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Crohn's Disease Forum » Your Story » Just diagnosed with Crohn's Colitis


02-07-2017, 05:09 PM   #1
Bnot2bee
 
Join Date: Feb 2017
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Just diagnosed with Crohn's Colitis

Hi all...was just diagnosed with Crohn's localized in the Colon last Monday. Ugh. My case is designated "mild to moderate", so that's good I suspect! I had been having symptoms for about 2 months prior to my colonoscopy, mostly diarrhea (bloody) coupled with some mild cramping and just a general feeling of malaise. I just KNEW something was wrong and suspected some form of IBD and, alas, my suspicions were confirmed. The main premise for my post is to ask questions about medicinal treatment vs. diet control for mild cases. Since my colo, I have adopted a modified version of the SCD diet and my diarrhea has all but ceased and I feel better than I have in a few months! I was prescribed Lialda and Canasa and have not started them yet as I am apprehensive with medication; I have had a few adverse reactions to drugs over the years, one of them put in the hospital for 3 days, so you can understand my hesitation. I am wondering if anyone out there has had any success with diet and 'alternative' medicinal routes to address flares and control symptoms. Any feedback is appreciated. Thank you!

Bnot2bee
02-07-2017, 05:19 PM   #2
ronroush7
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Welcome. There is a section on here called Diet Fitness and Supplements or something similar. You might try there also.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
02-11-2017, 03:21 PM   #3
nitty
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Hi!

Your symptoms and diagnosis are the same as mine. It is about five years since I was in the same position as you, and with the same concerns.

After my own experience I would strongly recommend that you go with the medication, at least at first. If you manage to get the inflammation under control and the disease into remission, then you could consider whether to wean off the drugs.

Unfortunately, with inflammatory conditions like this, if the inflammation carries on for too long it will cause irreparable damage, leading to all sorts of complications and affecting your whole health. Sadly, my own attempt to wean off the drugs failed and I have just managed to get back into remission using immunosuppressants. You may need to accept that medication will always be part of your life now, but you will also find many people on this forum who have found other non-drug ways to maintain remission once they have achieved it.

What are the drugs that you have reacted badly to in the past? If you voice these worries to your doctor they may be able to reassure you if they are unrelated to any of the Crohn's drugs.

At this point I will come out with my regular mantra!! We cannot just worry about the negative side-effects of drugs. The positive 'side-effects' of them are that they can make our illness much better, even if they cannot cure it.
Consider the 'side-effects' of NOT taking any medication - the inflammation gets worse and even harder to manage by non-medical means.

I totally get where you're coming from. I wish I could have managed without meds, but it was not be, and I have to accept the side-effects and risks involved.

Have a good read around this forum and then you may feel better informed and reassured about which path might be the best for you.

Good luck!
02-11-2017, 03:29 PM   #4
cmack
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Welcome Bnot,

My doctor recommended http://nutritionfacts.org/video/achi...rohns-disease/ (this is a direct link to a video of how to put Crohn's into remission with diet)The whole site has been a useful tool for me. I was able to bring my disease into remission with diet. I hope you can be so lucky.
Give me a shout if you want to know what I did.

May better days lie ahead,

cmack
02-11-2017, 06:53 PM   #5
Lady Organic
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Welcome Bnot2bee!
It is so wonderful diet seems to be working for you. What i would strongly suggest is to have soon a fallow up colonoscopy or at least fecal calprotectin stool test and routine blood works to make sure your inflammation is decreasing and eventually at zero if possible with the diet alone. What is most important is not only to have a ''clinical remission'' (symptom free) but to also have a endoscopic/biopsy remission. Sometimes, we can think or feel the inflammation is gone, but it may not necessarily be the case. So it is always important to keep in touch with your medical team. Also if the diet seems to be working for you, I would suggest to remain on it even if you become completly in remission in order to avoid risking a relapse. Good luck!
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
02-12-2017, 12:41 PM   #6
Bnot2bee
 
