Colitis

lynde89

Well-Known Member
Messages
95
Hi,

Just wondering if anyone else suffers with this?

I have had it since I was young but after not being well on & off, sickness, stomach upsets, nausea, vomiting, tiredness (which of course have been affecting the BS as well!) I have been referred to the gastroenterologist at the hospital as they think it's the colitis coming into play again.

I'm still not 100% sure what it is, was just told I had it when I was a kid, then it kind if faded into the background.......:/.

Does anyone else have this? Or any advice etc? I only know a bit of what I have googled. Hopefully I will know more when I get referred.

Thanks!


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Thundercat

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Messages
2,406
Type of diabetes
Type 1
Treatment type
Insulin
Sorry about empty post - hit submit by accident!

My sister has had colitis for 10 years and for the first 4 suffered very badly and was admitted to hospital on a number of occasions. She was told to avoid pork, spinach, dried fruit and herbal teas and drinks made from dried fruit. 6 years ago she had allergy tests done and after giving up the foods she was sensitive to her colitis has settled down completely. Her consultant is very sceptical about alternative treatments but is so amazed by the difference has told her to keep doing what she's doing. I hope all goes well for you and that you get things sorted quickly

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pickledpepper2

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Messages
129
My brother has had an Ulcerative Colitis since his teens and is now in his 40s. Although it can flare up now and then (mostly due to stress from what I can see - he is in a stressful job), he seems to keep it under control through careful diet. I think it may help to find out what aggravates the ulcer through trial and error and adapt accordingly.
 

lynde89

Well-Known Member
Messages
95
Thank you for the replies!

I think diet seems to be the main cause, & I guess different foods affect different people. I just need to find out what is causing mine! I have noticed a like between things like bread, & then getting stomach cramps etc the next day, so will make sure that I mention that when the appointment comes round.

I was diagnosed as a child, towards the end of primary school, but only really saw someone for a year or so then I stopped getting appointments.

Do you know if they take any other medications for it? Or if its mainly diet controlled?

I just hope that this is what has been making me ill & not something else, so I finally have an answer.

Thank you again!


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lynde89

Well-Known Member
Messages
95
Stress could be another trigger to I guess! Stressful being ill without much warning, missing work & of course having my diabetes knocked out if wack! Work is pretty stressful at the moment too, but don't see that changing for a while :eek:(.


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pickledpepper2

Well-Known Member
Messages
129
I recall my brother mentioning 'sugars' and spicy food as particularly aggravating, so you might want to keep an eye on them.

Also, grainy stuff like certain seeds might antagonise the intestine?
 

Winnie53

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2,374
Type of diabetes
Type 2
Treatment type
Diet only
Thanks Indy :)

Hi,

Just wondering if anyone else suffers with this?

I have had it since I was young but after not being well on & off, sickness, stomach upsets, nausea, vomiting, tiredness (which of course have been affecting the BS as well!) I have been referred to the gastroenterologist at the hospital as they think it's the colitis coming into play again.

I'm still not 100% sure what it is, was just told I had it when I was a kid, then it kind if faded into the background.......:/.

Does anyone else have this? Or any advice etc? I only know a bit of what I have googled. Hopefully I will know more when I get referred.

Thanks!


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@lynde89 as with diabetes, diet will make you better, drugs without diet will make you sicker. Ulcerative colitis runs in my family. Both my father and his sister had it. Both died of cancer in their 60's, I believe, because of it.

15 years ago I had my first, possibly second, flare, (and last year, after having been in remission for 15 years, I had another flare that lasted 9 months).

At the time, my gastroenterologist told me there was a diet that had worked for a few of his patients, but most wouldn't try it. That diet changed the course of my life. Today I use the Specific Carbohydrate Diet, described in the book, Breaking the Vicious Cycle by Elaine Gottschall, B.A., M.Sc., also described on her website... http://www.breakingtheviciouscycle.info/ Click on the "Legal / Illegal List in the left column to learn more.

I also use the low carbohydrate ketogenic diet. I've been in remission again for 6 months.

Another way to learn about the diet is to listen to Elaine Gottschall's story of how she healed her daughter... [It's going to take me a few days to find it, I will. Promise. It's an incredible story.]

For now, here is a lecture from 10 years ago by Pam Ferro, R.N. who has continued Elaine Gottschall's work on behalf of children who have autism...

Part I...

Part II...

This more recent presentation by Pam Ferro, R.N., in 2015 perhaps, likely will provide more details...


