Crohn's Disease Forum » Your Story » 27 years old... I've had Crohn's longer than I've been healthy.

12-26-2012, 06:06 PM   #1
amandaerin's Avatar
Join Date: Dec 2012
27 years old... I've had Crohn's longer than I've been healthy.

The past 14 years have been hell, okay... maybe not the past 14 but certainly the past 7.

I was diagnosed on my 13th birthday after being sick for about 6 months before hand. Before I was diagnosed, I was defecating pure blood about 15 times a day. My sisters and I would have to battle for the bathroom to get ready for school. I kept telling my mother I was sick, and she kept insisting that it was probably just stress. I went to school for the first day of 8th grade, but not the second. I went on the third and kept blacking out so I went to the nurse. She insisted that somehow I was faking the 104 degree fever and needed to go back to class. After some arguing and choice words from my group of friends, she sent me home insisting that I'd probably be expelled for my foul language. My mom takes my temp, calls the doctor, sticks me in a cold bathtub and proceeds to call the school and scream at the principal... needless to say... I didn't get expelled...

My disease was rather well managed once I started getting treated... I hated the fact that prednisone made me puffy (really makes you feel pretty at those school dances), but at least I wasn't spewing out blood from any orifice possible.

I got in a car accident at 17 and broke my neck... this took me out of remission. I had 6" of small intestine resected when I was 19 right before Christmas as a last resort. It put me into remission for a couple years. When I turned about 21, the stress from college and an abusive relationship sent it spiraling out of control. I was no longer able to see my pediatric gastro because I was too old and had been out of the practice for a couple years. I went through a trail of gastros who wouldn't listen to anything I said, couldn't put me back into remission, acknowledged this and refused to do anything about my pain... and in fact labeled me as a junkie even though I had never abused my medications or done any drugs besides marijuana on occasion (I was in pain and couldn't eat... what was I supposed to do?). This sent me into a depression spiral and I had to be put on a 72 hour hold twice... which ruined my plans of working for the government and ended up losing my full ride scholarship based on academics (not a hand out for being sick) because I spent too much time in the hospital and couldn't pass my classes.

Due to the fact that they have blown almost every vein in my arms, I had to have portocaths... they both got infected while I was hospitalized because the nurses didn't sterilize my chest properly or wear the masks. Whenever I have to get fluids I get asked when the last time I did heroin was because of the track marks on my arms from the IV's... when I answer never... they don't believe me.

Now I'm 27, on disability, engaged (can't get married because it would take away my benefits), and 7 months pregnant (I was told I couldn't get pregnant). This pregnancy has been hell. They keep doing comprehensive drug tests because they don't believe that I don't do heroin (I've never tested positive). I was on Fentanyl patches before I got pregnant and switched to Percocet when I got pregnant. I never get to see the same OB at the office I go to and none of them have the same opinion on how to take care of my Crohn's and pain. I feel lost. They have turned what is supposed to be one of the happiest times of my life into sheer hell.

I've never been to a support group because I didn't want to deal with a bunch of people complain and cry about things I handle with ease... so I'm not here for sympathy... I'm here for advice and maybe someone to vent to.
12-26-2012, 06:22 PM   #2
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afidz's Avatar
Join Date: Jun 2012
Location: Mckinney, Texas

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Can I ask what country you live in? (in regards to the disability)
I am going to tag AngryBird, she is also pregnant, maybe she can give you advice on that.
Its awful that you get treated like a drug addict, it must be hard to deal with, especially when you are already feeling sick. I might be wrong, but they wouldn't give a drug user a port, so that would be the first clue to you not be a drug user, the second being the reason you need a port is because you don't have viable veins..I swear the audacity of people in the healthcare world!
There is a chat room on this site, feel free to come in and talk, we are always ready to listen!!
Congrats on the baby and engagement, is it a boy or girl?
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Asacol HD
12-26-2012, 06:42 PM   #3
amandaerin's Avatar
Join Date: Dec 2012
I live in the US, it took about 2 years to get approved... but only had to talk to the judge for about 10 minutes in the courtroom before he told me I deserved it.

I've had the same argument about the port/drug addict thing. They haven't wanted to put a new one in since I got mine removed a year and a half ago because the last infection almost killed me (strep and mrsa in my blood stream). After I have my baby, they are discussing putting one back in.

