Newly diagnosed..... maybe

Hi Guys

I’m not quite sure what i’m aiming for by making this post. Perhaps i hope to learn some new things about Crohn's, but really, I think i just need to share whats going on in my life with people who will understand. My family/friends appear understanding, but i'm certain the vast majority of them have no idea what Crohn's really is. Maybe by sharing my experience with others who are going through/have gone through what i am now will help me.

About 8 months ago i started having lower right abdominal pains (definately not a Crohn's flare as the pains were mild to moderate, not severe). I went from pillar to post trying to find the answer: urine tests, sperm tests, ultrasounds, blood tests, so many visits to my gp, several times to two different urologists, even to a surgeon, and an array of other tests etc that dont imeadiately spring to mind. By the end of 2010 i was very confused and fed up with all the different theories and treatments being thrown at me.

In January i finally got a colonoscopy. The results showed that i have inflamation from, i think, my anus right up to my small intestine. I then took my colonoscopy and pathology results to a gastroenterologist, who seems quite certain i have Crohn's, though cannot give me a final diagnosis at this stage. I have to repeat the colonoscopy again in one year. I was informed that i have mild lesions in the final part of my small intestine, and also in my anus (or rectum). This, apparently, is a classic sign of Crohn's. Also, all of my symptoms are apparently Crohn's like symptoms. My gastroenterologist did say that some bacterias have been known to mimic Crohn's, so there is an out for me, but listening to the way she talked, i think i'm done for lol.

I was told i need to be treated for the next year just like i have Crohn's and in one years time get another colonoscopy which will reveal more. Last week i started taking my Crohn's tablets (approx 70 GBP they cost me!!!):

Pentasa 500mg - oral tablet form 3 times a day
Pentasa 1g - inserted up the back passage each night before bed
Cipronex 500mg - twice daily
Metronidazol Polpharma 500mg - morning and night

I have only been on the tablets one week now, but i think they are possibly already helping. I have not felt any twinges around my abdominal area and i am also having a much easier time going to the toilet. I cant say i enjoy sticking that rather large Pentasa tablet up my back end every night before bed, but i guess i need to get used to it.

I think i have a lot of questions i'd like to ask, but typing that has just zapped most of my energy so i'll come back with those later.

Regards
Ali

Welcome, Ali! Our stories are pretty similar. I didn't have many symptoms when I went in for my colonoscopy. I had inflammation and small ulcers in the same areas - terminal ileum (end of small intestine) and rectum. My GI immediately suspected Crohn's, but my labs weren't as clear. They said "possible Crohn's" rather than "chronic Crohn's", which is a firm diagnosis. However, we I started treatment a month later as more symptoms came about. My GI thought either I had a very mild case or it was simply caught early. I surmise it was caught early because I never had any stomach issues a day in my life up until a few months before the colonoscopy.
I am happy my GI started treatment, and you should be too, because hopefully this will prevent us from getting worse. And being that you are feeling better already says something! I, too, take a nightly suppository that I am less than a fan of. However, it really helps that area! I tried going off of them, but symptoms started back up. So, I suggest sticking with them! I hope you continue to feel better each day!

HI Ali welcome to the forum! This is a tricky disease for a diagnosis, took me a year. Since you are in a mild stage, it is best to stick with the milder ones as they have prescribed. Medications for Crohns are certainly not cheap. I am lucky, my husband has 100% coverage, with that, we would be in the poorhouse. Family and friends all mean well but until they read some good books or literature, they will never understand. I had my husband, daughter (University student ) and mother to read Fred Sabils books, easy read and to understand.

http://www.crohnsforum.com/showthread.php?t=6095&highlight=Fred+Sabil

many times I have picked up my book for references because you cant remember everything. Alot of people can't eat dairy. The meds you are on....Flagyl, will make you so sick if you drink ANY alcohol...trust me, 20 years ago I didnt realize and omg...couldnt stop vomiting.

Many people are here in mild stages or they are trying to get there. Trial and error is needed, because we are all different, in our disease. Glad you are here, welcome aboard!