21princess said:


> Ever since I saw my doctor and he increased my dose of Lialda two weeks ago, I have been feeling worse and worse. Diarrhea, pain, nausea. I called his office and left a message for the nurse last Thursday, but didn't hear back. So, I called again yesterday and left another message. I got a call back that the doctor has been out of the office since last Wednesday, so I could either talk to my PCP or go to ER. Well, my PCP doesn't want to give me anything, and I am not going to ER. My gastro is not really helpful at all. My PCP is referring me to another gastro for a second opinion, but of course they don't have any openings until April 29th.


My gosh, it's like listening to my own story!! I know how frustrated you are! I've been flaring for 1.5 years now an I can't get my current GI on the phone to save my life! My Rhumatologist made me a referral for a second opinion after she found a tumor in my colon that my current GI has yet to address. Unfortunately I have to wait until May 26th for my appointment! I hope all goes well for you.
Best of health to you.


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## carrollco

Remicade is my miracle drug. One week after my 2nd infusion I had my first normal bm in over 10 years. I am now testing foods and so far so good though my diet is still SCD legal. I did sneak a tablespoon of ice cream and had no problem. I don't eat wheat and do not plan to so I can't report on that. Believe it or not I only have a bm every 3rd day. Kinda freaked me out at first but you would be amazed how quickly you revert to normal. My next infusion is 2 weeks from now then we'll try every 8 weeks. I am having some abdominal pain today. A burning sensation that is uncomfortable. That just started today so I will see how it goes.


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## CAS

I am new to this forum or any forum so I am happy to have found it.  Reading some of the posts I have decided that I have it rather easy compared to some of you (sorry to say that).  In saying that I have been debating on going to the Mayo Clinic because I am not "sold" that my doctor is doing anything to help me.  I have been having pains along my left rib cage that goes around to my back for a couple of months and my doctor hasn't given me any suggestions to fix the situation.  

It happens with almost anything that I eat (almost 2-3 hours after eating).  Exercise seems to help but not all the time.  I can't sleep through the night and my energy level has been declining.  Does anybody have any suggestions?


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## mama21princess

I finally got a call from the nurse at the GI's office late yesterday afternoon. He wants me to stop the Lialda, and start prednisone. 40 mg for two weeks, then taper 10 mg every week. I hate prednisone. I haven't taken it yet for IBD, but I used to have to take it for my asthma. It gives me such bad heartburn. 

CrohnsChicago- I am on the cancellation list, so hopefully something will open up a little sooner.

Angie's Mom-I'm sorry you are having so much trouble with your GI. May 26th? Wow! I guess I should be thankful for an April appointment!


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## sr877378

Hi guys! Name is Sara, 22 from Canada, just diagnosed with CC about three weeks ago, been dealing with symptoms about 7 months, flare up for about 5 months. Been on Flagyl at xmas and now on 6 Mezavant for 2 weeks. I have about a 2 week window (when my midterm exams end) to experiment and try to start healing before my doctor puts me on prednisone. Trying EVERYTHING I can to avoid it! So far on day 10 of SCD diet (mixed reuslts- belly pain and cramps and nausea are next to none now, D about 2x in morning and then very small unhealthy BM couple-few times tapering through day, still passing mucous. but overall BM less frequent) but i wonder if the bit of improvement from the diet is only due to eating such a small amount. Afraid if i increased to normal intake I would be back at square one. Making Rick Simpson oil this weekend as a last shot in the dark! Has anyone tried this or know someone who has? Or anyone experience/success with mezavant or tips for SCD? Glad to have joined your group, rock on guys!


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## long time crohnie

Welcome to the Forum Sara! I have found this site to have been a life saver at times! It really helps in so many ways. Be sure you check out all the support groups and gather as much info as you can. Not sure I know what a SCD diet is. We have different jargon here in the US. I think your 6 Mezavant is our 6 MP, and if so, that drug can take longer to work which is most likely why your doc may want you on prednisone to help relieve symptoms faster. I know pred sucks but it works. Hope you feel better soon!!


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## norcalcrohnie

Hello fairly new poster here and I have Crohn's Colitis which is affecting the colon. The last colonoscopy I had at the end of December showed inflammation in the colon but my GI said my Intestines looked good at least. I have been on every possible medicine and now trying Stelara to see if it helps me any. If that does not work I am basically out of options.


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## Hope345

My daughter was diagnosed with Crohns colitis 2 years ago because she was inflamed in three sep areas in the colon.   The last colonoscopy showed only inflammation in the rectum so they rediagnosed her with probable U.C....             have any of you had the same thing happen?


----------



## Angie's Mom

Hope345 said:


> My daughter was diagnosed with Crohns colitis 2 years ago because she was inflamed in three sep areas in the colon.   The last colonoscopy showed only inflammation in the rectum so they rediagnosed her with probable U.C....             have any of you had the same thing happen?


I just had the opposite thing. I've had UC for the last three years with primary disease in the rectum and sigmoid colon. I had a colonoscopy on Wednesday and my condition was changed to Crohns Colitis. I have to wait to see my doctor until after my biopsies come back and I currently have no idea what Crohn's colitis is!
I'm learning that its not about original misdiagnosis, but rather disease progression. Best of luck to your daughter, hopefully they are able to sort everything out for her!


----------



## Hope345

thank you, you too.


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## mama21princess

So, I've been on 40 mg of prednisone for almost two weeks now. The diarrhea is better, but I am still having so much abdominal pain and cramping. Do you think the prednisone will start to help with the pain? I am so tired of hurting.