Join Date: Feb 2017
Location: Omaha, Nebraska
Thank you everyone for your feedback! It is greatly appreciated. I am glad there has been some success with diet controlled remission and I also understand that at some point, drugs may become a permanent part of my existence. I am going to my GI doc in March for a follow-up, at which point I am sure they'll run some blood tests to see if my TNF levels are down; I've also been told I'll likely need another colo prior to the end of the year to monitor my progress. Yipee! Lol. Oh well, such is life now, I guess. Just need to get over it and realize this is my reality, going forward. Again, thank you ALL for taking the time to respond to my post. I'm sure there will be more forthcoming as time goes on. ~ B
02-12-2017, 01:24 PM   #7
ronroush7
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Welcome
02-12-2017, 01:37 PM   #8
cmack
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Bnot,

No problem. Anytime!


Hope everything goes smoothly,

cmack
02-12-2017, 11:44 PM   #9
Lady Organic
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cool, keep us update on your status, I am always very interested in knowing about people's success with diet. Good luck!
03-03-2017, 10:27 PM   #10
Bnot2bee
 
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So, I back-peddled on the diet a bit last week and boy, was that a mistake! Also, noticed a correlation between drinking a bit too much and symptoms. The setbacks I've experienced from deviating from the diet and indulging in a few too many vodka tonics are less than desirable. Lesson learned. Still trying to control this thing w/o meds, but starting to lose steam. Was thinking of giving turmeric curcumin a try for a few weeks and see what kind of result I have. Anyone out there try this approach? I feel like this is my last ditch-effort at a 'natural' attempt at controlling my symptoms before I bite the bullet and start the Lialda/Canasa regimen. Again, any and all feedback is appreciated.

Bnot2bee
03-03-2017, 10:31 PM   #11
ronroush7
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I hope you feel better soon

03-04-2017, 07:01 PM   #12
Lady Organic
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if diet works for you, I would really encourage you to keep going, especially now at the beginning. I wish i was in your position and seriously tried diet 15 years ago when I was diagnosed!
I have tried large amounts of curcuminoids and it was of no help to me. Only research being done on tumeric and colitis to my knowldege are tumeric enemas. Curcuminoids are definately worth a tried combined with diet imo. Good luck.
03-04-2017, 08:40 PM   #13
Magnolia24
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I was also diagnosed with mild crohn's colitis, and did very well for a few years with a balance of diet and meds.
I did the SCD strictly - started with intro, slowly introduced more foods, only added in a few non SCD foods (sweet potatoes, rice, and quinoa) when I had been in remission for awhile. For diets like SCD to be beneficial, you do really have to commit.
After my diagnosis I was put on prednisone and Imuran. I felt good after I stopped the pred and before Imuran reached a therapeutic dose, so it felt pretty clear that SCD was working. A few months later I switched to a milder drug, Apriso. I continued to feel good for around 3 years.
This past month I flared again for the first time since my diagnosis, and simplifying my diet has helped me get my symptoms under control quickly.
I don't know about diet without any meds, but I definitely believe that diet is a key component, and diets like SCD seem to work. I would agree with others who have emphasized the importance of keeping up with labs either way you decide to go. I do know how quickly and surprisingly this illness can turn, so you want to stay aware of any inflammation that may be starting.
Regarding alcohol...I would advise staying away until you've been symptom free for awhile, and choosing vodka soda over tonic - tonic has sugar so it isn't SCD.
I do take curcumin. I think it helps, but I do not know if it would be enough in the absence of any other meds.
I hope you start feeling well soon, and best wishes on this bummer of a journey that is IBD. Know that you have support

Last edited by Magnolia24; 03-04-2017 at 09:02 PM.
03-04-2017, 08:49 PM   #14
Magnolia24
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Also...While I was diagnosed as mild, my illness is now considered moderate-severe, so I think it is important to make decisions with the knowledge that crohn's is an illness that can change and develop over time...At least, it is something that I am now thinking about as I make my decisions about my next steps in treatment.
03-06-2017, 03:38 PM   #15
Bnot2bee
 
