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Posted 4/11/2012 4:50 PM (GMT 0)
Its been a long road since october when i was diagnosed. Ive spent more of that time in the hospital. An ileostomy, two more surgeries to clean out infections, drains, more pills.. I just want to get better already. Im mentally exhausted and physically weak. I hate crohns its ruined 3/4 of a year for me and who knows how else it will affect me. Im tired of being scared of everything.
Posted 4/11/2012 6:01 PM (GMT 0)
Andi, so sorry to hear you're still struggling. How is the ileostomy now? I hope you're past all the surgeries. Are you able to eat normally again?
Posted 4/11/2012 11:05 PM (GMT 0)
I have only one more if i can avoid anymore problems to reverse the ileostomy... I can eat whatever as long as i chew i well enough im still paranoid to eat somethings bc i dont want to get backed up with a blockage. I dont know how remicade will go now because im on antibiotics and i cant have remicade while im on them. I've had everything that could go wrong go wrong since January and its completely frustrating. I get angry when i can't remember what its like to be "normal" or see pics from before i got sick. The rehab hospital i spent 3 weeks in traumatized me mentally... On top of physically being sick they were awful with providing care.. It was awful. Ugh. I can't gain weight as hard as i try. I end up sick or get a med that makes me sick or not hungry. Blahhhhh. Sorry for complaining im just tired of this endless merry-go-round of crap.
Posted 4/11/2012 11:11 PM (GMT 0)
But you're home now?? I'm so sorry the rehab hospital was bad. As I remember you went there after being treated pretty poorly at the hospital where you had your surgery?? Is it possible to look for care at another hospital system if you have the reversal????

I know what you mean about forgetting what it feels like to feel normal. Just this past weekend I had a minor flare and it set me off on a sad spiral - but I have had enough experience now to realize that I WOULD get to feeling better and that this would not be forever. Even though I understand what I did to set this off, I wasn't sure how long the bad days would last - so far it's been 4 and although I'm seeing steady improvement I'm not quite right yet. I expect tomorrow I might actually feel hunger for the first time since Saturday and I'm looking forward to that.

My point is that you had a really debilitating flare. You had several surgeries. Give yourself more time, be patient, continue working steadily toward complete recovery. I know you're tired. I wish I could make it better with a snap of my fingers but I can't. Gift yourself with some enjoyable time (friends? movies? music?).
Posted 4/12/2012 3:42 AM (GMT 0)
I was wondering how you were doing. I was hoping you hadn't posted lately because you were doing well. Sorry to hear you're still having a rough time. I hope you're feeling much better, very soon. ~SB
Posted 4/12/2012 1:38 PM (GMT 0)
Thank you guys. Im dreading this summer because i love swimming and the water and with an open wound thats a big no no and ill be having another surgery in the middle i hope to be reversed... So that'll finish off those chances. I just hope all this crap goes by quickly and i can be comfortable again and do normal things.

I hate knowing that even after i get better theres always the chance it'll happen again... Not a comforting thought.
Posted 4/12/2012 1:42 PM (GMT 0)
Put off your reversal until after the summer! I'm sure there are people on the ostomy forum who can tell you how to go swimming with an ileostomy?
Posted 4/12/2012 1:53 PM (GMT 0)
Oh no i want this thing GONE... It is no fun at all. It's quite disturbing to me. Im only 24 and ive had more than my fill of all this and just want to be back to 'normal' asap im not tolerating this process as well as before. Ive gotten so tired of doctors and nurses n whoever else telling me things won't hurt or i should be better by now, this that and every other thing and i ask if they've ever had'x' or know what its like and they say no it really makes me mad. Like the drains they keep putting in my side hurt like no other and yet... They keep putting bigger ones in. Ugh. No mercy..
Posted 4/13/2012 3:09 AM (GMT 0)
I'm so sorry you are still struggling, but I'm glad to see you back on the forum. It is traumatic to be sick for such a long period of time. I hope things turn around for you very soon!
Posted 4/13/2012 3:09 AM (GMT 0)
I'm so sorry you are still struggling, but I'm glad to see you back on the forum. It is traumatic to be sick for such a long period of time. I hope things turn around for you very soon!
Posted 4/13/2012 5:56 AM (GMT 0)
Thanks guys :) i just feel like this process is like a broken record that just repeats instead of going onto the next song.