----------



## CrohnsChicago

mama21princess you need to let your doctor know that you are still experiencing abdominal pain and cramping. Does the pain seem to have at least gotten a little better or worse since starting prednisone? 

Also, is this your first time on prednisone? The more times you have to go on it, the different the effects can be on people. It does take time to hela, but after two weeks at 40mg it's more likely that you should be seeing some significant relief of crohn's symptoms in spite of medication side effects. 



mama21princess said:


> So, I've been on 40 mg of prednisone for almost two weeks now. The diarrhea is better, but I am still having so much abdominal pain and cramping. Do you think the prednisone will start to help with the pain? I am so tired of hurting.


----------



## long time crohnie

Mama21: So sorry to hear you're still in pain! Did you have tests that showed  any narrowing or just inflammation? Reason I asked is because I never got pain relief from prednisone when I had a lot of narrowing. If I did it was after a good month of being on it. Let your doc know you are still experiencing pain. Maybe you can get some pain meds to get you through till the pain subsides. I wish you luck 

A question for any of those who have been prescribed Lialda, I have a friend who has recently been diagnosed w colitis, completely out of the blue too. Never had any symptoms until 2-3 wks ago. Shes very active in sports and was very healthy. Her colonoscopy showed ulcers and bleeding in her colon. She was experiencing blood in her stool and severe cramping and D. Her doc put her on Lialda, which I had never heard of, and within a week she ended up w severe, debilitating pain in her lower back and butt. Sounds like it was sciatica. She was eventually hospitalized, taken off Lialda and given a cortisone shot in her hip. She got better, and was put on prednisone. Back to my question: Has anyone ever had these problems with a flare of colitis?  Docs think they may be related re inflammation or a possible side effect of Lialda. Just unusual and was extremely painful to see her in that kind of pain.   Feedback please.


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## mama21princess

This is my first time on prednisone for IBD. I've been on it a lot of times before for asthma, but that was usually only for a week at a time. There have been times the last couple of days when it has been a little better. It is pretty bad right now, though. My GI has never said anything about narrowing, but he doesn't say much at all anyway.


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## long time crohnie

mama21princess said:


> This is my first time on prednisone for IBD. I've been on it a lot of times before for asthma, but that was usually only for a week at a time. There have been times the last couple of days when it has been a little better. It is pretty bad right now, though. My GI has never said anything about narrowing, but he doesn't say much at all anyway.


You need to be your biggest advocate w this or any disease. If your doc isn't telling you much, then you have to ask. Push him if need be, call a lot and speak to anyone over there that will listen. What I learned the most after all these years, you  MUST educate yourself re crohn's and to not let the docs tell you how you SHOULD feel if your not! If you are still in a lot of pain, tell him and that you would like him to do something about it, and if he won't, then ask him to tell you who will. This illness is so vague that we need to be specific. Please stick up for yourself and tell your docs what YOU need. Praying for you!!


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## JudithC

long time Chrohnie,  you're so very right.   But why do I feel guilty every time I leave the Dr. office?    Last time I went in with a list, so I would not forget to tell him things, and he looked at it like it was poison.   5 items on the list, just FIVE!


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## long time crohnie

JudithC said:


> long time Chrohnie,  you're so very right.   But why do I feel guilty every time I leave the Dr. office?    Last time I went in with a list, so I would not forget to tell him things, and he looked at it like it was poison.   5 items on the list, just FIVE!


Wow!! I know good docs are hard to find and everyone likes different things in their docs. I personally need an empathetic doc who will take time w me and not look at me like I'm crazy. I had THE PERFECT gi doc when I was first diagnosed. He was a leader in the field and well respected and liked by other docs. Unfortunately, he retired. I took me two different docs till I found one who would work with me. A lot of docs get intimidated by those who ask questions and know their bodies well. I don't like those. I like those who are impressed w my knowledge and work as a team.


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## mama21princess

When I've talked to him about my pain before, I've gotten the feeling that he thinks I'm being a baby about it. My last appointment, I did ask him a question, and it felt like I was inconveniencing him.


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## Jajabinks

Anyone else have Ankylosing Spondylitis?  seems this is worse than my Crohns now. I'm very scared...


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## Angie's Mom

Jajabinks said:


> Anyone else have Ankylosing Spondylitis?  seems this is worse than my Crohns now. I'm very scared...


Hi, I just had an MRI on Saturday to look at my spine especially my si joints. They are thinking there is a good chance it's arthritis. I have to wait another 2 weeks to find anything out. I find the pain unbearable.

What are your doctors saying to you in terms of treating the ankylosing spondylitis?


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## Jajabinks

I'm heading to the doctor now. I will let you know. I'm asking for the gene blood test today.


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## Jajabinks

The pain is horrible.  my butt bones, tailbone, thighs hurt. I also get eye inflammation n chest pain. I now know when my back is flaring n when it's my Crohns. Two different flares to deal with....great! Sighs...there's a chance it won't show on imaging yet if you just recently got the symptoms so don't let the docs dismiss you.


----------



## Angie's Mom

Jajabinks said:


> The pain is horrible.  my butt bones, tailbone, thighs hurt. I also get eye inflammation n chest pain. I now know when my back is flaring n when it's my Crohns. Two different flares to deal with....great! Sighs...there's a chance it won't show on imaging yet if you just recently got the symptoms so don't let the docs dismiss you.


Thanks, my Rhumatologist is fantastic, she has sent me for every test imaginable. Even when they come back negative she just sends me for more tests! My GI on the other hand just buries his head in the sand, if it isn't directly related to my GI tract he couldn't care less.

