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Hi new here, looking for support and hopefully a diagnosis soon

I'm new in forums, and this will probably get long, but I would so, very appreciate it if anyone would read this, and any words of encouragement. I've felt so alone for a long time, and it's amazing to finally write this out where someone might read it and understand.
I have had severe stomach cramps, followed by violent diarrhea or constipation accompanied by nausea since I was four years old. I remember crying in the bathroom, and thinking I must have committed a sin to God to have such pain (my family is very religious). I am now 20 years old, and it has never gone away. Funnily enough, my parents never took me to a proper hospital for examinations - all the doctors took blood tests and told me it was probably stress, or food poisoning or that I was faking it to get out of school. I suppose the reason for my delayed attention to my illness was because of my 10+ years of depression (After 2 years of therapy I am free of it now!!!) and because all the cramps and diarrhea went away pretty quickly after they happened, so when I told my parents about it I looked perfectly healthy.. So time passed, and my worst flare up in a while began about 2 months ago.
It was a normal morning with another bout of cramps, but something was wrong with the cramps - it was so severe and painful, that I became very scared and called my mother. It kind of went away after the diarrhea, but after that, it became regular, more regular than ever. I was scared to eat anything, so I lost weight, became depressed and tired all the time. Two weeks ago I had a really bad case of indegestion, which led me to schedule an appointment at a good hospital. I went, and they immediately scheduled a colonoscopy (I only ever had endoscopies with no problems), blood test, stool test, and other physical examinations. The doctor told me that if nothing flashed up, it was probably IBS.
I had my colonoscopy two days ago, and they found inflammation, so they took samples to analyse. It was about this time I went on the internet, and found out about Crohn's disease.
The symptoms were so accurate they scared me. Cramps, diarrhea, blood with stool, vomiting, joint pains(mainly my knees and hips), eye problems, constant fatigue, constantly being cold, and loosing weight drastically. Ever since I began getting cramps at four, my mother told me I had gone from being of healthy weight to being very, very skinny, and always have been. My symptoms come in waves - sometimes of the year I'm fine, then some months are hell. I have always had very irregular periods since getting my first at 15. My doctor has ruled out IBS. I am trying to not self-diagnose and pre-worry - it might be something else (they've ruled out cancer as well). Yet I have never felt so understood reading these forums and their stories. I am simultaneously scared to death and relieved to be understood. I will have my final examination and diagnosis on next Thursday. Whatever it is that I have (some sort of IBD?), I hope, that at last, I will be treated. Thank you so, so very much for reading - it truly means the world to me.
 
Welcome to the group. I am sorry for everything you have been through. The first time I had bleeding I thought it could be cancer but it was Crohn's Disease. You said something similar to when you told your parents you looked healthy. IBD has been called the invisible illness. You also mentioned something about being scared and not eating at one point. You could do a food diary and see what foods aggravate your system. This is a very supportive group. Feel free to visit anytime. I hope you get some answers soon.
 
Welcome to the forum! Being undiagnosed can be incredibly worrisome and cause a lot of anxiety. I'm currently waiting to see a GI specialist, haven't had scopes or anything yet. This group however, is immensely supportive, and knowledgeable. Thank you for being brave and sharing your story with us, I hope you find answers and feel better soon!!
 
Thank you so much for your support, and I think I will try out the food diary. It feels much better to know that I'm not alone :)
 

David

Co-Founder
Location
Naples, Florida
Welcome to the community. Do you know when they are supposed to get back to you with the results of the colonoscopy biopsy?

All my best to you.
 

Honey

Moderator
Staff member
Hi there and welcome, Hopefully you get the results of your test soon and that will ease your mind. It takes time to get a diagnosis and it is natural to worry, I did. We are all individuals in our symptoms and also our treatment. So try not to compare with others but deal with how you feel each day. I wish you well again soon. Let me now how you are doing. It helps to share on this site, with others who understand.
:welcome::rosette1::rosette1:
 
Hi, thank you for your replies. I have recieved my colonoscopy and stool test results which showed 55.7ug/g calprotectin levels and focal active inflamation with lymphoid aggregates. My blood test came out negative. The doctor said the results were fine, and that I had IBS. Maybe that would not have gotten me so mad and upset if he hadn't said that it wouldn't hinder my everyday life and I should be able to bear through it. When I asked about my rectal bleeding (dark red and in period like quantities), he shrugged and said he didn't know about that.
I am going to another doctor at a different hospital next Monday - someone who will hopefully listen first before jumping to the conclusion that I don't look sick so I'm not sick. I will ask him to examine my small colons to make sure there are no strictures or further inflammation.

Also I was wondering how much weight loss should be a concern? I used to weigh 110pounds or more (50kg), but over the past few months I lost weight to 105pounds (48kg) I didn't think much about this, but should it be a concern?
 
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