New...Not diagnosed yet....But worried.... here's my story

I am new here and I thought it best to just share my story. Here it goes!

I was misdiagnosed as a teenager as having IBS. Took me another 13 years to find a doctor that actually knew what to do with me. I had another colonoscopy at that time, in 2006, and was diagnosed with lymphocytic colitis, hiatial hernia, severe gastritis, and I also have lpr (reflux that goes all the way to vocal cords). I was going to the bathroom at least 10 times a day and some days as many as 20+ times a day. It was awful, I lost 22lbs in a month and could barely eat. I was very very unhealthy. I tried every medicine that they offered, and the only med that ever helped was entocort that I was on for 12 weeks and then went off of it. I've never been normal. I have good days and bad days and still have those days where I am constantly on the toilet. However a few weeks ago, I took a turn for the worst and was rushed to the emergency room by my hubby with high fever, chills, throwing up, very weak, and severe rectal pain that had been going on for about a week and a half. By the time I got to the ER, I was beginning to show signs of being septic and had high heart rate, low oxygen, higher fever, and I was barely coherent. It became a life threatening situation due to the infection. I had a severe perirectal abcess and had to be transferred by ambulance to another hospital and have emergency surgery that day. I was questioned by everyone that treated me if I had a history of crohn's and I told them no, but I do have lymphocytic colitis, which most people don't even know what that is, but it is a more rare form of ibd, just not as severe as crohn's or uc. So my surgeon is sending me back to my gi doc for another colonoscopy and they are pretty much already telling me that I more than likely have crohn's disease due to all my issues. I'm really worried, as I'm only in my thirties and have a family and I've been so sick with this off and on for so many years, I'm just sick of it! What do all of you think? Comments? Advice? Thanks so much for listening!

I agree, it does sound like Crohn's. I would try not to worry though. The good news is, once you get a firm diagnosis, you can meet it head on with a good treatment plan.

Medications have improved so much over the last 10 years. Some of the meds will sound scary at first, but they really do work, and you can get this disease under control and live a very productive life.

Keep us posted. you'll get plenty of good advice and support here.

Thanks 73monte! It looks like I will get lots of support here!

They will not put me on steroids until I come in for my appointment. So, I will just have to wait. Thanks for the idea though!

Steroids can make an infection worse, so they're not appropriate unless you're sure your abscess is clear.

It does seem you have more than just lymphocytic colitis. Lymphocytic colitis would not lead to an abscess, especially one in the rectal region and of such severity.

My mother and my aunt have lymphocytic colitis. I may have it too - it's not clear whether I have it along with Crohn's, or just Crohn's. My biopsies from my colonoscopy last year showed a little of both, but the lymphocytic colitis findings could just be a somewhat unusual Crohn's finding.

Hopefully the colonoscopy will help you figure out what's going on. Then you can get on appropriate medications and that should help your quality of life considerably.

In the mean time, just be a bit careful with what you eat. Avoid popcorn, nuts, seeds, etc. Eat a healthy diet as much as you can, but try to avoid things that bother you.

I agree with beave. Avoid popcorn, nuts, seeds, granola. Stick to a simple diet. Potatoes, rice, only cooked vegetables & lean protein like chicken. I am recovering from a bad flare ( in the hospital for 5 days). I didn't ignore my symptoms & was going to the doctor, but the meds weren't working. Currently on Remicade infusions, methotrexate (6 pills once a week) align probiotic, & folate. I was on 60 my of prednisone & have weaned down to 20 mg. You don't just wake up one day with a Crohns flare. It's a process over several weeks & it takes a while to get better. Hope your better soon