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Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 8/15/2008 11:05 PM (GMT -7)   
I don't know how you all do it. I've only really been bad since 06. I read your forums and I don't know how it don't drive you crazy. I was talking to a family member and I was telling him I was going to MAYO on the 27. I can't wait to get there, as I told him I take something to stop me from D, and then I take something to make me go. I hurt all the time. I have one doctor telling me my adrenal gland is messed up, and I have another doctor telling me its due to the drugs so they won't do anything about it. I was going to one doctor and he was driving me crazy, it was to the point that everything was the Crohn's so he wouldn't deal with it.I had to deal with my GI and he's a 4 hour drive away. the thoughts of dealing with this for years,scares me so bad. I lost my job when all this started. Its to hard to stock, unload trucks, help people, when your running or sitting on the toilet. I've had problem for years sense 2000, but I could control it. But when I started going 20 times a day, I lost control. I was wondering if anyone knows what test they do at MAYO ??? I had the camera pill in the end of May, but it didn't make it all the way through. I don't care what test they will do, I was just wondering. I want some answers for why I always hurt, why I have a hard time going to the toilet, and if I will ever have my life back.

I'm so sick of not having my life. There are so many days I wish I could go to sleep and not wake up. I started going to a therapist, and I take a new drug for depression. My life is nothing but taking pills. and I'm not sure if they really help. How have some of you went years and years and not gone crazy ?? I'm sick of being sick. I just turned 50 and I was on a liquid diet. I was so sick I had spots of stool in me, but I still have the same pain and I was taking stuff to clean me out. My GI's nurse told me to take a pain pill. I told my daughter one of these days shes going to come into my room and all she will find is one big pill where once I was. It drives me crazy taking so many pill, my Mother died from cirrhosis of the liver and she got it from taking to many pills. Everyone keeps telling me I won't get it because, she self medicated and I don't. And my GI told me my liver test are fine but, I took care of my mother and the doctors told me hers were fine to.

I don't write much on here because I don't feel anyone wants to here some one gripe so much but, I feel if you don't want to read it its OK


I feel like this head spinning around and around turn turn will it ever get better?? I just want some control back in my life. I hate having to put my life in someone else's hands. I've been through so many doctors and I don't like the one I have now. I feel like I should not waist their time. They make me so upset, but I don't have a lot to chose from. I'm not getting refereed to MAYO I chose to go on my own. It will most likely piss off the doctor here, so I'll have to see what they will say once I get back I just hope I get answers.


Dawn rolleyes
49 Female
Dx June 07 Crohn's take asacol 2x3 a day , entcort 1x2 day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08
Dx Bipolar May 08


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/16/2008 12:18 AM (GMT -7)   
Dawn, I feel bad for taking an hour to reply to your post, but I wanted to think about what you said.

You worried that people mightn't want to hear you gripe. I don't think you need to worry about that. This is one of the few safe places where you can feel confident that, if you post about your feelings and your frustrations, people will understand.

I think what you're feeling is a perfectly natural response to being in pain for such a long period of time. I have spent long periods, like you, wishing that the disease would just finish me off so I could be done with it and get some peace.

I think the best way to resolve your feelings of hopelessness is to get your disease under control, and I think you're making a positive step in going to see the Mayo doctors. I'm not sure what the answer will be for you, but I've heard that they are world-class experts and I hope and pray that they will be able to find a way to bring you some relief.

In the mean-time, would you like to join us in our daily pacting? You don't have to do much; just getting out of bed can be an accomplishment some days; but it might help you to have a group of pacting friends to make contact with each day. We can be your own personal cheer squad and bolster you until you get to Mayo.

*hug* Hang in there, Dawn. This is a hellish disease to live with. I don't blame you for feeling fed up.