In addition, there are two other websites I regularly visited while following the Specific Carbohydrate Diet...

http://www.ihaveuc.com/
http://scdlifestyle.com/about-the-scd-diet/

In a few days, I'll explain how I triggered my last flare, and how I got myself back into remission. Be patient. I'm really busy for the next few days. :)
 
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Winnie53

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Type of diabetes
Type 2
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I responded to this three year old thread last year, but was unable to find the Elaine Gottschall interview that told her family's story of how the Specific Carbohydrate Diet (SCD) restored her 8 year old daughter's health after years of suffering with ulcerative colitis.

Tonight I found two articles written by Elaine in 2004 - (she passed away the following year at age 84):

ELAINE GOTTSCHALL AND THE SPECIFIC CARBOHYDRATE DIET: How It All Began by: Elaine Gottschall, Consumer Health, Volume 27, Issue 1, January 2004
http://www.consumerhealth.org/articles/display.cfm?ID=20060228173516

THE GUT/BRAIN/FOOD CONNECTION: THE SPECIFIC CARBOHYDRATE DIET (SCD) by: Elaine Gottschall, MSc, Consumer Health, Volume 27, Issue 9, September 2004
http://www.consumerhealth.org/articles/display.cfm?ID=20060301174333

As I posted earlier, the diet is explained in her book, Breaking the Vicious Cycle, also on her on her website, http://www.breakingtheviciouscycle.info/

The best three videos I've found with Elaine Gottschall are located on her website here... http://www.breakingtheviciouscycle.info/video/listing/ (Still looking for the longer interviews with Elaine that I watched in 2015. Will keep looking.)

In the first video, Elaine is being interviewed by Wilma Phend, who celebrated her health store's 35th year of operation a little more than a week ago in Churubusco, Indiana... http://busconews.com/local-health-shop-celebrates-35-years-in-business/ The second and third videos include a picture of Elaine's two adult daughters. Her daughter Judy narrates and shares what it was like for her as a young child during her illness.

Since Elaine's passing, others have carried on her work:

Pam Ferro, R.N., who you may have listened to in the above posted videos, teaches the SCD and authored a book with Raman Prasad on the diet, The SCD for Autism and ADHD: A Reference and Dairy-Free Cookbook for the Specific Carbohydrate Diet (2015). Her co-author, Raman Prasad maintains a website here... http://www.scdrecipe.com/ and a blog here... http://blog.scdrecipe.com/ He received his B.S. from Cornell University in 1994, and M.Sc. from Rensselaer Polytechnic Institute in 1999.

Here is his story from Raman's book Colitis & Me: A Story of Recovery (2003)...

Fourteen years ago, at age 17, a gastroenterologist diagnosed me with ulcerative colitis. Over seven years my health steadily deteriorated resulting in hospital stays, a bloodied intestine, heavy steroids, poor spirits, and probable surgery. Fortunately, I came across Elaine Gottschall's book Breaking the Vicious Cycle which painstakingly describes a Specific Carbohydrate Diet (SCD), and the science behind it, for putting inflammatory bowel disease (IBD), celiac disease, and diverticulitis in remission.

After a year of following the diet described in the book I was able to taper off of medications and found my strength returning. The SCD became habit and, although I still subscribed to an e-mail list for others using the diet, ulcerative colitis steadily fell from the forefront of my life. In the second year on the diet I went back to school at night, finished a graduate degree, and plunged forward. and didn't look back. Similar to many people who joined the e-mail list, my initial period of excitement, marked by e-mailing many questions and telling my doctor about the diet, was followed by simply living my life and occasionally reading the e-mail to answer questions asked by others. I wanted to forget most of my experiences during ages 17 through 24.

Today, facing the options of forgetting or doing something positive, I started writing a two page narrative of my experience with ulcerative colitis. Those two pages turned into this book. Luckily, my recovery is not unique, it has been experienced by hundreds of others, of all ages and stages of IBD. However, the recovery should be shared with the hundreds of thousands whose lives continue to revolve around their personal struggles with IBD.

I put my story forward as a small step in assistance of others.


Natasha Campbell-McBride, author of Gut and Psychology Syndrome has a website here... http://www.doctor-natasha.com/index.php and a blog here... http://www.doctor-natasha.com/blog.php Her diet, referred to as the GAPS diet, is similar to SCD but adds bone broth and fermented vegetables.

I spent a lot of time on these two websites in 2015...

http://www.ihaveuc.com/
http://scdlifestyle.com/about-the-scd-diet/

I have had two significant IBD flares, one in 1999, the other in 2015.

