So Tired of all the fighting

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margie

margie

Joined
Feb 21, 2011
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410
Will this fighting for help ever end. Such a struggle every day to just have the strength and will to even get out of the bed. I know that there are so many of you that are so much worse than me, but I can't help but to feel like just giving up at times. I know it is wrong, but just the way that I am feeling right now. So tired of always getting sick right after eating and then I feel like I throw everything right back out anyways, so I feel like I am just losing so much of everything that I eat, then I am hungry again. Even though I don't really feel like eating either just because I know what is going to happen afterwards. And the docs, well they are another story.

Does the fight ever end? Will I ever be able to get treatment that will help, better yet will I ever find a doctor that understands and can help me?
 
margie said:
Will this fighting for help ever end. Such a struggle every day to just have the strength and will to even get out of the bed. I know that there are so many of you that are so much worse than me, but I can't help but to feel like just giving up at times. I know it is wrong, but just the way that I am feeling right now. So tired of always getting sick right after eating and then I feel like I throw everything right back out anyways, so I feel like I am just losing so much of everything that I eat, then I am hungry again. Even though I don't really feel like eating either just because I know what is going to happen afterwards. And the docs, well they are another story.

Does the fight ever end? Will I ever be able to get treatment that will help, better yet will I ever find a doctor that understands and can help me?
Click to expand...

Hey Margie!

I was just diagnosed with Crohn's so I don't have much advice but I am praying for you. And you will find a doctor that can understand and will help! After five years of not knowing what was wrong with me, I finally got a great doctor who diagnosed me after two days in the hospital. My prayers and with you and stay strong. We all love and support you here!
 
Margie, I still have you in my prayers sweetie. If I were closer, I'd help you in your search. I'm only familiar with what limited resources we have here in Alaska. Hugs!
 
Thanks both of you, I appreciate the support. Think I am going to get back on the phone with the insurance company tomorrow and see if there is a doctor out of U of M that can help and accepts the insurance. Just don't know where else to go at this point. I have been to so many GI doctors in my area and all are the same way.....very arrogant doctors who either don't care or don't know enough about Crohn's.
 
Trust me, I know exactly how you feel. It's so hard to keep feeling positive sometimes. And yeah, there are alot of people on here who are sicker than you. But that doesn't make what you are going through any less difficult.

There's not much I can say to make you feel better, but I can tell you that one day, hopefully soon, you will feel better. You will go into remission. You will be able to enjoy food again, and enjoy your life again. You will find a doctor who takes your concerns seriously. It took me 14 years, but I found one. I consider myself very lucky. And I know one day you will too.

You're allowed to feel bad for yourself. You're allowed to have a couple days where you DON'T get out of bed, and you don't have to feel positive. Let yourself be sad and negative. Have a day where you get to say "FUCK IT. I feel like shit, and I'm not doing anything."
And after a couple days, you might feel alot better. You might not, but at least you had a nice rest and you got to relax a bit. Just don't try to tackle everything at once. This can be such a hard disease, and you need to take care of yourself before everything else. Good luck, and feel better.
:hug:
 
Thank You Samantha, I hope that you are right, but have been off treatments for over 4 years now and with vomiting at least a couple of times a day and being in the bathroom minimum of 5-10 times is not good, and I feel like I am starting to get weaker every day. And now, I don't know what is going to happen to my insurance. Supposedly I have Medicare as of August, but that would mean I would have to pay a couple hundred a month and I don't have a penny to my name let alone give out that kind of money. So I feel like I am in a real mess again. Here when I qualified for Social Security and have had Medicaid Insurance thought everything would be okay and that has been further from the truth as most GI docs won't even accept it. I just don't know what is going to happen or if I will be able to get any kind of treatment.
 
Awe Margie I am sorry you are feeling so ill.
What a horrible and vicious cycle this disease can be.
And, just as 25times says, there are always people more sick than you, but it doesn't make your pain, or what you are going through, any less valid!

Hang in there hun, and I hope you can find a caring physician that will actually listen to you!
Rest up and get your fight back!
There's no giving up....you have a book coming out soon! :)
:hang::ghug::ghug:
 
Margie, Sorry to hear this is still continuing for you. If it were me, and I was still vomiting daily and getting steadily weaker I'd be heading straight to ER for fluids and hydration. There they will have to get a doc to check you over. Can you go to an ER within the state but far enough away from home? That way your insurance is valid, and its a fresh doc to discuss this all with.
I still don't understand why they stopped your meds, and now refuse to allow you to go back on them? Are they saying they misdiagnosed in the first place?
When the money comes through from your book, will you then be able to pay to see a doc of your choice? Not ideal, but you obviously need answers.
Sorry for so many questions, just the mind boggles here!
 
Margie, you said before you stopped taking the meds due to heart palpitations? I know pred does that. Any way you could take them again just to see if they help? Maybe at 30mg instead of 40mg? And go to ER and get hydrated.

Misty
 
Tracy,
I know that I can't give up, because I am bound and determined to not let this horrible disease rule my life, and yes my book will be out soon, so I have a lot of marketing to do with it to get it off the ground with sales. Have you given any more thought to my ideas? Just curious.

