• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Crohn's Colitis Support Group

Welcome to the Crohns Colitis Support Group.

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

Crohns Colitis can affect any part of the colon.

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

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


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

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

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

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

It is recommended to see an Opthamologist every two years.

Please add any comments or questions you may have in helping others or finding treatment and support for yourself.
 
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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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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. :eek:) I will keep a look out for the information regarding Kefir and let you know if I find anything.
 
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...
 
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!
 
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?
 
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.
 
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

Super Moderator
What you are able to eat/the type of diet your body is able to tolerate depends on your condition and the symptoms it presents.

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

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

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

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

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

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

CrohnsChicago

Super Moderator
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.
 
His answer made me a little uncomfortable which is why I posted here. Thanks for the advice. I will follow through with it.
 
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?
 
For me, it's something I live with. I was in remission for over 20 years and then bam, the mega flare hit. I have had symptoms every day for almost ten years now. Lomotil works, but it scares me since I have narrowing. I usually just live with it. Some days it's better, some days it's worse. I just never know.

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

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

Honey

Moderator
Staff member
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!!!!
 
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.
 
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.
 
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??
 
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

Super Moderator
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.
 
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!
 
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?
 
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.
 

Honey

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

CrohnsChicago

Super Moderator
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.
 
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).
 

CrohnsChicago

Super Moderator
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: 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.
 
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.
 
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.
 
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. :cry:

Thank you to anyone who can answer my questions.
 

Honey

Moderator
Staff member
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:
 
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
 
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.
 
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
 
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?
 
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.
 
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.
 
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.
 
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.
 
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!
 
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.
 
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???
 
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
 
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
 
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
 
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
 
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
 
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 :(
 
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
 
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
 
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.
 
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.
 
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.
 

DustyKat

Super Moderator
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
 
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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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.
 
Location
Hurst,
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?
 
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.
 
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.
 
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. :)
 
Location
Hurst,
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
 
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?
 
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
 
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!!
 
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:
 
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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