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Location: Omaha, Nebraska
Thank you Magnolia24 and Lady Organic! I misspoke when I said tonic; I mean vodka soda's. And yes, I realize the disease can change its course at any given time. My curcumin comes today...going to give it a shot for a while and see what it does. If nothing seems to abate the symptoms, I will start the meds on March 14th when I got back to my GI for blood work and consult. Thanks again, everyone, for taking the time to respond and for your reasonable well-thought-out responses. It is much appreciated.

~B
03-10-2017, 04:29 PM   #16
shadowdog
 
Join Date: Mar 2017
Location: Manitoba
Hi,

I was sick for several years (since grade 10) and finally diagnosed in 92 ( when I got intestinal pain) with Crohns (barium/ xrays). My X rays looked identical to ones in Medical books I looked at in Winnipeg, MB in between operations.
Maybe had Cancer also due to blood count. Had a bad ulcer in stomach too.

Emergency surgery a few months later while waiting to see a specialist in Winnipeg.
A Radiologist from the city (I'm in the North) tried to use a barium enema to clear a blockage in my large Intestine and I reacted to the barium with extreme pain.

I wanted them to put me out of my pain and I was injected with lots of Demerol and was unconscious where I don't remember anything after for over 24 hrs. They were
talking about flying me out to WPG and when they woke me to sign a forum for surgery
I thought it was that evening as they said it was 11PM. I found out the next morning where I felt great it was a whole day later! Soon as I started eating a few days later it was back to being very sick.

My Surgeon whom saved me said the blockage had turned gangrenous so no biopsy possible. Luckily I was sent out anyway. Lost 1/2 my large int.

Had a bag for 6 months where I was supposed to get strong for the second operation in which an internal infection from leaking staples almost did me in. Lucky the antibiotics worked! Got rid of my stomach ulcer too! They really didn't know Helicobacter was the cause then. I really hurt after the second operation as they were looking at my organs carefully for cancer, which luckily they never found in evidence! Great and lucky to be rid of the bag!

Next 2-3 years had me at the hospital to get my stomach pumped (about 3 times) as everything would go in knots when I ate the really wrong thing. I could see where it happened through the stoma when I had the bag in that the intestine there would tighten up in a knot.

I was offered Prednisone in the beginning which I refused in spite of a very angry DR.!
I saw what it did to a cousin whom was on it for years and a Nurse friend agreed with me from what she had seen. I tried a sulfaside or similar , but made me sick!

I had realized what I was eating in HS affected me and first went off chicken/turkey and milk. Later pork and beef. Later discovered organic meat fine, but I would never eat beef as I don't trust anyone (Mad Cow Disease etc.) Pork will have too many Lectins and I can't afford organic chicken and it's not available in the North.

I had an Aunt whom was a retired nurse who got me a book called "Food & The Gut Reaction" It all didn't work for me and I realized I would have to start with basics like a diet a DR. had used to keep his cancer in check for 25 years.

The diet was called the
Macrobiotic Diet and was basically non farmed fish, rice, and broccoli , asparagus, & carrots. Article was in Sept 82 Life magazine article about a DR healing him self. He was diagnosed in about 74 with cancer throughout his body. I phoned the Methodist Hospital in Philly in 99 after an uncle was found to be full of Cancer to find out how the DR. was doing. The 2nd person I talked to said he had died almost 1.5 years before from a bad car accident , but he had done great when he stuck to the diet.

I had lump under the skin in my arm that had been growing bigger for several years and starting to hurt from the pressure. They wanted to deal with it another time , but it disappeared with my new diet in 4-5 months.

I have tried beans, tomatoes & brown rice and things weren't right (not good energy and some gas pain etc.) I found out recently Lectins are the issue.