Ive made a list of foods today that i will soon go and eat... Rueben sandwich, eggs benedict, a salad from olive garden. Oooooh eating fresh fruits and veggies again is great! I was told not to eat those things at the rehab hospital... But at my last stay at the regular hospital i was told ican eat anything as long as i chew it well and that doc was an idiot. Sooo im occupying myself with trying everything ive missed the past 6 months and see how quick i cam break this 93 lb weight barrier i cant seem to get past. I'd like to turn to the side and not disappear or blow away in the breeze haha
Posted 4/13/2012 5:37 PM (GMT 0)
Hi Andi,
I have not had an ileostomy, so maybe I don't know what I'm talking about. I just wanted to share with you that I am considered to be in remission, but I STILL can't eat salads or fresh veggies. I'm not completely sure if that is because I still have some stricturing, IBS or some other reason. I'm just cautioning you to go slow and see what your body can tolerate. I'm sorry you lost so much weight, and I sure hope you get to feeling well soon!
Posted 4/13/2012 6:48 PM (GMT 0)
Oh i am..... Im paranoid.
They cam cure cancer...why not crohns? Why couldnt i have had ulcerative colitis? :(
Posted 4/13/2012 10:59 PM (GMT 0)
Hello Andy,
I agree with Gumby 44, I have had a reversal and you really should take it easy and not eat anything too heavy at first. I had my ileostomy for about 8 months before it was reversed, and the first thing I treated myself to was a great big mikshake as my doctor told me I could not eat any sugar while I had an ileostomy.

Because they are reattaching your intestines, you want to make sure you give it time to heal. Hopefully you will start feeling better soon. One funny thing though, when I had my ileostomy the doctor sewed my rectum closed and I was actually looking forward to "farting" again.

Good Luck with everything.
Posted 4/13/2012 11:10 PM (GMT 0)
Mine is not sewn up... Ouch. I actually went to the bathroom last week while i was in the hospital... Quite disturbing since im not reconnected yet and ive had the ileostomy for 2 months... I was told i could eat anything as long as i chew it very well. I did low residue up until this week though. I've only been eating small small amounts because im afraid of it getting stopped up or something. I spent a night drinking mag ox because i had an idiot doctor who let me get backed up after the ostomy was placed and my crohns wasnt causing diarrhea and i was on pain meds out the wazoo.

How did you deal with the ostomy and how did the reversal go?... Was it easier than the surgery for the ostomy? I am terrified of the surgery but cant wait to be reversed and normal... I loathe the bag changes, i was also lucky enough to get a bad batch that wouldnt stick to me and leaked in a matter of hours. Ive never met anyone else who had an ostomy yet and would love to hear experiences..
Posted 4/14/2012 12:33 AM (GMT 0)
Andi87~I'm so sorry things haven't been easy for you. I'll start by saying it sounds like you've gotten some really poor ostomy information shakehead

I would definitely suggest checking out the ostomy forum, if you haven't already, because there are many fellow Crohnies!

I'd like to suggest you introduce one new food a day, in a small quantity, and if it goes ok add it to you list of foods to eat. If it bothers you try it again but give you body a little time to adjust. If you find yourself 'backed up' grape juice and even hot tea would help your body move things along. People with ileos shouldn't take laxatives because they can be dehydrating.

If you don't mind me asking what part of the country you are from...there are many ostomates on these boards and we be glad to meet you and help if we can. Hang in there, you are still new to your diagnosis AND all the surgeries:-( btw the reversal is usually much easier than the other ones you just had,

Hope to see you on the other board too!
Posted 4/14/2012 12:52 AM (GMT 0)
Ugh. I have miralax for when it gets too thick. I do try and drink enough. I'll def be making my way over to those boards. The more people i talk to the more confusing this stupid ileostomy gets. I'll never get used to this thing. I hate the feeling of it working, and it gets sore, no one can tell me why. I guess its bc i was eating more that day than usual. ???..
Posted 4/14/2012 12:53 AM (GMT 0)
I live in the central pa area. The hospital said they'd give me info on groups and failed on that front too...
Posted 4/14/2012 1:07 AM (GMT 0)
http://www.ostomy.org/supportgroups.shtml#PENNSYLVANIA

There is the list of support groups in PA...I'm not really familiar with counties in PA. I try to attend them in the NE Ohio area and they usually have a ton of GOOD information.

You shouldnt have pain once you are through recovery from surgery...but remember you did just have major surgery and your body may need a little more time to heal and adjust. Did/do you have drains from the infections? Those complications will slow your healing a bit.

Try to eat protein to help your body heal....cottage cheese, scrambled eggs, yogurt (watch the sugar %), creamy peanut butter and non stringy meats. Salt will also help with retaining fluids...pretzels and crackers.

As your body adjusts/heals you'll find your appetite!
Posted 4/14/2012 1:18 AM (GMT 0)
I've had multiple drains and horror stories from them being placed while awake and feeling everything... I currently have a drainage pipe as i call it because it is a huge drain. They never drain anything... But my surgeon i think loves torture and leaves them in. They irritate the crap out of where they are inserted and i can feel it thru where it is in me. I hate hate hate the drain...
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