Why does our feeling pre & post-diagnosis differ?

For almost 9 years, I didn't have a definite diagnosis. As you can imagine, I got all diagnoses from IBS to it's all in your head. Definitely, I lived in limbo and was very upset as nobody knew what was wrong with me. My GI told me in 2012, if it were IBD, it would emerge in 10 years ; 5 have passed and we still have other 5 years ahead. In 2016, in the 9th year, the fistula developed and a diagnosis of Crohn's has been confirmed.

I don't want to repeat my medical history as I've talked about it a lot before. Nor am I going to talk about my GI's sudden transparency where he started to explain all my problems thoroughly.

My problem now is that I get frustrated whenever I see my GI since things have become complicated. I feel I'm in a roller-coaster. The visit before last my GI informed me that my rectum is not responding to Remicade. During the last visit, I learnt that the uncontrollable diarrhea was due to activity.

As a person, I'm trying to be optimistic and think positively. My appearance doesn't indicate thatI have any chronic disease: I take care to be very well dressed, good looking, my weight is suitable to my height, I always wear a touch of make up and I try hard never to let the disease defeat me. Other patients at either the infusion center or my doctor's office don't believe it's me who is sick and think it's my mum as she always accompanies me.

A friend's daughter has Crohn's and she goes a lot into remission. When my friend asked me about that, I told her what's remission I've never experienced it and don't know what it means.

How do you prepare yourself psychologically for Crohn's constant frustrations? Should I always think of the worst?

I can relate to both of you. Im so sorry you're both going through this. I am fortunate that my crohns is under control at the moment but its done its damage to my life which continues to be derailed by all of the continuing health problems that crop up. I am so blasted concerned by the pains I'm having i half don't want to know why i have them.
My diagnosis was a bit different in that I had had symptoms for a few years. the doctor thought it was IBS based solely on how much stress i was under at the time until he did the scope and found out how bad it was. I had already mentally prepared myself for Crohns because i had been researching my symptoms for a while but I was pretty shocked I was right because I tend to dismiss my own complaints. I never really know where I stand because when I under react its usually something terrible and when I over react its usually benign. So now I try to stay realistic and deal with every situation immediately. Since several doctors told me that in most cases the things i complain of are nothing in other patients but with me its a good chance its something, its kind of given me permission to be very concerned with any new thing and get it checked out and not debate it with myself.

you can never fully prepare yourself i feel like. I imagine life with chronic illness like surfing on a wave. Somedays I can flow with it and be in the moment, focused on now and not on the grander uncertainties while aware of their possibilities, enjoying simple moments, and somedays I get knocked off into the darkness, consumed by doubts,frustrations and fear and the insurmountable task of reconstructing my life, but I get back on and try to ride the wave once more and every day I stay on it is a success.

I am also very open with everyone about my health issues which is not always a good idea but it has helped me form conversations with and had empathy for a lot of people who I would not have otherwise so I seek out connectedness to find purpose in my life. I don't look sick either and I often am complimented on my outfits. So when I tell people I'm having a rough day its usually met with either but you look good or you have such a good attitude. Both often take an exhausting amount of energy to put together and keep up. the only time i looked sick was when i lost a lot of weight and my professor used to try to force me to eat after class because she thought i was anorexic despite my explanations and her knowing I had crohns. No one could tell that the breaks i took during class were because i had to go throw up because I couldn't digest any food.
Sometimes it does just suck. yes we compromise and loose a lot. Any little bit of good we can drain out of it needs to be found and held on to.

Post Edited (Labradorite) : 2/19/2017 9:54:58 PM (GMT-7)

I hate Crohn's (even though I don't have it) and how it has impacted my son, a sophomore of college, who does have it. During his Freshman year he was sick at least half of the year (while trying to be just like another college student) and spent time at doctor appointments, in the hospital for a micro tear in his esophagus and once that healed back in again for illeocecal surgery. He lost over 25 pounds and it was truly frightening to see how emaciated he had become. And I cannot forget C - Diff which he had at least three times which meant when he wasn't in the hospital or lying on his dorm bunk bed with incredible abdominal pain he was in the bathroom with horrific diarrhea (or throwing up or both!) For his sake (and mine) I have held onto every shred of hope I can find - much of it through this forum. I spend hours and hours pouring over scientific research and arm myself with pages of questions to ask his GI specialists. Although I don't personally know how this disease feels I can appreciate the many struggles that accompanies it. I thank all of you for your insight and willingness to share both the good and bad that comes with this disease! THANKS!!!

Dear all, thank you so much. I really appreciate it. I feel that HW is like my second family albeit my real family does not relate, appreciate or even try to give me any emotional support.

I'm very exhausted now and need to sleep. Will comment on each post tomorrow. Just wanted to thank you all.