After looking at the SCD legal and illegal food lists again today, I believe the first flare was caused by eating fish, oysters, and fries - (all cooked in a deep fryer) - five days a week. After I began having symptoms, I switched to eating grilled hamburger or chicken and a potato with butter. At the time I didn't know that the potato was an illegal food because I didn't know about the SCD yet. After my colonoscopy, which confirmed that I was in the early stages of developing inflammatory bowel disease (IBS), my gastroenterologist encouraged me to read Elaine Gottschall's book and to give the diet a try. He said most patients weren't interested in trying it or they become frustrated learning how to do it and give up, but two did and got good results. In the months that followed, I ate a lot of vegetable soup made from scratch. I considered it my healing food, and my symptoms began to remit.

Two or three years after that, I had a second colonoscopy and other than finding a polyp, my colon was healthy.

In 2015, my type 2 diabetes got significantly worse and I learned about and started the low carbohydrate ketogenic diet. I missed eating bread so learned how to make flaxseed buns. Within three weeks I experienced my second flare which lasted 9 months. When I reviewed the SCD, I discovered that flaxseed is an illegal food, and I'd been eating two tablespoons of ground flax a day for the entire three weeks.

I went back on the SCD, but looking back, I don't think I was completely following it. After nine months I began to worry that I had colon cancer so scheduled an emergency colonoscopy. No cancer, thankfully, but my gastroenterologist informed me that my colon was very red and inflamed. By that time, I was following the SCD more carefully. Within a week of the colonoscopy, I was back in remission. I'm going to speculate that the colonoscopy prep purged the bacterial/yeast overgrowth. Next time I'll fast for a few days instead and see if that works. I'm still paying off the bill for that colonoscopy. :)

Last week, I began having symptoms that suggested I might be developing another flare. Looking back, I think it may have been caused by eating sweet potato fries at a restaurant - (a rare treat; I thoroughly enjoyed them) - and two chocolates, also a forbidden food for me. The symptoms continued for a few more days, so I started being very careful about what I was eating. After a week of that, my symptoms completely remitted. SCD works well for me.

It really helps that I don't eat gluten, grains, or soy anymore, though I still eat hard cheeses. I have a friend who's struggling with IBD right now. I ordered Pamela Ferro's and Raman Prasad's most recent book, also Prasad's earlier book, Colitis & Me. Both have excellent Amazon reviews. Perhaps they'll be helpful for my friend. Looking forward to surveying the first book and reading the latter book.

To anyone reading this, the SCD is worth trying. Inflammatory Bowel Disease, Crohn's and Ulcerative Colitis are incredibly difficult conditions to manage because while the medications manage the symptoms, they don't treat the root cause, the diet. Don't misunderstand, this condition is genetic as evidenced by my family.

When I first learned how to do the Specific Carbohydrate Diet, and didn't do it correctly, I was able to achieve remission, likely because the disease hadn't progressed far into my colon.

I believe it's never too late to heal the colon. Elaine's daughter Judy, after using the SCD diet for 7 years, was able to return to eating all foods except rice. Now in her 60's, she continues to enjoy good health. If anyone has questions or needs encouragement, please contact me. :)
 
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Rose88

Well-Known Member
Messages
103
Type of diabetes
Type 2
@Winnie53 Thank you for taking the time for the very detailed posts above, I shall digest them over the next few days when I'll have more time and get back to you soon.
 

Winnie53

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2,374
Type of diabetes
Type 2
Treatment type
Diet only
Wow, need a place to save this blog post - (go here for the original blog post... http://blog.scdrecipe.com/blog/2014/3/27/gut-bacteria-involved-with-crohns )

Gut Bacteria and Crohn's: It's Official (447 Patients)
March 27, 2014
in med- journals, crohns/colitis


source: The Treatment-Naive Microbiome in New-Onset Crohn's Disease

****! In the dark ages of IBD, doctors believed that stress was a key factor in disease control and said that my diet of 80% processed complex carbs was fine. When exercise, sleep, and "relaxation" didn't seem to help, I took "extra measures." By some convoluted logic born out of a fermenting gut I thought working in an Alaskan cannery for the summer (with active IBD) would be a good idea. The extra stress would somehow make the IBD go away . . . but it was really about the intestinal bacteria.