Let me know what your doc says about your treatment. Best of luck to you.


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## Jajabinks

Angie I have been complaining for months about my tailbone/butt cheek pain, the doctor acted as if I did not even say anything, didn't even make a suggestion. Had it not been for support groups and the internet, I would be so lost.  My GI didn't give a darn either about my complaints.  I will let you know as soon as I see the rheumy. I am so nervous and depressed.  Two diseases...sighs...


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## keuka17

Hi. Does anyone else have involvement of the biliary system with their Crohn's? I have involvement at the ileum which has been my usual area but now am having biliary issues too and my GI is certain that it's my Crohn's.


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## three crows

Hi Keuka,
I haven't, but I hope some one else will come along soon that might have some information for you.


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## mummy2gastricboy

Can I ask a quick question 
lo is undiagnosed and hoping to get a diagnosis soon.
his stool looks like theres 'fibres' in them? Like hes been eating weetabix of something.  Rather grainy andvery watery im gguessing its overflow as he suffers from chronic constipation.  
Any ideas? Thank you


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## Jackie Aba

New to this group but have been reading threads and seeing my same
problems.  I ended up with crohns/colitis late in life and have been with it
for about 8 years.  Right now my only medications are 2 1/2 mg. of prednisone
daily and occasional use of Cortifoam.  While my gastro dr. doesn't believe
in it, I've been taking LDN for a number of years. My GP agrees to writing my prescription. It certainly has not been a cure, but despite never really getting into a remission, I put up with symptoms and remain fairly healthy.  Diarrhea,  
big time gas, and bloating have been the worst culprits, but now there are some days when I actually am constipated....that is a new twist.  I follow some
of the SCD diet but find I must avoid dairy, most raw veggies, and I stay
gluten free.  I use lots of almond flour for baking breads, cookies, etc.

Glad to share with others...........


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## Hope345

Has anyone been tested for food allergies?
My oldest daughter diagnosed with IBS has been suffering for 2 years and we just found out she is very allergic to dairy products (not lactose intorelant), almonds, egg whites,  and allergic to wheat gluten.     My daughter with either Crohns Colitis/U.C. has to wait until she is off meds to get an accurate result.  I am so hopeful that a food may be triggering her inflammation.     She is also seeing a Naturalpath today and we are hoping she can offer some input.     

I am not completely against the Remicade/Imuran and Mesalamine but they dont target the colon as well.  (however she is using the mesalamine enemas).       It has been a blessing to get her off the Remicade because it wasnt working very well.   It did eliminate the inflammation she had in 2 other spots of her colon and now it is strictly in the rectal area.      

Please let me know if any of you have been tested for food allergies and if eliminating those foods eliminated inflammation.   thank you


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## mama21princess

I was tested for food allergies, but they all came back negative.


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## Bonzo 4

Long time crohnie  I was given lialda too . Let me tell you severe frequent back aches , and chest pains that medicine sucks!!! Asacol same thing . I stopped my meds.


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## mixiestar

I was not tested for food allergies but at the suggestion of my nutritionist at Vandy I cut out all lactose and started drinking the 99% lactose free Kefir. Kefir is GREAT. I can only eat in the afternoon most days and the Kefir helps me have something in my stomach in the morning to take my meds with. I still get nausea, though now it is not every single day. I drink Lactose-free milk and I got some fabulous lactose-free cheese (after trying several nasty ones). I recommend anyone try it if they are having problems, give it a few weeks and see if it doesn't help a little. Every little bit helps.


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## malmer7

Hi All, one comment and then a question:

First, I just read this entire thread and wanted to clear something up.  Crohn's colitis is NOT Crohn's AND Ulcerative Colitis...  It's Crohn's disease of the Colon only.  Treatment is the same as UC, the difference comes when surgical options are slightly different.

Piggybacking on that, does anyone know if Crohn's colitis can ever spread to the small intestine?  I've already failed remicade and so I'll start the new drug Entyvio next week.  If that fails I have seriously consider removal of my colon, rectum and anus (due to fissures).  I would hate to go through a surgery like that only to have Crohn's spread to my small intestine later you know?

Any feedback is appreciated.  Btw - I was originally diagnosed UC but changed to Crohn's colitis after visiting Stanford Medical Center.  Symptoms that changed my dx were mouth and nose ulcers, bad anal fissure, and the "look" of my colon ulcerations according to the Stanford GI.  I've actually had the Prometheus bloodwork done that "confirmed" UC but Stanford says it can't discern between UC and C-C. Hope that info helps others.


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## Elektrikhd

I can't offer much, except to say that my first colonoscopy in the hospital had the GI doc thinking Ulcerative Colitis, based on what he saw inside. Everything was inflamed, and there was ulceration. But, biopsies and stuff were inconclusive, so he he went to "unsure" on the exact disease. Had a flexible sigmoidoscopy later, and what he saw that time was a little different, looked a little more Crohn's like, but again the biopsies were inconclusive. He updated his diagnosis to "probably Crohn's," and it was later confirmed by the Prometheus test. Although it was never brought up, I do have a history of mouth ulcers...not bad ones, but I always wondered where they came from, and only after the Crohn's diagnosis and reading up on it did I realize that it might be connected. (And actually since starting Humira, I don't think I've had a single one.)


