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new here, and im just sick and tired of being sick and tired.....

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Crohn's Disease
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Posted 12/13/2007 5:27 PM (GMT 0)
Hello everyone, well to start off my name is Laura and I was just diagnosed with crohns just this past November, well I must say that ive learned more about this from here than from my own doctor, so for that I thank you all..I started off with pentasa and a large dose of pred and last week took my last half tablet well on the same day I was placed on an antibiotic for a sinus infection well within a couple of days my stomach problems started up again but its an on and off thing one day im ok then the next day im feeling bad again, and my dr isnt sure if its due to the crohns or the antibiotic my next appt with him is in the first week of Jan, and at my last appt he made it sound like if the pred doesnt work he was going to have me start going for the remicade(which i will admit scares me to death)...I dont know if its from the crohns or the medication im on but i always feel tired and my body just hurts i feel sore all over..so i guess thats why i feel sick and tired of being sick and tired, and it doesnt help that people dont seem to understand why I keep telling them I cant make any commitment for the holidays due to not knowing how im going to be feeling on that day, and that im using my crohns as a reason for feeling the way that I feel or just not wanting do anything..So again im glad that I found this site and sorry for the rambling but I just dont know who else to turn to I know of nobody who has this, but now it seems as if i have found plenty..thanks for listening....Laura
Posted 12/13/2007 5:43 PM (GMT 0)
I think this disease is hard on us mentally. It's always such a long, drawn-out, confusing process when we deal with flares. Dealing with the doctors isn't always fun, and you never really know how you are going to be feeling from one day to the next. I have had the disease for about 12 years, and I've had enough flares to know what one feels like. I sometimes have a hard time convicing the doctors that I'm having one.

I've learned not to plan too much. We do a lot of things on a whim because it's all about how I feel when I wake up in the morning.

There are lots of wonderful, informative people on this forum. You are in a great place when you need help with a Crohn's issue!
Posted 12/13/2007 5:52 PM (GMT 0)
Antibiotics are notorious for killing not only the bad bacteria but the good bacteria in our guts too. You really should take a probiotic 2 hours after every dose of antibiotic. This will help you avoid getting what is called a C-Diff infection. With the antibiotics they generally will cause diarhea for us. Kind of a necessary evil. But definetly take a probiotic, it will help to keep the bacteria levels in your guts level.

I completely can relate to others thinking we are using Crohns as an excuse. Unfortunately, if they don't have Crohns they are not going to understand. Kinda of like if they could just walk one day in our shoes they would understand, but since they can't walk in our shoes they will never understand. Just know you are not alone.

Welcome to Healingwell. You will find alot of wonderful folks on this board. Please do remember that each of suffer Crohns differently. Some might be really bad off, while others of us have mild cases. No two cases are alike. I didn't want you to freak out thinking that some of the bad stuff might happen to you too. We look forward to hearing more from you. And I hope you can get thru those antibiotics.

God Bless,
Gail *Nanners*
Posted 12/13/2007 10:22 PM (GMT 0)
This forum has been my life saver, especially when I was first diagnosed and all those insomniac nights on prednisone. I hope you get to feeling better soon, and welcome!
Posted 12/13/2007 10:58 PM (GMT 0)
welcome aboard laura. it's really nice to have this place to just talk to people who can understand and relate.

take care!
Posted 12/14/2007 12:59 AM (GMT 0)

         Just adding my welcome to HealingWell, you already know how valuable this place is. A support group here 24/7. That is PRICELESS.

     Anyway, sorry you have to be here but welcome!

    Sincerely,

    Matthew

Posted 12/14/2007 1:20 PM (GMT 0)
Welcome to the forum!  I just started reading this forum about a month ago and I've learned more from this forum than from any gastro.   It's great to be able to complain to people who understand and to get advice from the 'experts' - the people who have this disease.   The doctors, unless they also have Crohns, just don't get it.  Also, spouses, significant others, friends and co-workers usually don't get it either, as hard as they may try.   I'm so thankful for this forum.

Please keep coming back and participating.  Everyone's experiences are so helpful to the group.