I'm having a little girl, who they say appears to be perfectly healthy Her father is so excited because he lost a child years ago due to the mother being a horrible person... she fought for custody because she wanted the child support she was getting (he was a child psych so he made really good money) and then the baby got sick and she was too busy bar hopping to take her to the doctor... she found her dead from infection. He has been absolutely amazing because he understands pain... he was diagnosed with Leiomyosarcoma 5 years ago and was told he had 6 months to live... 5 years ago... and now he is in remission... he just has to make sure he doesn't break his tumor open). Due to the fact that they keep changing my OB around with visit, my pain management has been sporadic at best... I was supposed to get 15 Percocets a week to help with the pain... but that was a month ago and I haven't gotten any refills. The first OB I had encouraged marijuana use up until the last month (to get it out of my system and avoid CPS issues) because she knew eating would be difficult and there are no studies that have conclusive evidence that there is any harm to the baby. My fiancee managed to contact NORML and they have agreed to support me if they try to take any legal action against me for testing positive (if she's born early)... so that's amazing.

I have been having issues because no matter how much I eat, I cannot gain weight. She is healthy and right on target for weight, but I haven't gained any weight since I became pregnant. I was told by a very "special" OB that they didn't care if I came out of this looking anorexic as long as Lily (my baby girl) was okay. I frequently just end up sobbing in pain, depression and confusion... while he's at work, I just stare at her ultrasounds reminding myself that it's worth it and try to see the joy in every little kick that stretches my adhesions. He gets home and just holds me until I stop crying. I never thought I'd be this lucky to find someone like him...
12-26-2012, 06:51 PM   #4
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Hi there and welcome to the community.

I'm so sorry to hear what you've been through

What medications are you on at present and what have you utilized in the past?

What are your specific symptoms at present?

When was the last time you had a colonoscopy and/or any imaging studies done such as an MRE or CTE?

With that, we can start to point you in the right direction.

All my best to you.
It's good to be back
12-26-2012, 07:10 PM   #5
amandaerin's Avatar
Join Date: Dec 2012
Thank you, hello to you

I'm currently on 10mg/kg of Remicade every 8 weeks, 40 mg of Prednisone daily, 2 prenatal vitamins daily, 20mg Prozac daily, and Phenergan as needed.

I've tried Cimzia, asulfasalazine (sp), Asacol, antiobiotics, Librax, various antispasmodics, colestipol (sp) and a few others I can't remember.

Currently, I have been having diarrhea about 10 - 15 times a day, nausea, vomiting, kidney pain (from cysts that the medications have caused), abdominal pain and random blood in stool.

I had my last colonoscopy about 10 months ago where it showed severe inflammation from active disease and extensive scar tissue. They can't do any new imaging until I have Lily. The extensive amount of active disease made the fact that I got pregnant even more shocking... it was supposed to be near impossible.

I'm on Kentucky medicare/medicaid right now so it severely limits where I can get care right now. I live on the border of Ohio and Kentucky and I'll be damned if I go to KY doctors... not that the doctors are horrible... there are just so many laws in KY that limit what doctors can do for you when it comes to pain management. For example: general practitioners cannot prescribe controlled substances such as pain medication and some psych meds, you HAVE to be referred to a specialist and they are REQUIRED by law to drug test you... which puts me in a precarious situation seeing as so many of my doctors have told me to take marijuana medicinally (off the record). Thankfully, they are in the process of legalizing it for medical use in my state so there may be hope in a couple years for better care.
12-26-2012, 07:21 PM   #6
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Wow, those kinds of symptoms while on Remicade AND 40mg of Prednisone per day is rough. I hope they have you scheduled for some imaging studies and maybe a colonoscopy as soon as possible after you deliver the little one. They need to get in there and see what's going on. If they haven't begun that discussion, I'd initiate it yourself. My guess is that you're heading for surgery based upon the finding of extensive scar tissue during the last round of tests and your not being responsive to the meds. I realize that may sound scary, but it'll likely be for the best and have you feeling better than you have in a long, long time.

One idea for you is enteral nutrition. Have you tried it before or has anyone discussed it with you?
12-26-2012, 11:01 PM   #7
Senior Member
Join Date: Jun 2012
Location: Houston, Texas

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Welcome to the forum and congratulations on your expectancy - even though she was a surprise

If your current meds have not put you in remission, ask your doctor about administrating to you 10mg/kg every 6 weeks instead if every 8. Do you have a relief of symptoms after your infusion, and then find yourself getting sicker the closer your are to your next infusion? How long have you been on Remicade?

Also, you could ask your doctor to prescribe you Marinol to help with your symptoms and if you should wait until the baby is born to initiate this.

Once the baby is born, perhaps you should consider running LDN concurrently with your Remicade. It has almost no side effects at all and has been around for many decades (also VERY inexpensive). We have a section about Low Dose Naltrexone in our treatment section.

With extensive scar tissue, you might not be able to avoid surgery (which would bring you some relief), but you would not be able to determine this without tests until after the baby is born.

Crohn's Disease Forum » Your Story » 27 years old... I've had Crohn's longer than I've been healthy.
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