Confused

[Toran74]

confused

Hi guys some may remember i was new here and was admitted and diagnosed with crohns in july this year was learning to deal with it and understanding all that came with it then last tuesday i had to be admitted again as i had a flare and now they said i have ulcerated collitis now i'm confused with crohns and ulcerated collitis i was in a lot of pain and spennt all night tuesday passing pure blood they did a colonoscopy again and saw that the infected area was my colon although previous colonoscopy didnt show any as i was at my wellest and on steriods

It seems what happened i was weaning down off steriods and took my last one on the monday the pentasa should have helped but didnt ai ended up in hospital and back on iv steriods fluids etc and my potassiun,calcium and magnesium etc were low i have had an MRI too on Friday waiting results (what will this show)

Sorry for the mis match post i am new to crohns and cant fathom out what is what

Feeling pretty low been let down by a few friends as they seem to just say "oh i know loads of people with it you'l be fine" they dont seem to want to understand how poory this is making me feel and scared too

Thanks in advance for replies

Tor :depressed:

 

[Guest2]

Hi Tor, Sorry about all of it. I cant imagine how confusing it all is. My husband has been diagnosed with both CD and Ulcerative Colitis, a lot of the time it depends on the Dr.
People do not understand the disease. Mike was diagnosed over 25 years ago and his own mother does not get it. I think it is because the disease evolves. Or maybe people do not want to understand the worst of it. I also go with people are just ignorant.

I cant promise your friends will get a handle on it, But I am sure your Dr.s will. It usually takes a while to match the right meds with the patient.

I hope your family is giving you the support your friends are lacking. Remember there is always plenty of support here to go around.

I hope you feel better soon.
Kim

 

[Toran74]

may thanks that is reassuring to know i think it is just the ignorance i had never even heard of it before July so can understand its just its scary but yes my family and i have 3 little girls are briliant x

 

[rottengut91]

It's difficult for others to understand how something like CD/UC affects a person. Many people don't pay close attention to how many times their friends head off to the bathroom. I don't think I have ever told the guy next to me that my butthole feels like someone shoved a hot poker up there evertime I need to relieve myself. We fight a pretty private battle here. The things we go through are not exactly "dinner conversation". I guess I'm trying to say, it's not exactly their fault they truly don't understand. What did you say to the last person who asked how you were? I can't imagine you spilled your guts and were blatantly honest regarding your true situation. Remember too, we all have private battles we face everyday. Ours include CD/UC, others may be some different ailment, alcoholism/addiction, child-abuse, you get the idea. Can we ever really put ourselves in someone else's shoes. In my experience some doctors don't get how much some people suffer either.
Don't be afraid to be honest with people about how you feel. You don't necessarily need to lay out all the details, but try to make them understand that you really are feeling poorly and that you are scared. Tell them just because you may look normal on the outside, inside it's a whole other story. Take it from me, I have suffered deep depression because I internalized my feelings. I tried to be the strong, non-complaining type. Put on a happy face and fight the battle alone. It will one day back-fire on you. I have gotten so depressed that I barely got out of bed for months. Feeling like you're all alone in this world is a terribly desperate feeling. I just joined this forum, I can't tell you how great it feels to finally not feel so alone. Hang in there. You'll one day gain enough insight that you are strong enough to handle this.

 

[Toran74]

thank you julie that makes total sense and i supose as get used to it all then the rest will follow

thanks for your replies