Crohn's Disease Forum » Your Story » 5 years of fear

07-03-2017, 10:48 AM   #1
Join Date: Jul 2017
Location: Fort collins, Colorado
5 years of fear

I have been admitted to the hospital 7 times sence April been in the ER 9. If you love your family and yourself please go to the doctor if you are in pian. I have hidden my pain for 5 years.I told myself it's food alergies,it's bad gas just keep going, keep working, the constant pain is not that bad suck it up. 5 years where I let a disease slowly rob me of my life all due to fear. In March I started throwing up at least every other day ,in one month I lost 30 lbs. Still horrified to go to the doctor not to mention working 60 hour weeks with no insurance. The morning of April 4th I woke up in so much pain I couldn't move just cry and throw up. My husband, who has watched all of this listened to me when I lied and said its not that bad,had had enough literally picked me up and drove me to the hospital. Within an hour they came back with Crhones and fistulas. Not to mention also a room full of doctors telling me I'm lucky to be alive . So most of you guys know the drill , we put in a port, I'm getting iron infusions and Remicade while taking a slew of medications pain killers etc. I had to quit my job which was my life I have worked 40-70 hour weeks sence I was 18 started working when I was 14 (I'm 32)this is the first time in my life where I'm not working. To say I feel lost and useless is the biggest understatement. We had to break our lease on the apartment, move in with my father in law and are in so much debt I have no idea if we will ever get out from under it. The only thing keeping me going is my husband and family . So I have made it through the first 3 infusions of remicade still in pain , I keep building a tolerance to the pain meds so half of my doctors think I'm now an opiate junkie. I'm reaching out on this forum becuse I'm starting to question why I'm putting myself and family through this if I'm still in constant pain, I'm tired and getting scared more and more each day of the pain I'm putting them and myself through . I'm horrified by the way I have ripped apart my husbands life ,his finances ,his social life . We wanted children SO bad now that will most likely not happen .All I'm needing is someone who is not a doctor or nurse ,someone who has this disease to tell me it will get better, that the constant level 5 pain will get lower . I know there is no cure,but some sort of hope of a remission is all I'm looking for. You are all strong beautiful people thank you for reading my story
07-03-2017, 11:01 AM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome. I am sorry for all you have been through. I have had bad pain from the Crohn's disease. There are people on this forum who are currently in remission. Everyone here is very supportive. Come here anytime.
07-03-2017, 12:20 PM   #3
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scottsma's Avatar
Join Date: Jan 2012
Location: Tynemouth, United Kingdom

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I'm so sorry you have to be here,but of course you're welcome.You're having a really bad time but you can come through this.Lots of people struggle at first,and do struggle for a while until they and their medical team find something that works for them.It's all over-whelming in the early days,and as we're all different,it's trial and error I'm afraid.But most of us finish education,hold down a job and get pregnant and raise a family.So please don't lose hope and be kind to yourself,for as long as it takes.Just be thankful that you husband took you to the hospital when he did.Sending hugs and understanding.
07-03-2017, 03:30 PM   #4
Senior Member
Join Date: Sep 2009
Hoping you get better now. You are also in colorado so it might be easy for you to get medical marijuana! There is a forum section on this website dedicated to MM where a few people have found relief with it.
Learn How Fecal transplants restore good bacteria that regulate inflammation to induce remission and how it has potential to be a cure for IBD in the future. Follow the link below.
07-03-2017, 04:29 PM   #5
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Jabee's Avatar
Join Date: Oct 2016
Location: Massachusetts

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Gosh you're having a tough time. Have you told your doctors you are still in a great deal of pain? As for pain meds, if you use them properly you should be able to taper down--when the crohn's is no longer active. It took me a long time to get my last flare under any sort of control; I was on serious pain medication for seven months. Try not to worry about that aspect of your recovery. As far as the medical debt goes, there are programs that can help. If you went to a non profit hospital there are all sorts of ways that debt can be reduced. I read a very long article about this a few years ago. I'll see if I can find it. Definitely work with the hospital: get a copy of all the charges. Hospitals use something called the "chargemaster" to determine fees. I've attached a couple of articles about it.

For now, try to focus on your recovery rather than the bills. You need all your energy to get better. There are also patients with crohn's who have had children. There should be some threads relating to getting pregnant with crohn's.
07-04-2017, 11:05 AM   #6
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Bufford's Avatar
Join Date: Dec 2015
Location: Northwestern Ontario

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You are far from being alone, many of us had our lives robbed by this disease and have walked through long vallies of darkness. All one can do is keep going and find remission. I have had good days and bad ones. Today is not so great, but one just has to manage. Remember when its bad, that there will be good days, hope is a good friend and keeps me going.

Last edited by Bufford; 07-05-2017 at 09:56 AM.

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