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02-07-2017, 10:29 PM   #1
bowlerr
 
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Hi everyone. I just got diagnosed with Crohn's on Jan 1st after a trip to the ER for horrible abdominal pain. Since my first episode, I have had a couple other pretty bad days. I actually just had the colonoscopy done to give the definitive diagnosis on Feb 3rd. Thankfully doc said I did an awesome job with the cleanse and he was able to get a real good look. I ended up having several polyps removed and he also said he could see various areas of ulcers. Significantly, he said that right now the majority of it seems to be confined to the last segment of my small intestine, with nothing besides the polyps and some ulceration in the large intestine. So that was all on Friday, went home, ate some eggs and toast and went to sleep ok. Then Saturday I didn't eat enough because honestly I am deathly afraid of eating almost anything, but I made some more eggs and toast Saturday evening. As I was eating, I suddenly got hit with a shot of pain that probably went up to an 8 on the pain scale briefly, then settled back at a 5. As the evening went on, I kept getting the shots of pain, so I finally broke down and went to the ER just after midnight when I couldn't handle it anymore. Been there until today, Tuesday, when the released me, but not before they told me they saw something called a fistula on my CT scan. Sorry for the ramble about that but I have not too many people I can talk to about this. OK, quick summary... Diagnosed Jan 1, 2017. Does NOT seem to be close to under control yet. Current medications are Pentasa, Budesonide, Prednisone, Protonix, and Oxycodone that I just got for pain if needed. Next appointment with my GI is on 2/15, pushed up from originally 3/1.They were talking about working to put me on Humira, but I checked what my insurance would cover and there is absolutely no way I can go on it. ($1230 for two autoinjectors). My only hope for that is to get it from the VA for a price that is remotely affordable. I'm scared, I can't hardly seem to find anything I can eat, I'm practically just waiting for the next attack. This looked like a good place to come, so here I am. Thanks to anyone who takes the time to read this and any words anyone might have for me.
02-07-2017, 10:41 PM   #2
ronroush7
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I am sorry that you have the disease. Pentasa only hits the surface of the disease. You could try to keep a food diary to see what foods agree with your system.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
02-07-2017, 10:54 PM   #3
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Hey Ron, thanks, I'm sorry for you too. I had seen you posting on other people's threads and wondered if you would see mine too. I was born and raised in Vienna myself. Lived on Locust St SW. I had been doing a food diary for the past few months because I was trying to lose weight, but honestly I really started slacking off on it. You are 100% right, I do need to get back to doing it. I'm just so scared to eat hardly anything because I don't want to go through the agonizing pain. Luckily work has been and continues to be extremely understanding. I'm just so scared and alone out here in NM. My one constant support is my diabetic dog who means the absolute world to me. I like to say I've saved his life a few times and he's saved mine a few too, so we're pretty even.
02-07-2017, 10:56 PM   #4
ronroush7
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I live on Locust Street SE. My wife has a service dog and he can sense when I am not feeling well.

02-07-2017, 10:58 PM   #5
ronroush7
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You could also try eating bland foods like Apple sauce, toast ,rice and bananas. Thanks for serving in the military.
02-07-2017, 11:03 PM   #6
bowlerr
 
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That whole area has grown so much I hardly even recognize it when I come back. My house and pretty much every house on my block got demo'd and replaced by the McMansions. But good things I remember I know you would know include Johnny's, loved going there, worked at the old Blockbuster Video at the end of Locust St, worked at AJs Sports Stop as a teen, heard that was about to finally be getting wiped out to put in some apartment or something. Graduated from JMHS in 1998.
02-07-2017, 11:07 PM   #7
Ricky_V
 
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First of all, I would try Remicade first because infusions every 8 weeks are better then painful Humira shots in your stomach. Second, both of these drug companies have programs that allow you to pay five dollars per treatment if you have insurance. Work with your GI's office to get on the Remi-Start program. Also make sure you have a GI that is very experienced in crohns.
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Renee (23) dx 9/15 - Status: Feeling Good