Ivy.
Co-Moderator Crohn's Forum.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 8/16/2008 5:43 AM (GMT -7)   
Dawn.
I truly feel or you hon, I think most of us on here has felt like you at one time or another...
I also noticed your age, forgive if I'm way of base and being a tad personal, But is there a chance you might be either peri-menapausal
or menapausal.? The reason I ask is, that about the age you are now I took a downward slide with my emotions. Even though I was
suffering with CD, I still felt that these feelings were different. I could've killed myself or murdered my husband just because he was
breathing!! So I took myself off to see my Gyny doc, and sure enough that was my problem. I took HRT for a couple of years, and felt
more human than I had for years....
Now I know this might not be your problem, and I know you're sick of doctors ( so am I) But It might be worth checking it out, it cant
hurt, and who knows it might help you with those terrible emotions.
I wish you luck, and please keep us updated Lol
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 8/16/2008 8:30 AM (GMT -7)   
Vicky, I Had a hysterectomy in 01 and I all ready had the hot flashes, mood swings, and all around feeling crappy. I wish it was that easy. I know what the problem is, but I don't know how to get a handle on it. I have to have control of my life. This CD I have no control. The doctors don't help, I'm not one to just trust in everything they say. So we have problems. I can't sit back and do nothing about my life. And its like they don't care if you have to sit and wait for tests to be run, or to give you the results. I hate that I always hurt and the doctors say its nothing!!! In my mind you hurt for a reason. At times I think they think I'm making things up. If they only knew how much I hated going to see them, or talking about D. Its like you lose all dignity and doctors don't care.
49 Female
Dx June 07 Crohn's take asacol 2x3 a day , entcort 1x2 day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08
Dx Bipolar May 08


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 8/16/2008 8:50 AM (GMT -7)   
Dawn--Hang on. We're with you--gripe away. This disease is a very frustrating one---it is the very definition of chronic. Doesn't cease. sigh. . .

I'm very glad you are seeing a therapist and would HIGHLY suggest you might call that therapist today. I shouldn't tell you what to do but it really sounds like you need a quick visit or chat and that you shouldn't be alone today. When my mom was really depressed about her illness, my dad's best man told her she had to "get out of her head." Her thoughts just kept spinning and spinning around her body and condition and she couldn't get out. It is advice I keep telling myself--especially when healing isn't happening at all and I'm just mush.

I know it sounds ridiculous when you are pooping your brains out 20 times a day and barely keeping it together, but do you knit? sew? paint? read? do sudoku? Can you call someone you haven't talked to in a while? Sort old photos on your bed? It doesn't have to be anything productive at all. Just anything to move your brain away from the "what ifs" and the "what is going ons." Ivy's pacting has helped me. It IS an accomplishment to get dressed--amen to that.

This disease is crazy, unpredictable and makes us nuts. How can I be pooping incessantly from 3:30-5am and then constipated at 8? What is in there? Right?

Please, please get out of your head today. I am sending good vibes.
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa, just started humira


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/16/2008 8:54 AM (GMT -7)   
(((NE NE))) I am so sorry you are having such a hard time right now. Please don't feel bad about venting, we of all people understand how you are feeling. Like ivy said, you are making a good decision in going to Mayo. I think they are going to be the folks who get you feeling better. They are some of the best, and I pray you find the blessed relief you are seeking.

I too am 50 and although my tummy is in remission, all the extraintestinal stuff is just killing me. I am anemic and always, always soo tired. And my joint pain makes me feel like I am more like 70.

Come here and talk with us and share what you are going thru. You won't get anything but love from us all.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


LuckyStar01
Regular Member


Date Joined Mar 2008
Total Posts : 54
   Posted 8/16/2008 11:30 AM (GMT -7)   
By Mayo I am assuming Mayo Clinic? Have you ever been there? If not you are going to L>O>V>E it!!! In MN or elsewhere?
You will be listened to. Put your questions for them on a piece of paper now.

Remember you are not alone! It is frustrating! Try to find something little that makes you laugh and start there.

Thanks for helping me feel that I am not alone! Don't worry about going on in your message you need to get it out! I'll listen.

Me: Diagnosed several years: w/Crohns, Colitis, Rhinitis, Tinitus, Fibromyalgia, Asthma & spent the past 2 yrs w/accidents: Tore my knee
then my left shouldter, my collar bone and right shoulder, suffered a crush injury to my right hand now permanent and finished off recently by
knocking myself clean out head injury and now my job is trying to fire me ater 18yrs. I can't keep up on my Dr's and I do get the run-around!
I totally understand where you are at but get rest and focus on the Mayo.
You hang in there. I will be thinking about you!

Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 8/16/2008 11:42 AM (GMT -7)   
I'm going to the one in MN. I live in South Dakota. Its around a 6 hour drive and I hope its going to be worth it. I'm seeing Dr Ed Loftuf. Here all the doctors do is give me the run around. They run test and never tell me what there for, or why, or what they found.To find out about the camera pill I had to call them to find out what they found. And to my GI he keeps saying its not that bad. I wish they could climb in me so I could tell them its not that bad....



Dawn
49 Female
Dx June 07 Crohn's take asacol 2x3 a day , entcort 1x2 day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08
Dx Bipolar May 08


~joy~
New Member


Date Joined Aug 2008
Total Posts : 2
   Posted 8/16/2008 2:43 PM (GMT -7)   
Hi, I'm new. I was crying while reading this thread. I feel the same way Ne Ne. I'm just so tired of it all.

It's nice to read that people care. I don't know anyone in my life that has Crohn's and that I can talk to about these things that really, really knows how I feel. My husband is terrific though, thank God for him.

Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 8/16/2008 3:15 PM (GMT -7)   
Joy , I know how you feel if it wasn't for my family I don't know what to do. Their the only reason I keep going on. They help me so much. I use to be the strong one, the one who always did everything with my girls, and now they do for me. They are a great support for me. They give me the encouragement to go on when all I want to do is hide in my room. I know I was blessed.


Dawn
49 Female
Dx June 07 Crohn's take asacol 2x3 a day , entcort 1x2 day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08
Dx Bipolar May 08


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 8/16/2008 5:46 PM (GMT -7)   
((((Hugs)))) I'm sorry your going through all this. It's not fun being sick and I'm sure really not fun having doctors that don't listen to you. I really hope you get somewhere at the Mayo. I have never been to one so no experience there. Come here and vent any time. We'll all listen.

P.S. My name is Dawn too!!! I'm a little younger though!! LOL :-)
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 15mg and stuck
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin twice a day
                           Cipro
No Surgeries
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/16/2008 7:11 PM (GMT -7)   
((((((((((((((NeNe and Joy))))))))))))))
1. know that venting about this darn disease is very ok with us
2. I think therapy and mayo is a good thing
3. Bear in mind some psych med can contributed to gi problems if you feel this is happening talk to your doc maybe they can help you out w/ changing them around
tc,
Navy
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Cookie's Wife
Regular Member


Date Joined Aug 2005
Total Posts : 299
   Posted 8/16/2008 7:28 PM (GMT -7)   
Trust me Dawn you are not alone. I was just telling my mom last night that I wish I could just start over. Quit taking all pills and start over. I hate taking so many pills/shots, especially since you really don't feel great when taking them. I too, have been very depressed because it just seem to hit me after 9 years, this is my life. Please don't ever feel that you can't vent here. That's the whole point of forums like this. We ALL have been there at some point and understand what you're going through. Hang in there (I know, easier said then done). I'll will keep you in my prayers!
~april
 

 



lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 8/16/2008 7:35 PM (GMT -7)   
Dawn,

Keep your head up. I know this disease can be frustrating but be thankful for being alive. I have been through some really bad times with this disease. I can't tell you how many times I've had accidents, and I'm only 26!

I was an Intelligence Officer before being diagnosed and about a year and a half after getting diagnosed. Unfortunately I had to leave my job b/c I could not control my disease. So, I learned to give up control. Trust me, it was hard (extremely hard for me), but you gotta do what you gotta do. I used to be able to race competitively and win. Now my body recovers differently and it takes longer for me to be able to do things athletically that I used too.

I exercise and ride my bike to try and have some normalcy in my life, and just hope for the best. Seriously, just keep your head up and hope that things will get better, because they will. Keep your head up, I've heard phenomenal things about the Mayo Clinic.

Please keep us updated!
turboemma.blogspot.com/


LuckyStar01
Regular Member


Date Joined Mar 2008
Total Posts : 54
   Posted 8/16/2008 9:46 PM (GMT -7)   
Hi I'm Back:

I went to Mayo/MN after Dr's spun me round n round like your little icons.
I knew something more was wrong. I had spent twelve years in confusion until I
went. The place is huge. Definitely and experience. I came back with answers.

