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Crohn's Disease Forum » Your Story » New to this site with Crohns and Colitis


07-23-2012, 05:04 PM   #1
pinkvhurgoe
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Location: methuen, Massachusetts
New to this site with Crohns and Colitis

I was diagnosed with ulcerative colitis 12 years ago, and recently had a colonscopy with the results of having the colitis and crohns. I don't feel like I've ever been out of a flare-up because of the food I eat. My doctor tells me food has nothing to do with either disease, but it really does. Food affects the symptoms of crohns and colitis. I don't know what to do about this, because it seems like everything I eat hurts my stomach. I don't go out much at all, and even have a friend do most of my food shopping for me, because I have to go to the bathroom anytime I go in any store (i'm sure it is part nerves and anxiety that I will shit my pants in public). It makes it hard to hold down any job too. Are there certain foods people with both diseases know is a no-no? (My doctor said it is pretty rare for people to have both diseases, but it happens I guess.)

oh, and i have a food addiction, mostly to chips, so It is extremely difficult for me to just stop foods that I know bother me, like dairy, soda, candy, fried food, junk food, nuts/seeds, condiments, juice, fruits, veggies, etc.

I am confused as what to do. I mean is there really a point in being on medication, if I can't stop eating chips and other junk foods? I have been on pentasa for the last 2-3 weeks so far.
07-23-2012, 05:17 PM   #2
kiny
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Hey, many doctors know food might influence the disease in some way, but they would rather not tell the patients, because food has usually very little effect in the short term and because the result is that patients immediately think that they don't need medication. Food does not cure crohn.

You ask if there's a point in medication, very much so, without medication crohn can have serious consequences.
07-23-2012, 05:47 PM   #3
Keepingfaith
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Welcome to the forum!

So, your doctor has confirmed you have Crohn's Colitis and not UC? You can't have both UC & Crohn's(I found this out at a CCFA event last week) and the medications used to treat it are different. Without Prednisone I would probably be on the operating table with my colon and bits of small intestine removed. Medication plays an important role in the treatment of this disease. I have met too many people who wanted to play 'God' & ended up in the ER and later on in recovery with a stoma because they didn't want to take care of themselves. Diet also plays an important role and it is trial and error. I would reccomend going to the diet forum to get an idea. A lot of people do a food diary to help them find their trigger foods. Different foods can aggravate different parts of the intestine.

If chips are what are causing some of your symptoms and you truely want those symptoms to go away YOU CAN at least lessen your consumption of chips, if not fully give it up. I'm sure David will leave a comment about chips & their link to Crohn's with a huge smile on his face

This forum is great for diet advice. So many people on here have tried different diets used to help alleviate symptoms of IBD so they can point you in the right direction. Take care!
__________________
Current medication:
Entyvio
Imuran
Entyvio
Prilosec
Protonix
Seasonique
Noritriptyline
Steroid suppositories
Canasa suppositories

Diet: Feeding via J-tube

DX: Crohn's Disease, Juvenile Rheumatoid Arthritis, Endometriosis, Gastroparesis

Previous Medications:
Remicade- Drug Induced Lupus, Humira, Prednisone,
Entocort, 6MP, Methorexate, Amitriptyline, Asacol, Flagyl, Apriso, Cimzia, Cipro, Sulfasalazine etc. You name it, I've tried it.
07-23-2012, 05:49 PM   #4
Lucinda
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Join Date: Jul 2012
Location: Oregon
Food does not cure Crohn's but it can affect how you feel. Many are finding dairy and gluten-free is a good place to start. That can be overwhelming at first but it can be done without breaking the bank.

Also how much inflammation you have can determine what you should eat. Highly inflamed means low-res diet. Not nuts, seeds, raw veggies, etc.

I understand the addiction to junk food as I struggle with that myself. However, when I get it in my head that if I eat x, I feel sick, it becomes easier to avoid. It's also easier when I am not stressed out.

