Hi, I'm new here... My story

[Crohn's_Doll]

Hi, new to this site. I hope to lean a lot and help out if I can.

My Story:

I was diagnosed with crohn's in 1980. Had symptoms for a month before going to the dr. ( mom thought it might be a flu bug) I lost a lot of weight and complained about pain and feeling "sick". As I remember, I couldn't go to the loo at all, nor did I eat much of anything. Finally went to see the dr. whom sent us right away to the hosp. I recall the nurses telling me I would be staying with them for awhile, I was quite distressed. I was 6 years old at the time and stayed in the hospital for a month, they first thought it was my appendix. My weight in the hosp was 17.5 kg with a low grade fever, abdominal pain, nausea and vomiting. They did exploratory surgery and found that I had thickening and inflammation in the ileum as well as numerous enlarged lymph nodes. They also mumbled something about "yersinia"which was negative. My white blood cell count was 27,000.

Anyway.... I healed enough to go home. I was ok till the next year around the month. Went back into the hosp for another month. I remember many tests being done one of which I don't know the name of.. It involved an xray type machine and a ball which was pressed and rolled on my guts. I was put on prednisone and the elemental diet which I did NOT tolerate and they switched it to ensure. I blew up like a balloon but felt sooo much better, can't remember much of that part but I know I was "crabby" with the biggest cheeks you ever saw.

I haven't had any major complaints till I was in my teens, I started to feel icky again but the dr told me over and over it was just nerves etc.. I suffered until a few years ago with a LOT of complaints.. The thing was... Nobody told my mom that this was a lifelong disease or that it can come back at anytime. I told my new dr. that it was crohn's and he didn't believe me (sheesh). I picked up the evidence at the hosp (med records) and showed him. Finally we got the ball rolling, was put on pentasa which did nothing but give me a whopping headache and then this year I've tried asacol which didn't seem to be helping.

Currently I'm suffering with pain, nausea, weakness, dizziness, loss of appetite and my pet peeve panic attacks and anxiety which make it nearly impossible for me to get out of the house. I have an appt in 6 days to see the specialist. I don't know what to expect and feel nervous about going. I worry that if he puts me on steroids, I will be messed up even more. The whole adrenal thing, could it make the panic even worse? I'm trying to control things with a low residue or liquid diet, I have to take it day by day. Any small stressors at this point would be magnified X10, I can't handle anything for the moment.

Thanks for listening.

 

[Jefferson]

Hi and welcome to the forums,

I'm new myself and I already sound like I own the place by welcoming you :yrolleyes:

You've been on quite a roller coaster ride; I supposed back in the early 80's crohns diagnoses were not that easy to come by, sorry you had to spend so much time in the hospital at such a young age.

I believe that test with the x-ray and ball was a Upper GI with a small bowel follow through. Do you remember drinking yummy thick barium?

I too have a majority of your symptoms right now; while I should say I'm not enjoying it, the loss of appetite is appealing as I could shed a few pounds. But the pain, nausea, and exhaustion is overwhelming at times. I have just started Vitamin D and it seems to be working. Also B-12 injections. Ask your doctor about them! Stay positive, it's what keeps me going although like you, I'm sick and tired of being sick and tired.

-Jeff

 

[imisspopcorn]

Welcome to the forum. There is a lot of great information and caring funny people here. I'm sorry to hear you feeling so bad. I hope you get some answers at your appointment. Let us know what happens.

 

[Guest]

hi and welcome

i was also going to mention the B12 issue, but Jefferson beat me to it lol. when i was B12 deficient i had a lot of the symptoms you describe.

regarding anxiety and panic attacks - been there too, and i sympathise, they're horrid. but even when they are so bad they're taking over your whole life 24/7, they can be overcome - it just takes a little learning and accepting certain things, relaxation and determination to beat it. sounds easy lol, it's not - but it can be done

regarding your appointment - a lot of people here suggest that you write a list before you go.. put down everything that's happening symptom-wise, and also your worries, & questions. it saves kicking yourself for forgetting something once you've walked away from the consultation. good luck - and let us know how it goes!

 

[Crohn's_Doll]

Hi and thanks for all who replied.

Jeff, I will defiantly ask about the B 12 injections. I did have a few upper GI small bowel tests where I did drink the not so yummy barium drink (gags) LOL. This test was different, large machine (like xray) and they used a ball kinda like a volleyball (it might be smaller but seemed large to my small body). I hope you are doing well, did the B12 clear up those symptoms or was it more so the Vit D?

Imisspopcorn, thank you so much for the welcome, hope to be seeing you around

Shantel, I have seen this dr. a few years ago, he was the one that re-diagnosed me with crohn's (colonoscopy )after my other dr. didn't believe me. He said at the time it was mild to moderate. I did tell him about the panic and anxiety, it wasn't as bad as it is now and I will be sure to mention it again and my concerns about steroids. I did watch on the screen when they did that test, I was so shy as a kid and there was like 10 people in the room all gathered around watching (teaching hosp), I hated that test the most probably because I didn't understand why everybody was there and they were laughing and joking about stuff LOL. I also watched a tilt table test too which was cool even though I didn't know what the heck was going on, but I remember it clearly. I hope to have both treated at the same time (anxiety and crohn's) kill two birds with one stone. Thank you for your info.

Dingbat, ugh they are horrid the panic attacks. I get them severely and have been dealing with them for 20 years now. I have learned to control them somewhat in the past and know that it can get better. But feeling like this and certain stressful events kicked it into overdrive. Big set back, but I will be working on it with CBT and the relaxation/muscle relaxation as I've done before.
I made my list up a week ago... I wrote down symptoms, feelings, diet, panic info,meds, questions and concerns etc.. LOL it's a long list.

I'll let you know how it goes, thanks and wishing you all well.