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## Jim Gonsler

I've been suffering from the effects of crohn's for 40 years now but mostly from the results of the surgery I had in 1971.  Sections of my ileum, small bowel and several feet of diseased intestines was taken out.  As result, by bathroom habits changed drastically.  I have BMs 5 or more times a day and I need B-12 shots monthly.  Fortunately I haven't suffered the severe cramps I once did when I suffered in my teens.  In the past few years though I've had some issues with my urinary tract.  I've been experiencing pressure and some pain when urinating and I can't just urinate without a BM as well.  Upon my last visit to the urologist and given and exam he told me my bladder looked pretty bad.
I've had problems with kidney stones over the years too.  I've been reading that crohn's can effect the bladder and prostate as well.  I'm wondering if that is true.  And if so, how many people are experiencing this crohn's side effect as well?


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## Elektrikhd

I've sometimes had urination set off a BM, mainly during a flare. This summer I thought I had a UTI, but the urine sample came up negative. Symptoms cleared up. Something occasionally seems a little 'off' but I can't quite place it. I'm having a flare right now and noticing that sometimes I have to sortof 'push' to empty my bladder doing a BM. Is this similar?


----------



## Jim Gonsler

I don't know if you got my last reply.  If not, this may be repetitive, sorry.  Yes, I do have the same "push" to empty my bladder during a BM.  The good thing is though that I now can empty my bladder completely.  I'm taking a herbal supplement that has helped a lot, better than the prescriptions I was taking even.  But the problem has not gone away.  I've read that you can have fistulas in the bladder, like in the bowel region.  I know the crohn's has been partly responsible for the several kidney stones I've produced over the years.  Man this is frustrating!


----------



## Pilgrim

malmer7 said:


> Hi All, one comment and then a question:
> 
> First, I just read this entire thread and wanted to clear something up.  Crohn's colitis is NOT Crohn's AND Ulcerative Colitis...  It's Crohn's disease of the Colon only.  Treatment is the same as UC, the difference comes when surgical options are slightly different.
> 
> Piggybacking on that, does anyone know if Crohn's colitis can ever spread to the small intestine?  I've already failed remicade and so I'll start the new drug Entyvio next week.  If that fails I have seriously consider removal of my colon, rectum and anus (due to fissures).  I would hate to go through a surgery like that only to have Crohn's spread to my small intestine later you know?
> 
> Any feedback is appreciated.  Btw - I was originally diagnosed UC but changed to Crohn's colitis after visiting Stanford Medical Center.  Symptoms that changed my dx were mouth and nose ulcers, bad anal fissure, and the "look" of my colon ulcerations according to the Stanford GI.  I've actually had the Prometheus bloodwork done that "confirmed" UC but Stanford says it can't discern between UC and C-C. Hope that info helps others.


My daughter has Crohn's limited (at this time) to her colon. Crohn's colitis. Before the path report that found the granulomas in her biopsy samples, she was given sulfasalazine while we waited. Once the doctor got the report he told me we could just throw away the sulfasalazine, because she has Crohn's and not UC. So, I think the treatment options are different for the different diseases. She ended up on exclusive enteral nutrition and now Aza.

I also understand that if you have Crohn's and have a surgical removal of your colon, it could put you into remission but is no guarantee that you won't have the disease reappear in a separate section of your GI tract.

Did you end up having to make a decision about surgery?


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## ronroush7

In a note to my gp, my gi said I have pancolitis.  Wikipedia says that means I have Colitis but the rest of the colonoscopy disputes this.  I am confused.,

 2


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## Pilgrim

Colitis is more of a generic term. It doesn't mean "Ulcerative Colitis" necessarily. It could mean inflammation of a variety of sorts. Maybe UC, maybe Crohn's, maybe even caused by an allergy, etc....

Pancolitis means that your disease is spread throughout your colon, and not limited to one area of the colon. What it doesn't describe is how deep the inflammation goes. 

I was really confused about that at first. I hope that helps.


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## ronroush7

Thanks.

 2


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## Hope345

UC and the need to urinate.   
We have found that if my daughters increase their water intake, the feeling goes away.  It has been a big issue for a long time, so this was such a blessing to solve.


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## ronroush7

I just found out recently that the Crohn's has moved into my colon.

 2


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## ronroush7

Anyone else with Crohn's Colitis have back problems?

 2


----------



## cleuger

Yep I do I have really bad back pain sometimes not sure what it is.


----------



## Elektrikhd

I'm having aches and pains everywhere, but, oddly enough, not having any GI symptoms. Also having fatigue and a laundry list of other things.


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## ronroush7

cleuger said:


> Yep I do I have really bad back pain sometimes not sure what it is.


Not sure but it could be your colon.

 2


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## Jackie Aba

Sometimes I get back pain also.  Maybe it has something to do with all
the internal pressure caused by gas.......a great part of this fun illness.


----------



## ronroush7

My lower back does some twitching or spasms.  Does anyone else have that happen?

 2


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## ronroush7

Getting ready to go to Johns Hopkins once I have an appointment.

 2


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## Ali29

I have gotten the twitching/spasms - I thought it was the Prednisone - GI said that could be the cause.  Lasted about 2 weeks, then gone.


----------



## AnimalLover

Angie4567 said:


> 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!



I have horrible acid reflux. None of the over the counter drugs have worked so I tried apple cider vinegar. I started out 3 times a day and after about 2 weeks my symptoms were pretty much gone. When it does start to act up again I start back up on the apple cider vinegar and they go away. I haven't taken any pills for about 4 months now. Worth a try :ysmile:


----------



## grahamburgers

Hello fellow Crohnies! (Can we call ourselves that? ....no? )

I have back pain sometimes but I also have scoliosis so that contributes probably more than anything else. When I'm flaring up, they always tell me to look out for back pain though -- they worry about your kidneys, your liver, etc (or so they've told me). The one time my back was hurting even a little during a flare, I called my doctor and he told me I needed to go to the ER right away and that he was sending an ambulance to get me. I nixed the ambulance because I was with my mother but it got the point across -- if you're flaring up and you have back pain, call your GI doctor, do not wait.