One thing that I did was go to a naturopath and had the blood test for food intolerances. It gave me a place to start so if I was going to cut out certain foods, I was going to get the most bang for my buck. I gave up gluten, egg, and dairy and it made a huge difference. A side-effect of doing that was it forced me to read the ingredients on all the food I ate. When I saw what I was actually eating, it grossed me out and it became easier to stick to real food.

It's not easy. But for me personally, I have found sticking to a better diet has improved how I feel overall. I still have pain, etc. But it's not as severe and I bounce back faster. Plus I have more energy which makes it easier to take care of myself. Good luck.
07-24-2012, 03:02 AM   #5
Angrybird
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Hello and welcome to the forum. With regards to medication what have you been on previously and leading up to the Pentesa?

When it comes to diet whilst as already mentioned it cannot cure crohns it can certainly help wth symptoms. In this area it really does depend on how far you are willing to go. For some it can help to go on an elemental diet or enteral nutrition as this can really help to calm the bowel down - some have even found this as beneficial as going on steroids but without the potential side effects.

Alternativly if this is a route you don't want to go down then at least look into starting up a food diary, we are all different with what upsets the tum and what doesn't so this way you can pin point your problem foods. I must admit that most of what you mentioned above are problem foods for most - especially the nuts/seeds as these can irritate the bowel. Have a nosy around our diet and sups forum as there will be plenty of helpful info here about different things to try.

Wishing you all the best.

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
07-24-2012, 05:26 AM   #6
CheerBear12
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Hi it's called indeterminate colitis if they can't tell wether it Crohns or colitis. I've been diagnosed with it. I hope you sort your diet out soon. Big hugs luckily I haven't had any problems since being ill. Mine was too badly inflamed too tell what it was. He said it was the worst he had ever seen and I believe him your in my thoughts xx
07-24-2012, 07:41 AM   #7
pinkvhurgoe
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Join Date: Jul 2012
Location: methuen, Massachusetts
Thanks for the reply. I don't understand how lots of people are saying there is no such thing as crohns colotis when I (and others) have been diagnosed with it. The doctor said part of my colon shows signs of it being just UC, and other parts show it as Crohns. It seems logical and accurate. He said it is a fairly new diagnoses (within years i guess). The main diff between the 2 diseases is that in UC, the colon is the only area affected. With crohns, it can be anywhere along the digestive tract. but I only had my colon looked at with the scope, so still confused.

Welcome to the forum!

So, your doctor has confirmed you have Crohn's Colitis and not UC? You can't have both UC & Crohn's(I found this out at a CCFA event last week) and the medications used to treat it are different. Without Prednisone I would probably be on the operating table with my colon and bits of small intestine removed. Medication plays an important role in the treatment of this disease. I have met too many people who wanted to play 'God' & ended up in the ER and later on in recovery with a stoma because they didn't want to take care of themselves. Diet also plays an important role and it is trial and error. I would reccomend going to the diet forum to get an idea. A lot of people do a food diary to help them find their trigger foods. Different foods can aggravate different parts of the intestine.

If chips are what are causing some of your symptoms and you truely want those symptoms to go away YOU CAN at least lessen your consumption of chips, if not fully give it up. I'm sure David will leave a comment about chips & their link to Crohn's with a huge smile on his face

This forum is great for diet advice. So many people on here have tried different diets used to help alleviate symptoms of IBD so they can point you in the right direction. Take care!
07-24-2012, 07:42 AM   #8
pinkvhurgoe
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Join Date: Jul 2012
Location: methuen, Massachusetts
Thanks for the reply. I don't understand how lots of people are saying there is no such thing as crohns colotis when I (and others) have been diagnosed with it. The doctor said part of my colon shows signs of it being just UC, and other parts show it as Crohns. It seems logical and accurate. He said it is a fairly new diagnoses (within years i guess). The main diff between the 2 diseases is that in UC, the colon is the only area affected. With crohns, it can be anywhere along the digestive tract. but I only had my colon looked at with the scope, so still confused.

