Chronic Appendicitis —> Crohn’s?

When I was 12, I fell ill with the absolute most painful abdomen pain ever. It felt as if knives were scraping my insides, starting a my sternum and moving all the way down my intestines. My parents took me to the ER where I was just given pain medication. My next episode hit not long later. I was suggested to journal my food. After the third one, I had a barium uptake. No answers ever provided.

In HS, I remember being fearful of a loose bowel attack and how often I would have to go to the restroom and how to disguise it. Often, I would go numerous times before second period even began. I was always, always plagued with loose bowels and have always been underweight.

In college, this all continued, as did the painful abdominal episodes. They lasted about 8-12 hours and I would be so sore the next day that I could barely stand up straight. My only option for pain was opiates, but I hated the way they made me feel and they would then do the opposite and back me up.

The not-so-nice girls in college all accused me of being bulimic because I was so skinny and always had to go to the bathroom immediately after I ate.

I’ve also always suffered painful canker sores. And burning red ears.

After having two children, I still maintain that my abdominal episodes were almost worse than child labor.

For years, I was told it was IBS but not a single anti-spasmodic ever worked.

Finally, at 33, I went to the ER for an episode and they did a CT. My appendix was enlarged. I literally looked at the doctor and said, “Nope, I’ve had this my whole life and never once have they said appendix.”

15 hours later and the surgeon emerged for the OR complex. My appendix was slightly enlarged but no where near the CT imaging. He said if I never got that pain again, it was chronic appendicitis.

The episodes never returned, but my loose bowels, cramping, nausea have.

Fast forward five years to April 2019, I was bedwritten (or I should say bathroom ridden) with unstoppable diarrhea and cramping and fever. Four days in, I ended up in the ER. I was given fluids, but the diarrhea persisted at home. Immodium stopped it temporarily, then it began again. Over the summer, I could hardly get out of bed before noon (mind you I have a 9 and 6 year old). I had zero appetite and lost ten pounds. I have multiple canker sores at once and when those would fade, new ones came.

I was perplexed. I eventually developed hemorrhoids and rectal bleeding. I was usually have loose bowels 6-7x before ten am, then would have another 3-4 normal stools in the afternoon.

I would get back to normal for a bit and it would all happen again. In December, I woke up to horrible internal recriminations pain, as if it was sore, with mucus coming out instead of a bowel movement. Then when I had a BM, it was wrapped in mucus. I began bleeding with it. I had a GI appt set up but it took THREE months to get in.

Two weeks later, I got strep throat and the penicillin cleared up the mucus and loose bowels became less frequent. Now, I’m am either blowing up the toilet or feeling the urge but nothing comes out. Blood drips in the toilet and is present when I wipe. The mucus is there but not coming out in globs.

Recently, I’ve been too tired to even move in the afternoons. I’m an active, athletic girl who hates naps and I’ve been falling asleep at least three times a week in the afternoons. All of this together has really scared me this time.

I called a different GI, out of sheer fear, and got into today. Due to a tender abdomen and what my doctor called a mass, I had a CT with contrast and it showed nothing. Even cited no sign of colitis.

I am set up for an endoscopy and colonoscopy next week where he plans to take several biopsies and check for polyps. My 39 year old sister just had a 10mm precancerous polyp removed and my 29 year old cousin was diagnosed with Stage IIIA colon cancer two years ago.

My question is, who else was told they had chronic appendicitis and who had a clear CT, but the scope revealed more?

I’ve dealt with this for 26 years and am so tired of being told I’m fine and nothing is wrong.