I'm curious if anyone else with Crohns has had immune system related symptoms outside of their digestive symptoms? I've got arthritis, and stress-related asthma (or that's what they call it when I had my one asthma attack), and vitiligo on my face (which is a skin pigment thing -- fortunately I'm very pale so it's hard to tell unless you're in certain lighting or you're my color-blind best friend.) I gather this sort of thing isn't super uncommon, but I don't hear a lot about it. What are your experiences?


----------



## Elektrikhd

I get joint pain, especially in my knees. I also have a worse time with infections, although I think that's a slightly different situation, possibly from the meds. I also have Glaucoma, but I don't know if that is at all related.

I've been getting back pain lately, and not joint pain...low, to the sides. I told my doctor, but they didn't seem too concerned. I've wondered if it might be kidney related, though. And I'm flaring right now, not having good luck with meds. I'm calling my doctor again tomorrow.


----------



## grahamburgers

Your doctor wasn't worried that it might be your kidney when you were flaring up?

I had pain in that area (left side, lower back) during my flare up back in high school, and my doctor was a) furious that I waited 45 minutes to call him about it and b) insistent that I drop everything and go to the nearest emergency room immediately. It wasn't anything kidney related but he wanted to be safe.


----------



## hollistic_Joe

Hi all I recently had a flare up which changed my diagnosis completely and am wondering if you all could be of assistance. I was first diagnosed with Crohns proctitis in May 2013. My first symptom started in late September early October 2012 and it was geographic tongue. My second symptom was actually blood streaked on otherwise normal stool this lasted for several weeks before changing to rocky black blood like stool  followed by odd partial constipation. This lasted until early may 2013 when the bloody explosive diarrhea started. I saw my mothers first GI (MOM has UC with no prior family history, illoestomy 2013,-J-pouch surgery early 2014 done by different doctors Not affiliated with the first been nearly as perfect as possible ever since) he at first in December 2012 said I had a fizzure. His may 2013 diagnosis following colonoscopy with no blood work, and a cancer only biopsy was Crohns proctitis. I was given Canasa and put on my way this never really worked. I began Cortifoam with canasa, Oct 2013, also didn't work. Jan 14 started Hash oil, stopped cortifoam/canasa stopped the blood, regained control but had watery diarrhea 1-3 times a day until Dec 2014. Dec 2014 full stools returned somewhat with the normal watery stools half the time. End of December blood returned like in the beginning -Full flare up Jan 18th -Feb23. 2015. Went to hospital Feb 22/3 spent night full CT scan and blood work revealed, light inflammation of ascending colon to hepatic flexure with no inflammation anywhere else. Blood work revealed sedimentation rate 31 when normal 15 Creative was 1.8 White blood cell count at 12.1 The diagnosis was set as Crohns Colitis. Put on 10 day Cirpro/flagyl combo and 7 days of Canasa. Since March 1st I have been perfect and my geographic tongue is gone. My doctor says that this flare was bacteria only and that it wasn't the disease however he thinks my diagnosis is the same though he would like to do more tests when I return from Michigan(law school). I have had 1 bm per day full stool no water every day since. I have ate all old trigger foods and have had no reaction at all almost no gas either. I am only taking VSL3 and hash oil to this point. My question to all of you is 1. Have any of you had similar stories? 2. Do you think its possible I was miss Diagnosed initially and may have had some bacteria the whole time(2.5 years). 3. Does anyone know about colon based Tuberculosis or MAP? 

Any information would help I am curious to know all opinions, so lets hear it.  

My


----------



## Meliss@

CrohnsChicago said:


> 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 CrohnsChicago and anybody who is willing to share their wisdom,

Thank you for your post. I wanted to ask you about your experience in identifying problem foods for you.  

I was diagnosed with Crohn's-colitis last Tuesday (I have ulcerations in my sigmoid colon, two segments of my transverse colon and two segments of my ascending colon) am so confused about what is okay to eat and what isn't. Everything I eat results in abdominal pain and I find myself running to the restroom to either have a bm or  "explosive" gas that produces blood and mucus only. 

Anyway, I began a low fiber diet two weeks ago and went on Apriso one week ago. I no longer have diarrhea and the frequency of urgent trips to the restroom has gone down. However now when I have a bm that produces something other than gas, blood and mucus, it is pretty painful.

Since I am in a flare, should I continue a low fiber diet, or should I add fiber to my diet to help with the movement along my colon? Also, I am considering going on the AIP Paleo diet to figure out what my trouble foods are. How did you identify what bothered you and what didn't? Are raw vegetables and apples with skin to be avoided at all costs?  

I'm sorry that this was so long and a bit tangential but I'm so confused and have no idea how to manage the symptoms of this disease that I have been newly diagnosed with. The information on nutrition and Crohn's is conflicting, confusing and vague and I'm just lost and frustrated and kind of scared. 

Thank you for taking the time to read my post.


----------



## Jackie Aba

I think the SCD (Specific Carbohydrate Diet) is a good guide, and I have followed the basics of that ever since becoming ill with Crohn's/Colitis.  My own personal change to
that diet is that I do occasionally eat rice and quinoa. and the only dairy I have is the Friendship brand farmers cheese as an ingredient in the almond bread and some other SCD recipes.  You can bake all kinds of goodies with almond flour to replace wheat flour.  Cooked fruits and vegetables, homemade chicken soup, eggs, fish, chicken,
stay gluten free (no wheat, corn, oats, potatoes, etc.) and try to eliminate as much sugar as possible.  I use honey and agave. It is a restrictive diet and makes dining out
difficult, but, for me, it is worth it.


