• 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.

Looking for Similar Stories, and Any Experience That Goes With Them

Hi Everyone,

Long Story:
I was diagnosed with Crohn's Disease in February 2014. I went in for a colonoscopy due to some perianal swelling and blood on the stool. Gastro determined there were segments colon which were very irritated and most likely the primary source of the bleeding. Additionally, noticed some irritation at the beginning of the small intestine (ileum?) and the segmentation of the irritation is what I believe led to the diagnosis of Crohn's disease as opposed to Ulcerative Colitis.

Since my diagnosis I have primarily been looking to diet as a solution and I started the SCD diet in late March. I can say with near certainty, the diet has made the bleeding go way down, but it is still present. As for the swelling, I now believe this was due to an abscess, as a fistula has since broken through and the swelling went away. The fistula oozes some each day, I would say somewhere around one teaspoon of clearish fluid with a hardly discernible amount of blood mixed in. The fluid also hardens similar to the way mucous does. Other than the blood in stool and the fistula I have no other regular symptoms. (I say regular because a couple days after colonoscopy had intense abdominal pains for a couple hours each day).

I have stuck mostly to the SCD diet, although after around 6 months on a strict diet, the bleeding never quite went away so I incorporated a few other items (including oatmeal) with no noticeable change in symptoms. I do lean towards diet and natural remedies as my primary source of treatment due to the little/no side effects, the (seemingly to me) low severity of my disease, and the low cost to try different remedies. Of course, I recognize the importance of medication and I will likely start on medication if I notice my condition progressively getting worse and/or natural alternatives have been exhausted.

Short Story:

Diagnosed with Crohn's Feb. 2014

Symptoms: Blood in Stool (usually a few streaks, not covered), thin stools, Perianal Fistula Leaking Clearish Liquid), and no abdominal pains.

Medication: None

Treatment: SCD Diet, Probiotics, L-Glutamine, Vitamin D


I would be very interested to hear from anyone with similar symptoms and the treatments/medications/lifestyle changes they have had success with. Also, feel free to chime in if you have any general advice as well, thanks in advance. I've been a lurker since my diagnosis in Feb 2014 and this site has been a phenomenal resource so I also want to say big thank you to the community as a whole for sharing your experiences here.
 

my little penguin

Moderator
Staff member
Since you have been doing scd have you had follow ups with a Gi for imaging scopes and bloodwork since extensive damage can be done without a lot of symptoms on the outside .
Some have success with scd or other diets but most use them to boost the meds they are already on.
Ds is on the partial en with crohns exclusive diet .
In addition to humira /mtx ( kids tend to have a more severe disease course them adults)
He was dx at age 7 and is now almost 12
 

Lady Organic

Moderator
Staff member
Hi and welcome. as much i am extremly enthousiastic about diet change and manipulation in a possible way to fight chronic inflammatory diseases, I believe that after such a long time of disease activity (over a year and a half in your case) not being fully resolved, its time for you to start on pharmaceutical treatment.
Without putting your disease in full remission, you put yourself at higher risk of possible short or long term complications (including bowel cancer) or extra-intestinal manifestations. I once played with fire not taking medication. I regret it and Im still paying the price today. Im stuck with chronic arthritis now, which for the first time ever started right after a flare, at year 10 after CD diagnosis.

Im thinking maybe you could be interested in enrolling in a clinical trial, the SSI vaccine. Look for it in the Book research and media section of the Forum. you can participate if you are canadian or american. here:
http://www.crohnsforum.com/showthread.php?t=60661
 
Thanks for the feedback! I haven't been back to the GI since my diagnosis. But I have been talking with my general doctor. It would appear I need to make another appointment. I have been avoiding it because of the high costs of medication and to see a specialist and my symptoms are tolerable. I knew more damage could be done, but I guess I expected to see symptoms of any more damage. Moreover, my GI was okay with exclusion diet but never really gave me a frequency which I should check back in. Will be making another appointment soon.
 

Lady Organic

Moderator
Staff member
Im glad to hear that.
some medications are less expensive than others.
Fecal calprotectine test (stool test) should be low cost and is a great monitor for colonic inflammation,
I do it 3 times a year for monitoring.
ask your GI about it and question him on a better fallow up. This is SO important for your future. a GI who is in favor of exclusion diet for crohn's disease without insisting for close monitoring is extremly unusual practice and I consider this poor medical practice. Consider finding another GI if this one doesnt sound more proactive and attentive to you.
 
Top