I can eat only organic fruit like apples,blueberries,strawberries,raspberries,avocad os oranges, grapes, pairs bananas and pealing doesn't help (non-organic) as the chems. soak in!

Use organic garlic and onions and olive oil. Grape seed oil good too!

Don't use multiple vitamins as they made me sick and others (non sick people) say the same!

Instead only B12 and D once in a while as needed!

I can eat the Walmart brand raisins & prunes!

No deep frying etc either!

So no sugar, dairy, wheat, corn or other grains. I eat a little white rice. Lectins are also in tomatoes, peppers, potatoes, soybeans, dried beans, lentils,cashews, peanuts, diet sugars, canola , & corn oils.

Dark chocolate is okay once in a while with sweet fruits for me.

Canned foods as the plastic liner! Made me sick like I had prostate cancer! Very occasionally US canned salmon is my only cheating on that now!



I would start very simple first like that Dr. and I found it worked for me right off the bat. Adding beans and tomatoes, peppers so I realized didn't help me over the years.

Anyway maybe diet only may help you! You have to be Anal about it so I found out over the years as being cramped up sure hurts! Watch for processed rice as I have been really cramped up from it. The big bags of white Asian or US rice are good and Walmart 2 kg bags good so far.

And no Booze (maybe the best Vodka on the rocks later to celebrate!) or smoking etc.

Please feel free to ask questions! Almost 25 years drug free for me! I don't get the flue, colds etc either! I now believe the saying you are what you eat ingest!

Last edited by shadowdog; 03-10-2017 at 07:53 PM. Reason: SP
03-10-2017, 06:36 PM   #17
ronroush7
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Hi,

I was sick for several years (since grade 10) and finally diagnosed in 92 ( when I got intestinal pain) with Crohns (barium/ xrays). My X rays looked identical to ones in Medical books I looked at in Winnipeg, MB in between operations.
Maybe had Cancer also due to blood count. Had a bad ulcer in stomach too.

Emergency surgery a few months later while waiting to see a specialist in Winnipeg.
A Radiologist from the city (I'm in the North) tried to use a barium enema to clear a blockage in my large Intestine and I reacted to the barium with extreme pain.

I wanted them to put me out of my pain and I was injected with lots of Demerol and was unconscious where I don't remember anything after for over 24 hrs. They were
talking about flying me out to WPG and when they woke me to sign a forum for surgery
I thought it was that evening as they said it was 11PM. I found out the next morning where I felt great it was a whole day later! Soon as I started eating a few days later it was back to being very sick.

My Surgeon whom saved me said the blockage had turned gangrenous so no biopsy possible. Luckily I was sent out anyway. Lost 1/2 my large int.

Had a bag for 6 months where I was supposed to get strong for the second operation in which an internal infection from leaking staples almost did me in. Lucky the antibiotics worked! Got rid of my stomach ulcer too! They really didn't know Helicobacter was the cause then. I really hurt after the second operation as they were looking at my organs carefully for cancer, which luckily they never found in evidence! Great and lucky to be rid of the bag!

Next 2-3 years had me at the hospital to get my stomach pumped (about 3 times) as everything would go in knots when I ate the really wrong thing. I could see where it happened through the stoma when I had the bag in that the intestine there would tighten up in a knot.

I was offered Prednisone in the beginning which I refused in spite of a very angry DR.!
I saw what it did to a cousin whom was on it for years and a Nurse friend agreed with me from what she had seen. I tried a sulfaside or similar , but made me sick!

I had realized what I was eating in HS affected me and first went off chicken/turkey and milk. Later pork and beef. Later discovered organic meat fine, but I would never eat beef as I don't trust anyone (Mad Cow Disease etc.) Pork will have too many Lectins and I can't afford organic chicken and it's not available in the North.

I had an Aunt whom was a retired nurse who got me a book called "Food & The Gut Reaction" It all didn't work for me and I realized I would have to start with basics like a diet a DR. had used to keep his Cancer in check for 25 years.