Andrea,
I am now waiting on my primary care doc to authorize a referral to go see a doc at the U of M Gastroenterology Dept. I had been to this doc in the past and he seemed like he understand back then, so hoping that he can figure out what is going on with me. Could take 2-3 weeks before I can get an appointment with him and that is only if my reg doc will give me the referral.

Misty,
Could try to take the samples again, just afraid to after the chest pains previously.

Thanks everyone for all the support.
 
Well soo much for the GI doc at U of M, because turns out that U of M doesn't accept my insurance....Back to no doc and no treatment. I just can't seem to find any doc around here and U of M is at least 30 miles away from me and was willing to go there. So tired of the fight for treatment and seems that I am not getting anywhere. So Frustrated right now.
 
Any chance the Crohn's and Colitis Foundation of America can help you find a good doc locally? Might be worth a shot. If you can try it out, I think some of the drug companies can actually help with the cost of Remicade. I sure couldn't afford it on my own. I think it is Schering that makes Remicade.
 
Thanks for the advice shamrock, will try to talk to the CCFA tomorrow. I have never taken Remicade. I have taken Entocort in the past and apparently my insurance won't cover it for me.
 
Margie, will your insurance co supply you with a list of doctors and hospitals they will cover? That way you can work through whom you've seen and opt for someone new. Is a trip to the ER out of question?
Your medical service is alien to me- it's darn complicated eh?!
Hope you feel better soon so that you can enjoy promoting and marketing your book. It would be sad to have got this far and then not be able to go out and show your face with your book.
Hang in there, x
 
I feel for you Margie. My GI is an idiot who is actively ignoring and changing abnormal findings. All the GI's at local Hospital are happy to write it off as IBS since they don't want to admit their misdiagnosis in 2007.

Getting a second opinion will mean a long wait and alot of travel and money paid out.

CT scan results should be in soon (GI appointment 25th May). I pray that finds the answer or the fact I am passing blood on occasion wakes up GI, but my nerves are in shreds and I am just so ill.

I am holding out no hope I have been here many, many times :(
 
Andrea,
I swore to myself that this horrible disease will not rule my life. This book will be marketed and sold, because I already have people waiting to purchase it. Not to mention I have started on the sequel to the book and that is going to be even more enlightening in regards to how we are all actually treated by the medical field and what I have had to go through for so many years. I will not let it rule me. I have worked and am working to hard to get the word out. I had contacted my insurance company and there are so few that except the insurance and the ones that she gave me were ones already seen that patted me on the head and said I was fine or that I am well you know what that one said.

Stargirrrl
I sure hope that you get the answers that you need and that you too soon get the medical care that you need. For right now I am just trying to hang on with no treaments for a while. Nothing I can do until I can find a doc or get different insurance.
 
Like I said earlier, Margie. I will buy your book, and I do want your autograph in it. :)
 
Just take it one day at a time

I used to think a lot about it but now, I have left it in God's hands and live life to the fullest.
 
Thanks Margie, yes i'm trying to hold on too, getting the odd test slowly but no treatment in sight. Well, I am on a bunch of IBS meds (nearly 7 weeks now) that are doing absolutely nothing for me. And my GI was so convinced they would make me better :voodoo: Actually I thought they may ease things to a tolerable level since in 2007 I had some success with a similar treatment (which wore off eventually). But no change!
 
Andi,
Thank you so much for all of your support and I am glad that you are interested in my book and of course I will sign it for you.

Stargirrrrl,
I sure hope that things get better for you and that you start feeling better soon too.

richie,
That is what I am trying so hard every day to do, is to live my life to the fullest. In my way, it is in my accomplishments of writing what I go through as well as what others are going through every day in dealing with this disease and the way that we are all treated in the medical community.
 
Hi Margie..
I trully understand your situation as i'm in with the same one. Just a slight difference which is after eat you r running to the toilet to vomit but i'm running to the toilet so frequent for diarhea. I hv no idea on how to stop it...It has already been more than 2 mths...

Currently my doctor increased my prednisolone to 40 mg bd but i can't take it as i'm going to work and by taking the medications..I feel very weak and pain increases in my stomach n backbnone which makes me want to lie on the bed the rest of the day...But, i have no choice to go to work in order to pay for my medications...Therefore, i'm in a bad confusion...

Don worry...we r all in the same position...Just be strong as i know sumtimes its just so difficult...

Regards,
lily..
 
Margie, I hope you are doing okay. The doctors need to take the vomiting seriously. Your poor body is probably depleted of some of the vitamins and nutrients, which is probably compounding the situation. I'm worried, and hope that you are able to find a doctor that will go along with your medical plan and one that will be kind and professional with you.
 
Thanks Andi and Lily,
I am a fighter and I just get tired of fighting it every day sometimes. I know that I need to find a doctor, but don't even know where to look anymore and so I just deal with all of this. Called the insurance company and the names of the docs are the same as the ones already seen. So I have a dilemma going here and I just have to keep trying. I don't know if it will be any better but I will have Medicare in a couple of months. Until then, just hanging in here, about all that I can do for now.
 
