Diagnosis -- hopefully on the 21st

I've had one heck of a time trying to get to this final appointment that should determine my future.
Pretty sure I have crohns disease and didn't find out like most of the stories that I have read on here.

Back on September 1st 2012, I was working and started experiencing strong pains on the right side of my body.
I went to the hospital as my boss was concerned that I had appendicitus.
When I went to the hospital they ordered me a cat scan to check on my appendix and my gal bladder.
When the results came back they said that everything looked fine except I had some inflammation in my small intestine.
I followed up with my doctor a week later, and he ordered me to go see the GI doctor in town. In the mean time he had been asking me what symptoms I was having. When I got to thinking about it I realized that I was having horrible kidney pains and pains almost like a UTI. At the time I didn't think anything of the diharrea. From there I was given several blood panels, several urine tests, and a ultra sound. Everything was showing up fine except I had an exceptionally high white blood cell count.

Weeks passed before I went to see the GI doctor. After our first visit she ordered that I get a colonoscopy and an endoscopy done. At that appointment she had been asking me about going to the bathroom and whether my bowel movements had been normal. At this point after the past few weeks my bowel movements got worse, and the stomach pain was constant. Woke me up in the middle of the night with night sweats, had to use the bathroom, found blood etc.

I went back to follow up with the doctor after I had the tests done and they informed me that I came up positive for H-Pylori. I took the 6 weeks medication on that to try and get rid of it. I go to lab corp tomorrow to see if that went away. Crossing my fingers.

In January I went to the GI doctor again to follow up and she started me on entocort (6mg/day) and pentasa (3000mg/day) and she ordered a small bowel follow through. She informed me in this appointment that even though all of my blood work came back negative for a IBD that she was sure something was wrong as a lot of times blood does not reveal that you have it. She also said that the cat scan showed that I had a stricture in my small intestine which is what had her leading toward crohns disease..

I have been feeling better since I have started all the medication, and I have been on it consistantly for a month now.
Sometimes I experience mild pain, I still have irregular bowel movements, but I do feel like it has mellowed out a lot.

I go see my GI doctor on the 21st of this month for a diagnosis, as I am sure she will tell me I have crohns disease I am a little fearful to be on medicine for the rest of my life. I have had a hard time coping, but am living life like nothing is wrong. I do not want the disease to over take my life, and I do have an amazing support system full of friends and family.

Just figured I would share my story as I have read some inspiration ones throughout today.

Hello and welcome to the forum

I am pleased to hear that the doc has not ruled out an IBD purely based on blood results like some do as these are not a full proof source of diagnosis in this area. I am glad you have noticed some improvement on the meds and was wondering whether you have found whether certain foods aggrivate your symptoms?

There is a lot of helpful info and support here for you hun so do have a good look around and please keep us updated on how things go with the appt.

AB
xx

Hi and welcome!

It sounds like your GI is on the ball!! Good luck on 21st, I hope you get a diagnosis but don't be disappointed if you don't. It can take some time.

Let us know how it goes!

:welcome:

Welcome to the forum, Elizabeth!

Were biopsies taken during the colonoscopy, and did they indicate IBD? Like Angrybird said, it's great that your doctor is aware that the blood tests can be unreliable.

Please let us know what your doctor says! :hug:

I prey you (and I ) find some answers and some relief to our pain.
It odes take a long time to find this. Do na lose faith if one test does na work out, we will find it and get through this together. I too know this was brought on by H Pylori. Doc is sure I ave Crohns jus need a diagnosis to bring on the treatment. Treatment we ave been waiting way too long for.

Thank you for all of your respsonses.

Angry bird - I have not found that certain foods aggrivate me more than other foods. In the beginning I thought that maybe I had celiac disease so I have done the gluten free, wheat free, etc diets. I have yet to keep a food diary, but have thought recently about keeping one, maybe there is a connection to something that I am just not seeing.

Niks- I will try not to be disappointed if I don't get a diagnosis, up to thus far I would like to think I have been doing well each time not receiving a diagnosis, and at the last appointment she made it very clear that if the small bowel follow through did not show her what she wanted to see that she would order the cam pill, so I know that it always a possibility as well.

SarahBear - During the colonoscopy and endoscopy they didn't find anything except the H-Pylori. She wasn't convinced off those tests either that I didn't have a IBD. I am very thankful to have such an amazing doctor. Although it does take a while to figure everything out she hasn't given up on me. At this point she is going off the inflammation that was found in the cat scan and the high blood cell count in all the blood work I have had done.

nativesith - Relief and answers are right around the corner I can feel it. I'm not loosing hope! You shouldn't either!