Undiagnosed Crohn's or colitis

[GEORGEP]

Last December I had pain in my lower right quadrant so I went to the Emergency room and I had a CT scan. They said I had inflammation in my right colon. I had a colonoscopy and it was determined I had severe ulcerative focal colitis. I had to take Budesonide for 3 months to reduce the inflammation. I had a follow up colonscopy done April 4th and that area healed but and they did biopsies of my whole colon and none had dysplasia. The pathology report lists ascending colitis. My doctor said I have Crohn's disease. The only symptom I had was the lower pain in my abdomen. I have read with Crohn's you usually have diarrhea etc...
They did blood tests and both came back negative for colitis and Crohn's. I am totally confused.

 

[DJW]

Hi and welcome,

Lower right quadrant pain was all I had for several years. That slowly changed when I was 11/12 years old and I was fully investigated.

Just to clarify, colitis is just inflammation in the colon. Ulcerative colitis is limited to the colon only and is different from Crohn's disease. Crohn's can effect your entire digestive tract, mouth to anus. Ascending colitis is inflammation in the ascending colon. Right now your Crohn's is limited to the ascending colon.


Sending you my support.

 

[GEORGEP]

Thanks, I have to see my doctor in March. Do you think I will have to take medication or only take it when I have a flare up? Also, is their a special diet I should be on for this?

 

[ronroush7]

Hi. You will have to take medication for the rest of your life. I would suggest doing a food diary to see what foods aggravate your gut. Can I ask why your doctor's appointment isn't until next March?

 

[GEORGEP]

Sorry, My appointment is May 12th. What kind of medication do you think I will have to take?

 

[ronroush7]

Are you on any medicine right now? Tbey may want to put you back on budesonide. I can't say anything for sure.

 

[Lady Organic]

Hi George and welcome.

It appears you have crohn's disease located in the ascending colon (first part of the large intestin). Clinical symptoms can vary greatly from a patient to another one. What is most important is to monitor disease with exams just like you are doing with your doctor.

The pathology report mentioning ascending colitis is the one from December 2015 or April 2016?

If you still have disease activity with a pathology report mentioning active colitis,, it is obvious you doctor will propose to you some kind of long term (maintenance) treatment. It will most likely be an immuno-supressant (Purinethol ,Imuran, methotrexate) or a Biologic (Remicade, Humira, etc) or a combo of both.

If your last pathology report is fully clear (no disease activity) you dr may want to give some time for observation before putting you on some further medication or propose a mild medication of 5-ASA compound, depending on his protocols and in discussion with you. Doctors have different approaches regarding treatment. Some patients are lucky enough to be in full remission with only a course of budesonide for instance. How long this remission lasts is different from one patient to another again (weeks, months, years..). If the doctor judges the disease activity was really severe on first scope/scan, he/she might propose long term treatment more aggressively.
The key is close monitoring, to make sure you remain in remission, with or without treatment and especially important to do so for a patient like you who experiment very few symptoms. Untreated chronic inflammation of the intestine can lead to important complications, so it is really important to monitor it and control it.

In the meantime, I invite you to take a look at IBD-AID diet in my signature. Something you could start in the meantime before your next appointment. Maybe it could be of some help. I strongly believe in the power of diet as i know some patients for whom it works, but this has yet to fully studied in scientific research on large groups of patients.

let us know of your you fallow up appointment, wishing you well.

 

[GEORGEP]

Thanks all, My doctor called me last night and she is going to have me start taking Lialda (mesalamine) 4.8gm a day for six months and then the dosage will be lessened. Not sure what kind of drug that is? Anyway as far as diet goes she said unless I have a flare up I can eat a normal diet whatever that is. I don't drink cows milk but I do eat yogurt and sharp cheddar cheese (lactose free). I am not sure if I am lactose intolerant. I have been peeling my fruits and eating cooked vegetables and not raw. I don't eat very much red meat and I avoid fried and greasy foods. My doctor said they are not sure if I have Crohn's or colitis? She said I have inflammation going on right now but I took Budesonide for 3 months and that may be why or it healed on its own.

 

[ronroush7]

If I remember correctly, Lialda is for if Crohn's is in the colon. I take it also. I hope you get diagnosed soon.

 

[GEORGEP]

Thanks, My doctor said I have no inflammation of my colon right now but she said that may be because of the budesonide steroid I took. She said I had some architectural changes in my colon , not sure what that means?
I told her that 5 years ago I experienced the same kind of pain in my lower right quadrant and I went to the ER and they did a CT scan and they said I had possible Cecum diverticulitis or colitis and at that time all they did was give me antibiotics to take and it cleared up.

 

[Lady Organic]

Lialda is in the 5-ASA category of medication I was explaining in my previous post. good luck!

 

[GEORGEP]

Thanks