----------



## Pilgrim

My daughter also has Crohn's in her colon. When she started to heal and her BM's became more formed, she cried a lot in the bathroom (sometimes screamed). It was a process. As the healing continued the tears started to decrease. The process took weeks. Now the pain from passing formed stools is gone. I hope that your pain is from the same situation, and it means that things are healing. 

We tried SCD and it didn't work for her when we tried it. But, that said, I think we have retained a lot of the diet. No dairy except for home made SCD yogurt and certain cheeses, baking with almond flour and limiting gluten. Honey as our sweetener for her. The interesting thing is that, because she is so young, what she eats is very instinctive. _She tells me_ that she doesn't want a sandwich with regular bread, or that she would prefer a sliced green apple (skins on) with plain yogurt for breakfast instead of the cereal that her siblings are scarfing down. It's really interesting!

But I have to tell you there is no gluten in potatoes. And they are a major staple for her, particularly requested with fresh garlic and rosemary and olive oil. Maybe works for some and not for others. 

I think the problem with fresh fruits and veggies come when a patient has a stricture. But you could ease into them with baked apples, and roasted or other cooked veggies?

Anyway, I hope you keep us posted on what has worked. It's so hard to get through the diagnosis, but it sounds like you are ready to get to work for your health!


----------



## nitty

Hi Meliss@,

Have you tried any rectal medication like suppositories?  I know they're not very pleasant to use but they can deal with inflammation right at the lower end and can be very effective, and they don't have to be used long-term.

I am currently having a bit of a flare that mainly seems to be proctitis, and so I am taking a 4-6 week course of Pentasa suppositories which have really helped with the pain of going to the loo.

It might be worth a try, otherwise you can get into a vicious circle of the pain causing you to avoid doing a BM and then being tense because of the expectation of pain and it all just seems to get worse.

Good luck.


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## scottsma

Hi,newbie crohns coiitis martyr here,although as you can see from my posts I'm an ardent supporter of this great forum.I was first dx'd with Proctitis in 2006 and have used suppositories since.After some probs late last summer and many of the usual tests I've now advanced up the ladder...Oh happy days !!! I'm also waiting for a gall badder removal as poyps were discovered accidentally (?) during the tests.Gastro said today to continue using supps (Asacol) as and when.They have served me well,so far.


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## Angie's Mom

Hi everyone,
So I just got back from seeing my GI. Remicade and Humira are no longer working for me and I am in a sever flare complete with fistulas and over a foot and a half of diseased bowel. My GI told me he can't help me any more and is sending me to another doctor who is more skilled at dealing with "difficult" cases.
If the drugs don't work, what's next? He says I'm not a good candidate for surgery because he doesn't think I will heal well...

Now what? Any one else have this happen to them?


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## fuzzy butterfly

Hi Angiesmom iv not had that happen, but did your doc say why you wouldn't heal well, seems an odd thing to say!!! Just wondering because what if surgery turns out to be your only option at some point? , best wishes


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## Angie's Mom

mandyk said:


> Hi Angiesmom iv not had that happen, but did your doc say why you wouldn't heal well, seems an odd thing to say!!! Just wondering because what if surgery turns out to be your only option at some point? , best wishes


He indicated that because of the level of diseased colon there are no pieces of colon that can be re sectioned together safely.

I feel so lost! To make matters worse, the new specialist can't see me until Oct 14th!


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## fuzzy butterfly

Aw hunnie, ok that explains why he said that.. Why the heck do we always have to wait ages for appointments when we are at our wits end with pain and worry, it's a darned crime if you ask me!!!. I really hope they can find something to work for you hun, it's a blooming nightmare getting stuff sorted out but I hope they do asap. Wishing you all the best, I'm here if you want to have a moan or any thing you think I maybe able to help you with.. Try and keep strong hun .


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## Angie's Mom

I'm just wondering if any of you get tail bone pain at all. I have Crohn's/Colitis so I get the best of both worlds. I'm in a flare right now and I find I'm having low back pain near my tailbone. 
Anyone else?


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## scottsma

I have low back pain but not THAT low.Just below my waist line.


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## Charlotte.

Angie's Mom, do you feel the pain directly in the tailbone? I do have tailbone pain but only when I have pain in my inflamed iliosacral joint as well. Have your joints been checked for inflammation yet?
You tried Remicade and Humira, right? I'm not familiar with biologics in the US, but what about Simponi, for example?


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## Angie's Mom

Charlotte. said:


> Angie's Mom, do you feel the pain directly in the tailbone? I do have tailbone pain but only when I have pain in my inflamed iliosacral joint as well. Have your joints been checked for inflammation yet?
> You tried Remicade and Humira, right? I'm not familiar with biologics in the US, but what about Simponi, for example?


Hi Charlotte,
I was diagnosed with sacral illitis, so I'm VERY familiar with that pain unfortunately... The tailbone pain seems to be separate from that. I have an appointment to see my Rhumatologist in 3 weeks and I imagine she will run a battery of tests.
So I'm not sure about your level of disease, but I'm wondering if you ever get vaginal pain as well. When I'm flaring I sometimes get stabbing pain and the sensation of having to urinate. I suspect this is a fistula. Any thoughts!


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## Charlotte.

