Ulcerative Colitis took my Colon
TW: Talking about bowel movements (for education), talk about organs and surgery
June 29 is the worst day of my life. After being constipated and not having a bowel movement for 2 weeks, I went to a local hospital and asked for a scan to make sure I didn’t have a bowel blockage. They did a CT scan and told I was severely constipated, don’t take any medications, just “drink water and walk.” I was mad because I have been drinking coffee and eating foods that help me go and they weren’t working. So I went home, my husband ordered me a pizza from down the street, and it helped me go. There was red and mucus in the toilet, and I brushed it off. I went again in the morning, and my normal bowel movements turned to diarrhea.
The diarrhea turned bloody and wouldn’t stop, giving me 20 bowel movements a day and waking me up in the middle of the night. Then one day, on June 29, after almost a week of dealing with this, my stomach ACHED. It felt like Wolverine ripped apart my stomach. I went to a different ER and they immediately admitted me. I was diagnosed with Toxic Megacolon, and Ulcerative Colitis.
We started oral steroids, oral UC medication and IV UC medications. Nothing would bring my inflammation down, so my colon had to come out. I was transferred to a bigger hospital then. My heart rate was high, and it was scaring my surgeon so we went into immediate surgery a few days after I got there. My large intestine had perfed, and my small intestine was stuck to my large intestine in 3 places. So, because of how bad it was, it has to come out, as well as 6-8” of my small intestine.
I spent about a month trying to learn to deal with the pain, and dealing with urinary issues (that I’m still dealing with). My right ureter had kinked and a little bit of inflammation was blocking my bladder, so I needed a nephrostomy tube placed.
It’s been 4 months since my surgery, and I’m now dealing with pelvic issues, interstitial cystitis, endometriosis, and chronic pain. I have to see so many specialists and next week will be getting the ureteral stent out of my ureter.
If you want to know what to look for, please let me know! I talk about my ostomy, ulcerative colitis, and all kinds of stuff on my TikTok, so I can do it here too!
#interstitialcystitis #ulcerativecolitis #ostomy #lemon8health #colostomy
Ulcerative colitis (UC) is a chronic inflammatory bowel disease that causes long-lasting inflammation and ulcers in the digestive tract, specifically the lining of the large intestine (colon) and rectum. In severe cases like this personal story, complications such as toxic megacolon can develop—a rare but life-threatening condition where the colon rapidly expands and becomes paralyzed, risking rupture. When medical treatments like steroids and immunosuppressants fail to control inflammation, surgical intervention becomes necessary, often involving colectomy (removal of the colon). Surgery to remove the colon (colectomy) is a major life change, often requiring an ostomy, which is an opening on the abdomen connected to a bag that collects waste. Adjusting to an ostomy bag involves both physical and emotional challenges, including learning new care routines and coping with body image changes. Many patients also experience complications post-surgery; in this story, a nephrostomy tube was needed due to urinary tract obstruction from inflammation, highlighting how interconnected pelvic organs are and how inflammation can affect urinary function. Additionally, chronic pelvic pain, interstitial cystitis, and endometriosis can be related or exacerbated after major intestinal surgery, requiring multidisciplinary care involving gastroenterologists, urologists, pain specialists, and gynecologists. Managing chronic pain and urinary symptoms often involves a combination of medication, physical therapy, and sometimes further interventions such as ureteral stent placement and removal. If you or someone you know is facing ulcerative colitis, it is important to recognize warning signs such as persistent diarrhea, blood or mucus in stool, abdominal pain, and severe constipation unrelieved by dietary changes or over-the-counter remedies. Early medical evaluation, including imaging and colonoscopy, can help prevent severe complications. Support groups and resources can also be invaluable in navigating the emotional toll of chronic illness and surgical recovery. This firsthand account reinforces the necessity of attentive medical follow-up and highlights the complexity of living with ulcerative colitis and related conditions. Sharing such personal experiences raises awareness and provides insight to others who may be facing similar health battles.
My heart goes out to you. I had to have an emergency surgery last year in August due to a perforated viscus but by the grace of God I’m still here and I’ve had my second surgery for a reversal. God bless you hun! #StayStrong #IUnderstandAsWell