To kick-off my column for IBD News Today, I’ll begin with the first of a four-part series about Crohn’s disease basics from my point of view and my experiences. I’d like to talk about the signs and symptoms of Crohn’s disease, receiving your IBD diagnosis and how I dealt with that news, as well as the medications I’ve tried, and, all that goes with these crappy topics.
Before my diagnosis, I was like anyone else, oblivious to things I didn’t know existed. I found numerous differential diagnoses and things that “could be” causing problems, leaving my symptoms and issues a mystery to me and my medical team.
When people ask “What happened?” or “How did your Crohn’s start?” I stay 100% honest and tell them I was seeing blood when I went to the bathroom. It began suddenly and, truth be told, it was scary. Something was wrong and any symptoms before this went unnoticed. I thought I suffered from hemorrhoids, but there was never any pain, at least not in the beginning.
Not everyone will suffer the same symptoms as me, and I am not here to diagnose anyone else. These are just my personal experiences within my Crohn’s journey. To be fair, I have not had the worst luck with my disease thus far. Others have had much harder struggles and their Crohn’s is much worse than mine, hence my column’s title, It Could Be Worse. I think of all the warriors and I wish them luck.
The symptoms I suffered from came on suddenly, and they continue to worsen to this day. As previously mentioned, I began seeing blood in the toilet, alternating from black blood (older blood, upper GI blood), to red blood (newer blood, lower GI blood), and sometimes there would be a jelly-like substance (normal within the bowel to help lubrication.) I also began to suffer from diarrhea (a Type 6/7 on the Bristol Stool Chart.) My Crohn’s, well, it causes me severe, chronic, painful diarrhea. Every. Single. Day. For. 3. Years.
Before this, I never had bathroom issues. I ate what I wanted. I drank often. I took NSAIDS for repeat migraines and I smoked cigarettes. (A BIG NO-NO with Crohn’s.) I stopped both, of course. I had no symptoms until Crohn’s suddenly took over my life.
After the bleeding began, I had a perianal abscess develop with an “Indolent Fissure” that led to an ER visit, and emergency surgery on my bottom, six weeks recovery time. Then, I had to have it cut open again in the same place (that’s where the fissure was), which led to my two butt-hole surgeries at 11 o’clock, respectively. Another six weeks to heal and numerous sitz baths followed.
I’ve had recurring bouts of body pains, allodynia. I have open skin sores that won’t go away. I remain slightly feverish, but I’m constantly cold. I have a reduced appetite that can be blamed on vomiting everything I seem to eat. (I’ve been puking since August.)
Other signs or symptoms of this fun disease? Mouth sores. Fatigue. Weight loss. Abdominal tenderness and cramping. Skin lesions. Painsomnia. (What’s that? Pain + Insomnia.) Ulcers in your stomach and intestines. Painful rectum. (I keep baby wipes handy.)
Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.
Thanks for sharing your story. You can find some comfort in others going through the same journey. Keep fighting, you are a true warrior.
Thank you for reading and reaching out! I hope you have found relief!
I feel like this is extremely similar to what I’m experiencing in several ways. I’ve had what I would call a “sensitive” stomach for most of my adult life, but starting around Thanksgiving of last year it kicked into overdrive. Fast forward to February of this year, at 34, I had to have a colonoscopy and an endoscopy. The doc said all he found was some inflammation here and there but all the tests he did came back normal. He said it was probably just a rather severe case of IBS-D. Well, about 2 months later I was seeing my regular doctor for something unrelated, or so I thought. The corners of my mouth kept cracking open for days on end for no real reason. They did some labs and said I’m folic acid deficient, which they claimed is u usual for someone that either doesn’t drink a lot of alcohol, or isn’t pregnant. I don’t drink much and I’m a guy, so… But, my stomach had calmed down substantially so I didn’t think there was any connection. Now, it’s back at it, and this time I’ve started developing ulcers in my mouth/on my tongue at the same time. Plus, the general lack of energy yet the inability to get a good night’s sleep. Add in the severe stomach pain and diarrhea, sometimes several times a day… All of these things together are making me think k Crohn’s is likely. I’ve got an appointment with my primary doc again in another 2 weeks and I’m going to bring it up.
Excuse the typos. New phone likes to sneak extra letters in between words sometimes and I type too fast to catch most of them.
Its okay! I just read it all. It took a capsule endoscopy to look at my small bowel before they ever found inflammation. I would highly suggest getting one if you are questioning it. I know the feeling of not knowing or stressing and wondering what’s wrong. I am so sorry you’ve been struggling and I hope you get it all figured out. Hopefully no Crohn’s or IBD but I do hope you find relief.
Mary,
I hope you are in a better spot now. I have never been diagnosed with Crohn’s but have had a sensitive digestive system for the last 10 years. Experienced a lot of agitated nerve endings in the abdomen. I tried a product and it helped me reduce the severity after a few weeks. Google Molo-Cure AMP. I don’t have any stock in the company, but it helped me. Good Luck!
Hey Chris I am experiencing something like that too…can you tell me what is it? Did you found out?