Hi Angie's Mom,
Oh, I'm sorry you are also very familiar with that kind of pain as well. As if it's not enough having Crohn's, right?
Well, I sometimes get ovary pain when I'm having my period but only when I'm flaring or having pain already, otherwise not, then I'm totally fine. Weird, to my mind. I did not have vaginal pain or the sensation of having to urinate. I'm crossing my fingers that it's not a fistula. Maybe the area is very sensitive in general when some tissue next to it is inflamed? Also, you have to pay into account that a swollen small or large intestine touches other organs much closer than it would when it is not swollen due to inflammation (it swells towards the lumen but also to the exterior). I also heard that the mesentery tissue can cause cramping-like symptoms as well when it is too active in the abdomen. Many many possible reasons, to my mind. Does not necessarily have to be a fistula. Do you already have one?


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## Angie's Mom

Hi Charlotte,

I do have a fistula but its not there. I'm a bit of a mess! I seem to have a little bit of everything including a chronic ear infection that caused vertigo! I see my new specialist in October, lets hope he can help.


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## Angie's Mom

So I've started getting really dizzy. It lasts the better part of the day and makes it so that if I move, turn or bend over to quickly I almost fall over. 

Any thoughts on why this is happening? Blood loss?


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## scottsma

Have you had your Blood Pressure checked lately ? Low BP can cause dizzy spells.
How much blood are you losing and for how long ?
Don't take chances with new symptoms,get checked out.Better safe than sorry eh ?


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## Angie's Mom

scottsma said:


> Have you had your Blood Pressure checked lately ? Low BP can cause dizzy spells.
> How much blood are you losing and for how long ?
> Don't take chances with new symptoms,get checked out.Better safe than sorry eh ?


My bloodpressure has always been ridiculously low 92/53, but I didn't even think about it dropping. I've been losing about 1/2 cup (125ml) or more a day since mid July. It's been a bit more over the last few weeks though. 

So frustrated!!


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## fuzzy butterfly

Hi Angie,s mum. If I were you I would go docs asap, can never be to careful hun x


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## ronroush7

I was told earlier this year that I have Crohn's Colitis.  How can you tell if you are completely emptied.  I thought I had read that one of the symptoms was that you don't feel like you have completely evacuated.


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## ronroush7

Angie's Mom said:


> My bloodpressure has always been ridiculously low 92/53, but I didn't even think about it dropping. I've been losing about 1/2 cup (125ml) or more a day since mid July. It's been a bit more over the last few weeks though.
> 
> So frustrated!!


My blood pressure always tends to be low.


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## scottsma

ronroush7 said:


> I was told earlier this year that I have Crohn's Colitis.  How can you tell if you are completely emptied.  I thought I had read that one of the symptoms was that you don't feel like you have completely evacuated.


That's called Tenesmus Ron.I have it and I only know I'm emptied when I start to feel comfortable.Usually by noon.I get fed up of running to the bathroom and finding it's either a false alarm or not worth the bother.Of course we have to bother,just to be sure.
I find it especially annoying during the colder months,having to fight my way through layers of clothing.oo:


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## ronroush7

Thanks.  No accidents.


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## ronroush7

Happy Thanksgiving.


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## scottsma

ronroush7 said:


> Thanks.  No accidents.


I have never had an accident Ron,but boy it's been close many times.


  Happy Thanksgiving Ron.Have a good day.


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## ronroush7




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## Angie's Mom

ronroush7 said:


> I was told earlier this year that I have Crohn's Colitis.  How can you tell if you are completely emptied.  I thought I had read that one of the symptoms was that you don't feel like you have completely evacuated.


Unfortunately, for me anyway, there isn't any way to tell if you are empty. Part of the issue with Colitis, is that the inflammation is right in the rectum. When stool gets to the rectum it sends a message to the brain saying "hit the can". For us, blood, mucous, swelling all send the same false message.


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## ronroush7

I had a doctor tell me once that sometimes your brain can send fslsr messages with this disease.


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## nitty

Angie's Mom said:


> Unfortunately, for me anyway, there isn't any way to tell if you are empty. Part of the issue with Colitis, is that the inflammation is right in the rectum. When stool gets to the rectum it sends a message to the brain saying "hit the can". For us, blood, mucous, swelling all send the same false message.


That's my main problem.  I get no warning and just have to get to the loo NOW!!  I also find that there doesn't seem to be any 'storage capacity' - the reason I have to go so often is not due to loose stools, but that as soon as any gets near it has to come out, rather than waiting for any more, hence lots of small stools and urgent visits.  The mucous is another attractive issue!


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## ronroush7

scottsma said:


> That's called Tenesmus Ron.I have it and I only know I'm emptied when I start to feel comfortable.Usually by noon.I get fed up of running to the bathroom and finding it's either a false alarm or not worth the bother.Of course we have to bother,just to be sure.
> I find it especially annoying during the colder months,having to fight my way through layers of clothing.oo:


If the tenesmus is happening, doe that mean I am in a flare?


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## Bonzo 4

Anyone use  eceris? If so any luck?


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## ronroush7

Not here.


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## ronroush7

Anyone else?


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## Angie's Mom

Bonzo 4 said:


> Anyone use  eceris? If so any luck?


I'm not even sure what that is.


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## ronroush7

Never heard of it myself.


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## scottsma

ronroush7 said:


> If the tenesmus is happening, doe that mean I am in a flare?


I don't think so Ron,it's just one of the many unpleasantries we must tolerate.


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## scottsma

Bonzo 4 said:


> Anyone use  eceris? If so any luck?