Personally I've found that insurance through state aid has been pretty decent about covering almost everything I need. I know I'm in a totally different state, but most of the systems are similar.

I was one of the lucky (?) ones who was easily diagnosed at the age of 8 due to all of my (joint) problems moved to my guts, I dropped to 38lbs and my mother was diagnosed with Crohn's when she was 12. I did have a GI when I was 16 who told me that I didn't have Crohn's, had a chip on my shoulder and needed to be institutionalized. I had a small bowel resection within a couple months of that happening and I followed him out of a local amusement park glaring at him as he fled. He pulled his wife along with him and all I heard him say was that they had to leave and prey he didn't get slapped with a malpractice suit. Almost 10 years later he was covering while I was in the hospital. He stayed way over by the door and spoke very carefully. I'll admit I was an angry teenager when I came out of remission.

When I was in my early 20's I had an amazing GI down in Key West. He had Crohn's himself and we really worked well together. Sadly I moved and he's since passed - due to Crohn's.

I bounced around between GI's who were arrogant jerks who knew everything and I knew nothing about Crohn's, even though I've been diagnosed for 30 years and have done more research on it than most.

Finally Christmas of 2009 I was in the hospital - first Christmas I ever spent in the hospital, very shocking for me. Well, my GI was covering because he always covers Christmas being Jewish. I was lucky enough to be in the hospital at the right time. As soon as I met him I knew that he was the one. I have to drive two hours to see him which I don't mind except at 5:30am to get to my colonoscopy.

When you find the right GI, you know. I don't want you to fell worse, but 30 years of this and I've only had 3 great GIs and two are dead. And my beloved family surgeon had a mountain biking accident and is a quadriplegic!

It sounds hard, even insurmountable, but reading that you're getting a book published is pushing me harder to work on my book. So thank you!

What is your book and when is it coming out?
 
silvermander,
Thank you so much for caring and supporting me here in the forum. My book is one of my major accomplishments and it is about my life with Crohn's and Depression and life in general the way that I have to live it. The title is Vicious Circle A Hope For A Brighter Future and will be out sometime in the next month or so. It took me about a year to write about my story, but I wanted to do it in hopes that maybe telling my story would somehow help others to know that they are not alone with this demon we all carry inside of us. Part of the profits will be going to the CCFA for research. I have already started to write the sequel, but have a ways to go on that one yet. I will be posting on here when the actual book will be released as soon as I find out from my publisher.
Thanks again,
 
Hey Margie,

Only just seen that you are in a bad way, so sorry to hear it, i wish i had the money to help but sadly not.

Dig those heels in and make a lot of noise, for heavens sake someone must take responsbility for your care.

Lots of hugs
 
I keep reverting to my sports writing and my fiction writing. I just haven't had the intestinal fortitude (pun intended) to sit down and start from the beginning of all this.

I know it's something I need to do and have been collecting my medical records, all the way back to the late 70's. But it's so hard to even look at those records and there's some stuff in there that I don't want my parents to find out about (how close I was to death, that they did lose me on the table when I was 8). They either don't know or have lied to me when I asked them. I'm guessing the former as they don't do the latter much when discussing my health.

Basically what I'm saying, in a very indirect route, is that I'm impressed and proud that you wrote this book and found someone to publish it. You're inspiring me to start on some of my stuff that really needs to be written down and hopefully published at some point.

Thanks!
 
I think you are both inspiring. I love to write, but I've been busy with the babies, and kind of shying away from it. I hope you are doing okay, Margie. I think about you a lot sweetie.
 
Thank you everyone for all of your support. It took a lot of tears in writing my book, but I did it and am very proud that it will be in print in a matter of a few weeks and ready for sale. I am now writing my sequel to the one in publication now and this one that I am writing now, will be in more detail on the absolutely horrible care and testing that I have had to go through over these past couple of years. It takes a lot of committment and time, but it is so therapeutic, at least it sure has been for me. And with it, I will feel better just knowing that I will be helping to keep the research going, even if it is just a little bit at first, I have no idea how the book will sell or what will happen, but I will never regret writing it. With all of the stories that I have read on here that I am sure this next book will have a lot of a story both inspirational and informative that the book will hopefully be even better than my first one. I can dream....Right?
Anyways, I want to thank all of you here, I don't know what I would do if I ever lost the support of all of the friends that I have made in here. You have been so supportive to me and helped me through so much. And for that I am so grateful.
Thank you,
 
margie said:
....
Does the fight ever end? Will I ever be able to get treatment that will help, better yet will I ever find a doctor that understands and can help me?
Click to expand...

My husband has felt exactly how you feel. This is the only place I could find people that know how he feels and how I feel (I'm only his wife, no Crohn's).

It's been so discouraging the past few months. He does start Humira soon.

It surely sucks. Post in the forum when you need to, it's good to vent.
 
bruscar,
hahaha....so how are things with you?

SS410,
it always helps to know that there are others here that can be so supportive even though we are all going through our own hell. Carrying that demon inside of us is hard, but you are right this is the only place that I have found that I can actually say how I feel without being judged. You and your husband are in the right place for lots of support and to be able to vent when you need too. We are all here for you both.
 

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