I have read every post in this forum as I was very lost at the start of my MC journey and thought 2 years post diagnosis it was time to share my remission story.
I was diagnosed with Collagenous Colitis in late May of 2021 as a 29 year old female, 1 month after having COVID and 6 months after having my first child. I am in Australia and very lucky to have access to private health and integrative practitioners.
I was lucky to be diagnosed only 6 weeks after my symptoms started as I had a routine colonoscopy booked. I could be considered a success story as I have been in remission since I stopped my 3 month course of budesonide in November, 2021. I would like to share my story to share hope for others but also to get some further answers/clarification if possible!
I started getting abdominal cramps, intense pain, fever and nausea after I would eat my meals, particularly those with gluten or dairy. Then after a couple of weeks, the urgency came. I had diarrhea any time I would eat. So I basically stopped eating as I became so scared. I had to prepare for the colonoscopy that was checking in on previously removed polyps. The prep made me incredibly sick. I unfortunately had to have 2 colonoscopies in the space of 4 weeks. The second one was specialised polyp removal and when they diagnosed me with Collagenous Colitis.
My health background - I reacted to heat since I was 7 breaking out in hive rashes, I had glandular fever when I was 17 which took me a year to recover where my spleen was close to rupturing and I turned jaundice, I was then diagnosed with anemia and have dealt with severe anemia (I cannot product iron, nor can I store it, I am also allergic to iron infusions) the past 11 years, but despite those, I have gone 110% the past 10 years. I was healthy and physically active in every other aspect! So this diagnosis shocked me to the core.
COLITIS JOURNEY
Post diagnosis, my GI said “Food won’t matter, just don’t eat spicy food and let me know when you need another script for budesonide”. I had no idea where to start and thought “why wouldn’t food matter?”. I found this forum very early on and read basically every post, among the tears, I thought my life was over.
So this is what I did:
PHASE 1
- 3mg budesonide x 3 per day whilst eating only basmati rice, zucchini (no skin), chicken and coconut for 1 month.
3mg budesonide x 2 per day whilst eating only basmati rice, zucchini (no skin), chicken and coconut for 1 month.
3mg budesonide SLOW WEAN for 6 weeks so 1 every second day, then every third day until it was 1 per 5 days eating only basmati rice, zucchini (no skin), chicken and coconut for 1 month. Completing this in November. No symptoms.
Started seeing an integrative practitioner and did a stool test before providing a course of treatment. These were the stand out markers:
Calprotectin: <5.0
Faecal Secretory IgA: 370.2 L (low)
Bacteria/Virus present:
Enterococcus faecium
Morganella species
Methanobacteriaceae
Low Normal Gut Bacteria:
Bifidobacterium species 6.3 *L
Bifidobacterium longum 2.1 *L
Lactobacillus species 6.2 *L
Lactobacillus Rhamnosus 2.0 *L
Akkermansia muciniphila <dl *L
Short Chain Fatty Acids, Beneficial 11.4 *L
Butyrate 6.4 *L
- Continued with a limited diet (Rice, Chicken, Zucchini, Coconut, Carrot) for 2 months whilst starting a natural treatment of dysbiosis to treat several opportunistic infections, low gut immunity and very low beneficial health promoting bacteria. At the same time, I introduced Vitamin D supplementation and Glutagenics (L-Glutamine and Boswellia). Kept it very simple for 2 months. I unfortunately lost a lot of weight purely from diet and restriction.
After I had finished the dysbiosis treatment, I began a slow introduction of a prebiotic in addition to my glutagenics and vitamin D. We did not add a lot.
I then began the slow introduction of foods. *The longer I had healed, the more I found some foods that initially did not agree with me, began to be fine.
My integrative doctor, after explaining a lot of my symptoms and history straight away, thought it was triggered by inflammation from an untreated histamine intolerance. After food experimentation and symptoms, we soon discovered that histamine was the key driver. I followed an introduction of foods that were low in histamine.
I have introduced a total of 114 foods back into my diet (Vegetables, Fruit, Spices, Proteins, Grains + Misc) but continue to stay Gluten Free and Dairy Free, nothing bought off the shelf. I cook everything from scratch.
Stress is a key contributor for me as the only time I have experienced diarrhea again in the past 2 years is when I was incredibly stressed. I go back to my simple diet straight away.
I use a DAO enzyme to help combat any histamine symptoms and follow a low histamine diet. I am particular with the products I use and definitely see my hives react in Spring.
My questions are:
- I found remissions by using budesonide (swearing to never use it again) whilst following the suggestions from this forum for the first stage. Finding remission quickly, does that mean perhaps my MC wasn’t so developed?
Is it very possible that years of histamine intolerance caused chronic inflammation leading to MC? *Never taken NSAIDs, smoker etc.
My family has auto-immune (r-arthritis, psoriasis) - Could autoimmune play a factor here?
Do you think COVID was the final trigger?
How do TH1 and TH2 immune cells contribute to colitis?
I can eat iceberg lettuce (any lettuce), I can eat sun-dried tomatoes, lemon juice and citric acids, I can eat eggs, onion and garlic, raw fruit and vegetables, why? I don’t react at all.
I live free of nausea, abdominal pain, diarrhea (I have a perfect stool now) and have found a healthy weight again. I get to live a normal life (albeit without some food), I have the ability to play with my daughter, go to work in a Senior position 5 days a week, go to the gym, be a wife, and all that beats any taste of a food.
I will never forget reading this forum when I felt like my life had ended with this diagnosis reading "It can take 2 - 5 years to heal the gut lining” and thinking, I can either start now or in 2 years wish I had started. So I just started. No one understood what I was going through, I lost my social life but my goal was to never not be able to look after my child. She was my motivation and that motivation, each minute, each day, gave me the will.
For me, it was consistency. Showing up day by day. And two years later, I am so grateful I just started. Thank you to this forum for providing hope and information when I felt so lost.
