Feeling poorly again):

[Ckt]

Hey everyone..I was in the hospital last week with a flare and passing kidney stones. I left feeling pretty good. Now I'm starting to spiral down again): low low energy to the point of not wanting to get out of bed, take a shower,etc. this is crummy in general!crohns has hitch hiked my body and I want it back!!
I just needed to vent a little. I'm going to Chicago next week on the bus which is an 8 hour ride away and wondering where I'll find the energy to do that!at least they have bathrooms on the bus for the whole ride! I'm just feeling like I'm tolerating life instead of living it!crud..:frown:

 

[Cat-a-Tonic]

Oh, that stinks. I hope the bus ride isn't too horrible - and I hope the bathrooms are nice. What's in Chicago that you're going to - doctor appointment? I hope the trip goes well with no major problems. Hang in there, hopefully brighter days are coming. I'm in remission myself so I promise it's possible! Big hugs to you and I hope you get some relief and can get back to living life very soon.

 

[Ckt]

Yes it's for a couple of appointments at the IBD clinic there and with a surgeon to talk about options..I hope there are some options!!i have to believe it gets better than how I feel at th moment.
I don't mind taking the bus so much. I was going to drive but te thought of doing that for 5-7 hours was too much!
I'll keep you all updated..and thanks so much for sending me thoughts and prayers!helps do much to know I'm not alone!

 

[Cat-a-Tonic]

Are you diagnosed? What treatments have you tried so far? I know in Chicago at Northwestern University they are doing stem cell treatments, so if all else fails maybe that would be an option for you. It's a really new but very promising treatment. Here's a link to more info on that:
http://www.crohnsforum.com/showthread.php?t=22259
Whatever options you're given, I hope there's one that works for you! Good luck with it!

 

[Ckt]

Thank you so mic for the info cat! I have tried all the oral crohns meds, been on remicade until I built antibodies, humira, and now cimzia itch Entocort. Although my numbers look great..never had inflammatory markers, and my recent cat scan showed inflammation in th ileum region, I'm still telling pain, having diarrhea with intermittent constipation or at last down to 5-8 stools a day that are pencil thin. I just feel my life has not moved on and I really want to feel like life is worth living again! I've also had 7 bowel sections and 3 other abdominal surgeries related to crohns and adhesions in my abdomen. This may be adhesions idk..but honestly?if I could have a better life with an ileostomy I would be all for it!as I've written on other posts, I've tried all sorts of diets and alternative therapies too with no lasting relief. I am just TIRED..in every way a person can be tired!im losing hope actually and feeling quite desperate!im in yet another er again after having been admitted a week and a half ago. I don't know anymore what the answers are..Ps.sorry for the typos! And thank you so much for responding!it really means the world to me right now!

 

[Rachel]

Hi Ckt, I was just reading your posts, and I just wanted to say I feel for you. I don't have much advice to offer, but I just wanted to you to know I am thinking of you. I sure hope they can find some answers for you soon, and you find some relief so you can get back to living and enjoying life. It is tiring being on the toilet all the time and going through what you are going through. It can be mentally, emotionally and physically exhausting. Keep us updated!

 

[AuntieEm]

ckt, i oh so hear you. I got home from hosp. yesterday after 11 days and have one hell of a journey to go. still having to force myself to keep trying..

biggest hugs.
auntie em

 

[Ckt]

Aww AuntieEm!I hope you have a speedy recovery! I know this illness is really hard sometimes.. I get so frustrated and st this point I don't know what to do or what to take..hear so many different opinions from doctors. At the er last night, they found a duodenal ulcer(crohns related or just garden variety ulcer who knows) with stranding, enlarged lymph nodes in my right groin and abdomen,and thickening and scarring in my terminal ileum. I held my cimzia until I see the guy in Chicago on Wednesday. I figure he may do another scope(I hope he will) but in lobbying at this point for an ileostomy..too many resections and I'm not getting any younger!i can't keep up having surgeries every one to two years..I know it's not curative but I'm hoping it would be at least better for my quality of life!