Welcome to the forum!
So, your doctor has confirmed you have Crohn's Colitis and not UC? You can't have both UC & Crohn's(I found this out at a CCFA event last week) and the medications used to treat it are different. Without Prednisone I would probably be on the operating table with my colon and bits of small intestine removed. Medication plays an important role in the treatment of this disease. I have met too many people who wanted to play 'God' & ended up in the ER and later on in recovery with a stoma because they didn't want to take care of themselves. Diet also plays an important role and it is trial and error. I would reccomend going to the diet forum to get an idea. A lot of people do a food diary to help them find their trigger foods. Different foods can aggravate different parts of the intestine.

If chips are what are causing some of your symptoms and you truely want those symptoms to go away YOU CAN at least lessen your consumption of chips, if not fully give it up. I'm sure David will leave a comment about chips & their link to Crohn's with a huge smile on his face

This forum is great for diet advice. So many people on here have tried different diets used to help alleviate symptoms of IBD so they can point you in the right direction. Take care!
07-24-2012, 07:44 AM   #9
pinkvhurgoe
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Join Date: Jul 2012
Location: methuen, Massachusetts
So how come lots of people say there is no such thing as crohns colitis? If you, me and others I've read about online have it.....

Hi it's called indeterminate colitis if they can't tell wether it Crohns or colitis. I've been diagnosed with it. I hope you sort your diet out soon. Big hugs luckily I haven't had any problems since being ill. Mine was too badly inflamed too tell what it was. He said it was the worst he had ever seen and I believe him your in my thoughts xx
07-24-2012, 08:13 AM   #10
Clash
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When you say Crohns colitis, that is the term for Crohns located in your colon. When the poster above said indeterminate colitis that term implies that the area of your colon shows symptoms of UC or CD etc. but that it is in conclusive as to which colitis it is. At least I believe that is how you would describe it. Anyway hope you get to feeling better and you will find some great info and people on this site.
07-24-2012, 08:27 AM   #11
CheerBear12
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Hi mine only affected my colon but all of the layers were affected and with uc it's usually only the first few layers. I've researched it online as well. Clash you are right mine had symptoms of both. It's so hard having this. x
07-24-2012, 08:35 AM   #12
Rossy
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Thanks for the reply. I don't understand how lots of people are saying there is no such thing as crohns colotis when I (and others) have been diagnosed with it. The doctor said part of my colon shows signs of it being just UC, and other parts show it as Crohns. It seems logical and accurate. He said it is a fairly new diagnoses (within years i guess). The main diff between the 2 diseases is that in UC, the colon is the only area affected. With crohns, it can be anywhere along the digestive tract. but I only had my colon looked at with the scope, so still confused.
Well if he's saying you have both then who is to argue, I for one don't understand how this would be impossible as they are both related, autoimmune diseases and as many on here will experience, if you have 1 autoimmune disease then in all likelyhood you may get others. Why is it that some are definite that both can't co exist?
As said Crohns-Colitis is crohns of the colon so that is easliy confused by some, thinking it is both conditions, which it isn't. Indeterminate is just that in that can't distinguish the results conclusively to say if its crohns or UC.
Many people go from one diagnosis to the other.
However, apart from just the visual scope I imagine the biopsies, did they take any, will shed further light on your IBD.
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Pancolitis
2003


Just about hanging on to my Colon!
Mezavant xl
Pred (my back up)
Entocort (no longer works)
Azatrophine (gave me pancreatis - ouch)
07-24-2012, 08:54 AM   #13
CheerBear12
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My surgeon said you can't have both one disease is bad enough don't you think? It's just when they say indeterminate colitis it means it has symptoms of both diseases and can't tell any how I hope you get sorted soon and feel better. Keep us posted x
07-24-2012, 04:05 PM   #14
GutlessWonder86
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Join Date: Jul 2010
Crohn's colitis means that the Crohn's disease affected/inflamed the large intestines.

Ulcerative colitis is where it's only in the large intestines and recutm/anus whereas Crohn's affects the entire digestive tract starting at the mouth, then goes to the esophagus, stomach, small intestines, large intestines, rectum/anus.

check out the wiki here on the forum for more information.
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