HI,could you mean Uceris ? Type it in the search box at the top of the page.There's lots of info.there.:thumleft:


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## CMT

Bonzo 4 said:


> Anyone use  eceris? If so any luck?


I used Uceris a couple of years ago. It did not help my symptoms so I was weaned off and put on other medications


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## Bonzo 4

I was just put on this steroid , to bring down inflammation . The drug is called uceris.


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## Bonzo 4

CMT dos you have any side effects? I've never taken anything for my crohns , my DR, asked that I should try.


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## ronroush7

I am confused.  Mostly, my Crohn's Disease has been in my small intestine.  Recently, I was told I have Crohn's Colitis but I read an article saying this type is only in the colon.  So how can I have had it in both places if I am making sense?


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## fuzzy butterfly

Hi Ron, I think that you have had it in the small bowel for a while, now it has spread/sprung up into the colon. you can have it in more than one place at a time. It sounds like you have ileocolitis, as this affects both small intestine and colon. There are 5 types... Ileocolitis, ileitis, gastroduodenal, jejunoilitis, crohn's (granulomatous) Colitis 
Any of these can overlap thus you have crohn's in different places in the digestive tract. Hope that helps you Ron. 
Love n hugs Mandy


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## ronroush7

Thanks,Mandy.


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## fuzzy butterfly

your welcome Ron


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## Jodyanne63

After a major flare ended my sulfasalazine affair of 20 years, my doc decided to work from the bottom up on the medication ladder for CC. 6-MP did not work for me. After 3 weeks it caused me to have such severe diarrhea that I was admitted to the hospital for dehydration. Evidently this is very rare? My doctor has recommended I try Imuran next. I'm still on Budesonide, and imagine I will be until if and when the Imuran starts working. I'm pretty new to all of these medications. I have researched them but I find that personal experiences are very helpful. I would really like to know if anyone had the same reaction to 6-MP and how many have had success with Imuran for Crohn's Colitis.


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## scottsma

Hello and welcome to the forum.I can't advise you as I haven't used any of the meds.you refer to,but I'm sure someone will be along soon who can help.
I just wanted to say that I hope you feel better soon.


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## scottsma

It's a while since anyone posted on this particular thread,so I was just wondering how you're all doing ? It would be nice to think you're all doing well,but I think that's a wee bit unrealistic.


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## ronroush7

The specialist says I am in remission but I have good days and bad days both .


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## scottsma

Me too Ron,never two days the same.


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## teeny5

Me too! In remission but still get bad days here and there...yesterday was not a good day, but today is much better. Spent so many years trying to put on weight and now am trying to lose some! So much harder when I can't eat too much roughage (healthy fiber rich foods) and when too much exercise really does me in. But I have lost 5lbs so far! 

Glad to hear others are doing well too. Happy 4th of July to my fellow Americans! I will be relaxing at home trying to keep the dogs occupied so they don't freak out over fireworks tonight. Last night the neighbors set off a few and I had all 3 dogs huddled in the bed with me!


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## ronroush7

teeny5 said:


> Me too! In remission but still get bad days here and there...yesterday was not a good day, but today is much better. Spent so many years trying to put on weight and now am trying to lose some! So much harder when I can't eat too much roughage (healthy fiber rich foods) and when too much exercise really does me in. But I have lost 5lbs so far!
> 
> Glad to hear others are doing well too. Happy 4th of July to my fellow Americans! I will be relaxing at home trying to keep the dogs occupied so they don't freak out over fireworks tonight. Last night the neighbors set off a few and I had all 3 dogs huddled in the bed with me!


Congratulations on  the lost weight.


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## fuzzy butterfly

Hi well done on your weight loss. Aw poor doggies, my sisters dog hates fireworks. 
Im in remission and suffer joint pain n fatigue daily. I am stuggling to gain weight .. how did you gain it teeny . I really cant seem to find a way to gain..? 
Love n best wishes to all


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## scottsma

Teeny,I empathise with the dog / firework problem.I was told it's best to ignore them or they think,if you cuddle them,they're getting rewarded for being scared.But it's so hard.I used to be ill with worry about them come Guy Fawkes.It's only one night but the fireworks went off for a fortnight.
Good on you for your weight loss.I sometimes think a bit of extra weight comes in handy for the "bad" times.


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## ronroush7

scottsma said:


> Teeny,I empathise with the dog / firework problem.I was told it's best to ignore them or they think,if you cuddle them,they're getting rewarded for being scared.But it's so hard.I used to be ill with worry about them come Guy Fawkes.It's only one night but the fireworks went off for a fortnight.
> Good on you for your weight loss.I sometimes think a bit of extra weight comes in handy for the "bad" times.


After I had my first flare and lost 34 pounds, I remember my wife saying that a little extra weight might be good.


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## teeny5

fuzzy butterfly said:


> Hi well done on your weight loss. Aw poor doggies, my sisters dog hates fireworks.
> Im in remission and suffer joint pain n fatigue daily. I am stuggling to gain weight .. how did you gain it teeny . I really cant seem to find a way to gain..?
> Love n best wishes to all


My GI had me eating what I could three meals a day, plus drinking an Ensure 3 times a day. I got to my normal weight, but then once I could eat normal again kind of pigged out! Trying to get back to a healthy weight. My GI encourages me to be as healthy as possible with diet and exercise. He believes because our bodies are fighting the disease we should strive to be in good health to give our body every advantage possible. He's good about giving suggestions based on whether I am flaring or not. I feel best when I am about 10lbs lighter than I am currently. The extra weight was putting pressure on my hips, back and knees. I can only do light exercises, but seems to still help with stress.


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