The diet was called the
Macrobiotic Diet and was basically non farmed fish, rice, and broccoli , asparagus, & carrots. Article was in Sept 82 Life magazine article about a DR healing him self. He was diagnosed in about 74. I phoned the Methodist Hospital in Philly in 99 after an uncle was found to be full of Cancer to find out how the DR. was doing. The 2nd person I talked to said he had died almost 1.5 years before from a bad car accident , but he had done great when he stuck to the diet.

I had lump under the skin in my arm that had been growing bigger for several years and starting to hurt from the pressure. They wanted to deal with it another time , but it disappeared with my new diet in 4-5 months.

I have tried beans, tomatoes & brown rice and things weren't right (not good energy and some gas pain etc.) I found out recently Lectins are the issue.

I can eat only organic fruit like apples,blueberries,strawberries,raspberries,avocad os oranges, grapes, pairs bananas and pealing doesn't help (non-organic) as the chems. soak in!

Use organic garlic and onions and olive oil. Grape seed oil good too!

Don't use multiple vitamins as they made me sick and others (non sick people) say the same!

Instead only B12 and D once in a while as needed!

I can eat the Walmart brand raisins & prunes!

No deep frying etc either!

So no sugar, dairy, wheat, corn or other grains. I eat a little white rice. Lectins are also in tomatoes, peppers, potatoes, soybeans, dried beans, lentils,cashews, peanuts, diet sugars, canola , & corn oils.

Dark chocolate is okay once in a while with sweet fruits for me.

Canned foods as the plastic liner! Made me sick like I had prostate cancer! Very occasionally US canned salmon is my only cheating on that now!



I would start very simple first like that Dr. and I found it worked for me right off the bat. Adding beans and tomatoes, peppers so I realized didn't help me over the years.

Anyway maybe diet only may help you! You have to be Anal about it so I found out over the years as being cramped up sure hurts! Watch for processed rice as I have been really cramped up from it. The big bags of white Asian or US rice are good and Walmart 2 kg bags good so far.

And no Booze (maybe the best Vodka on the rocks later to celebrate!) or smoking etc.

Please feel free to ask questions! Almost 25 years drug free for me! I don't get the flue, colds etc either!
I am glad you have had success. Make sure a doctor is keeping watch on you.
03-10-2017, 08:06 PM   #18
shadowdog
 
Join Date: Mar 2017
Location: Manitoba
Thanks Ron,

Not saying my name as employer's may care! In the late 90's while downtown in the post office I ran into into the Dr. that first diagnosed me along with a few other's that treated me in later visits over a few years as mentioned and they couldn't believe how well I looked. I was of course asked what I was doing to be so healthy again and so I briefly told them and they said to keep it up!

I just thought after 25 years I'm healthy and have to pass this info on!

I think most people won't believe me in my experience that food can have so much affect! Nobody wants to give up their favorite foods and I know I had a heck of a time changing too!

I forgot to fully mention cutting out the Lectins (except small amount of white rice) has gotten rid of my acid reflux / gas/ indigestion and lack of energy lately I realized from eating more of them lately.

I also can't handle tap water either. I think it's what the chlorine does to the organics that upsets my gut. Spring well water is good and clean snow in the winter when I can't get the spring well water.

I think it's really good to also boil rice and water vigorously for 3 minutes to kill anything in the rice etc! The same with veggies!

My stomach ulcer came back really bad (really painful) 1.5 years ago and I discovered cayenne pepper (heard about it treating ailments on the radio) killed it off in a few days. I have a good dose every day as it works for a tooth ache too! Concentrated table salt (5 days) in water rinses helped the tooth at first.

Anyway I think it's worth a try after reading about that Dr. in Life mag and others since online.

I have to agree stress doesn't help but being sick stresses one out too. I think walking etc . can help for me anyway. I had a couple of dogs over the years to take on long walks as they were big.

I pass all medical tests as of a few years ago!

Last edited by shadowdog; 03-10-2017 at 09:23 PM.
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