Posted 12/17/2007 1:11 AM (GMT 0)

just wanted to send you a welcome too!  Sorry about the tiredness factor.  Yep it's from BOTH the meds and the crohn's.  Just make sure to try to rest because you'll feel better sooner.  I was diagnosed in August and fought and fought for my old life until mid Oct.  I FINALLY feel a bit better but it's cause I sleep 10 hours a day and plan my outings.  You will notice that you may lose a lot of friends because they refuse to understand your new life.  And then you will notice that your relationship with others will grow stronger. 

yeah I can empathize know about people doubly not understanding about you don't being able to make it to soirees--I love it.  I cancelled on someone last minute a couple of weeks ago because of the tum tum not cooperating and then they emailed me and asked me if I could just bring my own food or not eat for this coming friday.  I replied saying that I can control WHAT I eat but I can't control my symptoms or how I will feel so if I don't feel well again the day before, I'll have to cancel again.  DUH.

take care


Posted 12/17/2007 1:31 AM (GMT 0)
You guys have said it all. People just don't understand this disease until they know someone that has it and the hell they go through. I hate it when they think its just a upset tummy i feel like giving them a slap in the head. These people here totally understand and god bless them all, thanks everyone..
Posted 12/17/2007 4:47 AM (GMT 0)
What malakai says is so true -- even though you may lose friendships with those who refuse to understand, you will realize how good your really good friends are. I have lost someone I thought of as a "good friend" prior to Crohn's. Now I am thankful for the friends I have... The one who took me to ER over the summer when I called at midnight (after he'd just taken a dose of Benadryl!) and stayed by my side until 4:30am!!! I've found friends that stick with me in the worst of times and celebrate with me when I am feeling well.

As for making commitments, I just cancelled my trip to see a very good friend from way back in H.S. (known one another since we were 15/16 -- 25 years almost!) and I had to cancel my trip to see him marry last weekend. I just couldn't make the trip. I hate how the disease can change my life that way, but I still do many of the activities I love, including skiing and hiking. (I just leave later in the morning! ;-) )

On the other hand, having Crohn's has changed me in ways I think of as positive. I understand more about myself, life and its difficulties, hardship, friendship, priorities, happiness, contentment... Not to mention the crazy amount that I've actually learned about the body and medicine!

Hang in there!

--
Tried and rejected: Asacol, CortEnemas, predisone, AZA, 6-MP, MTX, Remicade, Humira, Flagyl, Cipro
Currently: Prochymal trial and weaning off methylpred
1 draining fistula/no setons
Posted 12/17/2007 2:59 PM (GMT 0)
Laura,
I here ya girl! I'm also sick and tired of being sick and tired...I especially relate to what you said about not making plans because you don't know how you will be feeling that day. That happens to me a lot...people get annoyed because I don't commit, I tell them that I will try to make it but can't guarantee-depends on how I'm feeling. That's probably why I don't get asked anymore to do a lot of things-so I've turned into a hermit homebody...work and home...that's about it for me...it's easier that way. Hang in there, you've got friends here!
Posted 12/18/2007 1:44 AM (GMT 0)
Laura,

Welcome to the forum! We all feel the same way you do. When I was new to the forum, one of the other members showed me this site: http://www.butyoudontlooksick.com/the_spoon_theory/

Granted, it's written by a Lupus patient, but it rings true for us as well. My sister has fibro, and she uses it as well. It's hard for people to not understand that we just can't take a pill and feel better, or that we're not just lazy. My husband and I know the bathroom locations of every store that we visit just in case I need it! We've kind of made a game of it...a "find the bathroom" game! :-) And I'm lucky enough to have a mother-in-law that has stuck up for me when other members of his family ask why I'm in the bathroom all the time or why "I'm being so lazy". They just don't understand that we only have so many "spoons" to spend a day!

If you lose friends, then they truly weren't your friends in the first place. My friends have come to their own understanding of CD, and they know that I'm not just "blowing them off" when I call at the last minute, very saddened that I can't go out with them. I try so hard sometimes, but my body just won't let me!

*hugs* Hang in there, and know you always have friends here that won't judge you, and that understand exactly what you're going through.

~Sway
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