Again, write a specific list of questions to ask. When I was there I felt really listened too and respected.

I wish I could go back for my followup care. Let us know how it goes and
Good Luck!

I'm here in MN.

miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 8/20/2008 2:24 PM (GMT -7)   
Ne Ne,

I just saw your thread, and it hits home for me big time. I have been passed around to the doctors here in the Twin Cities and I am contemplating the Mayo as well. Vent away! We know how you feel (at least I do.) I used to be so strong, athletic and healthy overall. This disease has put my life on hold completely in just the 2 years I've had it. It is so frustrating. The drugs are scary. The tests are scary. Dealing with people outside of family that don't understand is frustrating. Working is near impossible. I used to not like having Diabetes. I'd give anything to just have that now. This is too much.

Hang in there, and I sure hope the Mayo helps. Let us know how it went if you are up to it afterward!
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
No meds at this time. (Don't agree with me.)


miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 8/20/2008 2:26 PM (GMT -7)   
LuckyStar01 said...
Hi I'm Back:

I went to Mayo/MN after Dr's spun me round n round like your little icons.
I knew something more was wrong. I had spent twelve years in confusion until I
went. The place is huge. Definitely and experience. I came back with answers.

Again, write a specific list of questions to ask. When I was there I felt really listened too and respected.

I wish I could go back for my followup care. Let us know how it goes and
Good Luck!

I'm here in MN.

Are you willing to let us know what they were able to find at Mayo that other docs had overlooked?
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
No meds at this time. (Don't agree with me.)


Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 8/20/2008 4:38 PM (GMT -7)   
miguelblanco, I figure I will let everyone know what I find out. I've said before to a lot of people that I come to here for a lot of support, I told my GI that I was on this site and He thought it was great. He even said if I have a problem and one of you know of a cure or what could help tell him and he will try it. I don't write that much but I will let you all know. I don't like to whine to much and there are so many day I get upset with how I feel, so I just read what everyone else writes, But it has helped me so much. I've learned what I can expect to deal with and what not. I've found everyone very understanding here. So I figure if I get help, what I find out might help someone else here.


Dawn
49 Female
Dx June 07 Crohn's take asacol 2x3 a day , entcort 1x2 day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08
Dx Bipolar May 08


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 8/20/2008 6:06 PM (GMT -7)   

((((Nene)))))

I just logged on, and read the whole thread.  I also want to add my support.  this is such an honest and true forum, and we will understand and care when you "gripe".  You can be excruciatingly honest, too.  I think that no one has any dignity left, anyway, with being Chronies,

I think that chronic pain is so hard to comprehend,and the doctors do feel powerless when faced with a patient that they can't help.  Sometimes they will react by withdrawing or seeming to minimize the patient's distress.  I'm not making excuses, but just trying to help you feel a little less rejected.

please keep posting.... yeah Pix


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/20/2008 7:51 PM (GMT -7)   
Nene..
I'm so sorry you're feeling this way right now..It's astonishing how horrible this disease can be isn't it? I hate that anyone has to go through these things..I think it's so wonderful that you're still pushing forward though. I hope I will be able to do the same. You seem to be staying so strong in spite of it all. I really hope things get better for you. Or rather, I know they will!! Here's to you having better days after all of this!!
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


kam#7
Regular Member


Date Joined Jun 2008
Total Posts : 125
   Posted 8/20/2008 7:52 PM (GMT -7)   
((((Hugs)))) to all...I am soooooo touched after reading all of these responses. I am so grateful that I found this site.

Dawn - I have felt the same way. Chronic pain zaps the spirit of a person. It is SOOOO hard to deal with at times. Please know that you are not alone and we are all here to share our experiences and sometimes those experiences are awful and that is OKAY.

I have no doubt in my mind that you will find solutions at Mayo. I go to a top rated GI here in Chicago and that has made ALL the difference. It is vital that you get the best help available....that drive will be worth it!

My prayers are with you tonight. PLEASE keep us posted.
KAM

35 year old female - Diagnosed w/Crohn's 2002 - Surgery 2004

Currently taking: Pentasa, Entocort, Imuran, Immodium, Zoloft, Wellbutrin, Seroquel

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