Community Forum

At the beginning of 2018 I had a colonoscopy to find out where in my GI tract I was bleeding and why.  I guess I had my first flare Summer 2017.  After the colonoscopy I was diagnosed with proctitis.  I was prescribed CortEnemas for a month, responded very quickly and positively and crossed my fingers that the next time I saw the gastroenterologist would be 10 years down the road at my first Colonoscopy Cancer Screening.  I had what appeared to be a day-long flare up about a month later and again, moved on.  Then, March 2019, I had another flare.  It took me a month to reach out to my doctor......I was placed on the CortEnemas again.  Within the first few days, I SEEMED to respond.  I saw the Gastroenterologist's Nurse Practioner and she told me I had IBD.  It's now been about 2 weeks that I've been on the medication.  However, my response to the medication has gone the opposite way.  After a few more days on the medication, my symptoms came back.  The theory is, the inflammation has moved somewhere else (relative to where they found the inflammation last year) and I should get another colonoscopy to see where it is.  The NP thinks the medication isn't reaching the inflammation.  I'm SO confused.  In comparing my symptoms  to what I've read, it seems that I am in the very beginning stages.  My symptoms are EXTREMELY MINIMAL (mucus and blood when I do have solid stool-which is everyday since I continue to drink coffee and that helps, feeling of needing to pass a BM but nothing there).  I BARELY have diarrhea and cramping, the bathroom is not consuming my life at all, and the more I limit my diet to get the healing process underway, the more miserably hungry I am, and it seems the worse my symptoms become!  I would love to hear from anyone with ANY INSIGHT!!  

Reply posted for Qurlypuff.

I understand the battle. I was diagnosed with Ulcerative Colitis at 14yo and suffered for 10 years with GI doctors that never explained how to heal or improve. I became a naturopathic doctor and learned how to heal and stay in remission. I have been medicine free for 10 years and did not have surgery because of natural medicine. First intervention is diet: remove common food allergens corn, wheat, gluten, dairy, eggs, potatoes. Avoid carageenan in milks and foods. Avoid sugar! L-glutamine, probiotics, omega 3, Vitamin C and E can all help. Castor oil on tummy every night with heating pad can help restore structural integrity. Exercise 3x per week to keep things moving and improve immune system. Find a holistic, naturopathic doctor. They will teach you how to improve your health and stay in remission. Hope this helps :)

Reply posted for djwemlcc.

Hi.  I've been through a lot since I posted last.  After expressing to the NP and Nurse that I was absolutely miserable, they took some tests (fecal and blood) and then put me on 40 mgs of Prednizone.  After fiddling with my diet and getting some insight from the nurse, I am on a "bland" diet and trying to have about 30 mgs of low fiber foods a day so that I can actually have solid stools.  This seems to be working, but my taste buds are still SO SAD that I'm limited in my diet.  I just had a second colonoscopy and the Gastro Doc found that the IBD has extended into my sigmoid.  Last year it was just in my lower rectum.  He stated that I would be weened off the prednizone and put on a mesalamine (an ASA?)  medication.

Foodwise, I'm sticking to Fruits: applesauce, bananas, watermelon and canteloupe; veggies: cooked carrots, cooked green beans, and cooked peas (I might add potatoes); protein: tofu, pasta, fish, dairy, eggs, oatmeal; sweets: milk chocolate, graham crackers, sometimes vanilla ice cream, muffins; and drinks: water, milk, coffee-weening myself off of coffee, ginger ale.  I've discovered that I should steer clear of yummy toppings like blackened fish and black pepper, candy and chocolates that have more than milk chocolate or most definitely dark chocolate (my favorite) and ALCOHOL.  I have looked up on Google what a "bland" diet might look like and have found some beneficial websites.  I basically try to stick to those foods that are recommended and stay away from the ones that can cause inflammation.  Sometimes I mess up (like eating the dark chocolate or adding black pepper to things) and then look it up and discover that that can inflame the colon....and then I wait a few days for my colon to get back to recuperating and move on......I can't BELIEVE I'm still in a flare.....I'm just stunned that after all the cort enemas and now 3 weeks on prednizone (2 weeks at 40mgs, a week at 30, and now 20), I'm not magically healed like I was last year.....all I want is to have a normal diet back!!!

Reply posted for Sally1206.

My Crohn's is in my terminal ileum (really common).
That's pain in my lower right stomach area.

But I also have lots of other things: eczema (particularly on my upper wrists and back of my hands and my eyelids). General malaise/fatigue. Stool changes (all over the map).

The hard thing is when clinical markers and symptoms don't line up. Sometimes, the flare can actually be pretty severe clinically, but you have no symptoms to even know about it. Or symptoms can be raging, but there is no clinical evidence for a flare.

So the goal of treatment is two fold: clinical remission to restore the digestive tract and symptom management. And it is important to achieve both.

Reply posted for djwemlcc.

What does a flare feel like? I know it’s different for each person. I have not been diagnosed with Crohn’s yet but I’m having major swelling in my abdomen and butt area along with soreness in both areas. Are those flares? The swelling is not like regular bloat or swelling as it feels heavy too. Does anyone experience that? Oh, I also had a red rash in butt crack area last week when I swelling with no marks or sores or anything but it felt hot like a sunburn but went away in a few days. The only thing that does help my butt area is soaking in a hot bath. 

Reply posted for Qurlypuff.

Curious on how things have gone since you posted this. Any changes?
What are you doing with your diet to help with symptoms?

Diet is a finicky thing with IBD, and not always the most intuitive.