A Harvard-led study released in March examined the intestinal bacteria of 447 children newly diagnosed with Crohn's disease (CD). These children had not yet received Crohn's specific treatment. Compared with 221 health control subjects, the study found:

  • The intestinal bacteria of the CD children was unbalanced, with pathogenic bacteria flourishing
  • The CD children had less diverse intestinal bacteria
  • The imbalance of intestinal bacteria related disease severity: the greater the imbalance, the worse the symptoms.
  • Antibiotic exposure "amplifies" the imbalance of intestinal bacteria. (57 of the 447 children were on antibiotics)
  • Compared to tissue samples, stool samples had low accuracy for reflecting the state of intestinal bacteria
The study included a large sample size drawn from 28 North American GI centers--making it the most statistically relevant study of its kind.

<img src="https://static1.squarespace.com/static/51d1d05fe4b05d425c867eb7/t/533405a3e4b097e4d9d5c051/1395918253293/cover-of-cell" alt="cover-of-cell" />
Gevers, D., Kugathasan, S., Denson, L. a, Vázquez-Baeza, Y., Van Treuren, W., Ren, B., … Xavier, R. J. (2014). The treatment-naive microbiome in new-onset Crohn’s disease. Cell Host & Microbe, 15(3), 382–92. doi:10.1016/j.chom.2014.02.005
 
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Winnie53

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Type of diabetes
Type 2
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Diet only
More hope and encouragement - (to see pictures go to original blog post here... http://blog.scdrecipe.com/blog/2015...e-colitis-with-the-specific-carbohydrate-diet )...

Medical Journal: Resolution of Severe Ulcerative Colitis with the Specific Carbohydrate Diet
August 11, 2015



Report from Omaha, Nebraska...

The August volume of Case Reports in Gastroenterology includes an article on a 73-year-old female physician with ulcerative colitis who recovered on the SCD.

The case report is notable for diagnostic images taken before and after the SCD. The before photos show active inflammation while the after SCD photos show no sign of inflammation. In addition, biopsies confirmed both the UC diagnosis and subsequent remission.

Fig. 1. Terminal ileum (a, b) and cecum (c). Endoscopic photographs of the sigmoid and left side of the colon demonstrating active mucosal inflammation taken prior to institution of the SCD in December 2010, following 1 year of an acute exacerbation of UC in a 73-year-old patient. Pancolitis was noted on complete colonoscopy.

" data-lightbox-theme=""><img src="https://static1.squarespace.com/sta...39f6e4b0f1ce532ab87b/1439316470976/before-scd" alt="Fig. 1. Terminal ileum (a, b) and cecum (c). Endoscopic photographs of the sigmoid and left side of the colon demonstrating active mucosal inflammation taken prior to institution of the SCD in December 2010, following 1 year of an acute exacerbation of UC in a 73-year-old patient. Pancolitis was noted on complete colonoscopy." />

[Pictures deleted]

Fig. 1. Terminal ileum (a, b) and cecum (c). Endoscopic photographs of the sigmoid and left side of the colon demonstrating active mucosal inflammation taken prior to institution of the SCD in December 2010, following 1 year of an acute exacerbation of UC in a 73-year-old patient. Pancolitis was noted on complete colonoscopy.

Fig. 2. Terminal ileum (a, b) and cecum (c) demonstrating normal colonic mucosa with no inflammation after 2 years of the SCD (December 2012). Complete colonoscopy confirmed resolution in all segments of the colon.

" data-lightbox-theme=""><img src="https://static1.squarespace.com/sta...eb7/t/55ca3a54e4b0364641ea2835/1439316565330/" alt="Fig. 2. Terminal ileum (a, b) and cecum (c) demonstrating normal colonic mucosa with no inflammation after 2 years of the SCD (December 2012). Complete colonoscopy confirmed resolution in all segments of the colon." />

[Pictures deleted]

Fig. 2. Terminal ileum (a, b) and cecum (c) demonstrating normal colonic mucosa with no inflammation after 2 years of the SCD (December 2012). Complete colonoscopy confirmed resolution in all segments of the colon.

The details are as follows:

Diagnosis of UC, Relative stability
  • 1997 - While in her early 40s, the patient experienced abdominal pain and rectal bleeding. After a colonoscopy, she was diagnosed with ulcerative colitis.
  • 1997 to mid-2009 - After 6 weeks of Asacol (mesalamine), she was relatively stable for the next 12 years.
Pain Returns, Drugs don't help, Unable to Work
  • Winter 2009 - The patient experienced intermittent burning and shooting pain in the left lower abdomen. Occasional pain also occurred in the right abdomen.
  • 2010 - The pain continued. Loose stools and rectal bleeding worsened over the next year. Her appetite decreased.
    • She consulted various gastroenterologists
    • Treatment with steroids and mesalamine failed to alleviate the symptoms.
  • December 2010 - Experiencing constant abdominal pain and unremitting bloody diarrhea, she was unable to work.
    • A colonoscopy showed mild to moderate UC with inflammation throughout the colon. Biopsies confirmed the UC diagnosis.
    • The "colonic mucosa revealed friability, multiple tiny ulcers and mucosa edema".
SCD Started, Health Improves
“a remarkable absence of any inflammation”
  • Winter 2010 (December) - The SCD was started.
    • Within 3-6 months, she went to the bathroom less often, the abdominal pain resolved, and blood no longer showed in the stools.
    • In 6 months, she returned to normal activities--including work as a physician.
    • Anemia resolved, with hemoglobin returning to a normal range.
    • All symptoms dissipated over the next 18 months.
  • December 2012 - An endoscopy showed "a remarkable absence of any inflammation". Biopsies confirmed the remission of ulcerative colitis with no inflammation present.
The authors of the report note:

We report complete healing of UC in a patient who had failed conventional therapies within a 2-year period. The use of the SCD for UC in patients who are able to make sustainable dietary changes should be considered more often.

citation: Khandalavala, B. N., & Nirmalraj, M. C. (2015). Resolution of Severe Ulcerative Colitis with the Specific Carbohydrate Diet. Case Reports in Gastroenterology, 3075, 291–295. doi:10.1159/000438745
 

Winnie53

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Type of diabetes
Type 2
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And one more - (go to original blog post here... http://blog.scdrecipe.com/blog/2015...-patientsremission-rush-university-in-chicago )

SCD Case Study of 50 Patients/Remission (Rush University in Chicago)
July 24, 2015



The Journal of the Academy of Nutrition and Dietetics has just published a case study of 50 Crohn's Disease (CD) and ulcerative colitis (UC) patients on the SCD. This is the largest case study of SCD patients so far. Here are the highlights:

<img src="https://static1.squarespace.com/sta...eb7/t/55b2eea8e4b0b91cd3d7d99c/1437789922871/" />
1437789922871

  • The patients had their IBD diagnoses confirmed
  • All patients were in remission
  • Average age 36, range was from 10 to 66
  • "Real-world" conditions with patients regarding medications and compliance.
    • 36 patients with CD; 19 with no meds
    • 9 patients UC; 1 patient no meds
    • 5 patients indeterminate disease (couldn't tell if CD or UC); 2 patients no meds
  • Medications dropped. Of the 22 people on no meds who remained in remission:
    • 16 had discontinued steroids
    • 3 had stopped TNF inhibitors (which include Remicade, Humira, etc)
    • 5 had been on 6-MP
  • See the full study for details on current medications (includes over a dozen people using mesalamine)
The study's authors conclude that:

We now show that at least a subgroup of patients with IBD may notably improve as a result of following the SCD and/or dietary interventions in general. [emphasis added]

In addition, they write:

... this may be a low-cost intervention to induce and maintain remission with little or no known adverse reactions. As such, further interventional studies of SCD and diet therapies in general for IBD are urgently needed. [emphasis added]


Kakodkar, S., Farooqui, A. J., Mikolaitis, S. L., & Mutlu, E. a. (2015). The Specific Carbohydrate Diet for Inflammatory Bowel Disease: A Case Series. Journal of the Academy of Nutrition and Dietetics, 115(8), 1226–1232. doi:10.1016/j.jand.2015.04.016

<img src="https://static1.squarespace.com/static/51d1d05fe4b05d425c867eb7/t/55b2efb5e4b0fb4372092e59/1437790133939/" />
 

Rose88

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Messages
103
Type of diabetes
Type 2
I'm still in the trial and error stage of IBD. Some of my trigger foods are anything spicy, sweetcorn, most salad, any raw vegetables, hard cold cheese, I can sometimes tolerate small amounts of cheese if its heated say in a vegetable bake but no more cheese and salad sandwiches! Nuts and seeds must be thoroughly ground before eating. As a diabetic, vegetarian, with IBS and IBD food is an enemy but I'm hoping to find a happy place somewhere! :)
 

Winnie53

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@Rose88 it's quite the learning curve isn't it? It's helpful figuring out which foods are problematic. For me it's industrial seed oils, gluten, coffee, chocolate, and flaxseed. I'm sure there are other things too.

I had difficulty accessing the forum today, not sure why. Leaving the house for a good 6 hours or so. Will try to send you a private message when I get back. I did a little research on online resources this morning. It would help to know which country you live in. I live in the USA in a region referred to as the Pacific Northwest. Time zone wise, I'm 8 hours earlier here than the UK. :)
 
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