Current Meds:
Remicade 7.5mg every 6 weeks
6MP @ 100mg /Day
Omeprazole
Vitamin D2 50000iu /Weekly (Prescription)

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Multivitamin
Caltrate
Vitamin D3 1000iu /Day
VSL Daily Probiotic
Organic Apple Cider Vinegar

Failed Meds:
Humira

Gall Bladder removed 4/16

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Julia (20) dx 6/08 - Status: Remission 9yrs
Current Meds:
6MP @ 100mg /Day

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Multivitamin
02-07-2017, 11:18 PM   #8
bowlerr
 
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Thanks for the info Ricky_V. I'll make sure I mention that. In the drug induced haze of me being in the hospital I think I remember the colo-rectal surgeon saying something about starting me on Imurin I think it was called, leading into going on some type of biological. I think I remember reading somewhere that the Remicade can have some real nasty side effects. Any knowledge about this?
02-07-2017, 11:24 PM   #9
ronroush7
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Just for me, personally, I was on Remicade twice. I took myself off because it was expensive. That was a mistake and I wasn't aware of Remistart. My doctor started me back on it about seven months after surgery. By that time, my body had built up a reaction to it. I had to have surgery to have a lesion removed from my scalp. There are people on the forum who have been on it successfully for years

02-07-2017, 11:34 PM   #10
bowlerr
 
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I'm definitely going to remember all of this for my appointment next week. How does the infusions work? Is that where you go to the hospital and they give it to you in an IV? I'd have to see how my insurance or the insurance plus Remistart would cover it, because I just don't have thousands of dollars sitting around just waiting for this.
02-07-2017, 11:35 PM   #11
bowlerr
 
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And I just hope I can make it to the appointment without having another bad flare. Although with the Oxycodone at least I have something that can maybe help control the pain.
02-07-2017, 11:37 PM   #12
ronroush7
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Yes. You go to the hospital and they give you infusions. They gave me Benadryl and Tylenol to ward off any reactions

02-08-2017, 12:57 AM   #13
bowlerr
 
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I think I could live with that.
02-08-2017, 08:56 AM   #14
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Any outpatient chemo center can do the infusion. My daughter uses the fast method and the infusion takes 1 hour.
02-08-2017, 11:49 AM   #15
cmack
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bowlerr,

Welcome. I see you have already met some friends on here. Right on. Thank you for your military service, not only for your country, but for the entire free world.

when I get those terrible cramps I try to have broths and soups. Stuff that digests easy gives your insides a little rest. Low fiber right now will probably help.

Hoping you feel better soon,

cmack
02-08-2017, 02:06 PM   #16
bowlerr
 
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So an update for this morning. Admittedly it's just my first day out of the hospital, but I'm trying to stick to my exact med times, and so far I am not having any pain. I did a bit more reading on the fistula thing they were talking about. The exact note straight from my medical record says CROHN'S DZ W/ DISTAL SMALL BOWEL ENTEROCUTANEOUS FISTULA. Sounds pretty bad. I guess right now my worries are the fistula sounds like something they'd have to go in and cut out, and also that the last bout I just had didn't start until 24 hours until after I started eating again which would be in about 6 hours.
02-08-2017, 02:08 PM   #17
bowlerr
 
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Thanks for the words cmack. I'm just so confused and scared about all this stuff. I got a low residue diet list from WebMD and also am putting together a list on Excel of all the foods I eat so I can take both to my GI appointment next week to go over, assuming I make it that far without landing in the hospital again.
02-08-2017, 02:13 PM   #18
ronroush7
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Make sure they stay on top of the fistula so you can avoid surgery.

02-08-2017, 02:20 PM   #19
cmack
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Thanks for the words cmack. I'm just so confused and scared about all this stuff. I got a low residue diet list from WebMD and also am putting together a list on Excel of all the foods I eat so I can take both to my GI appointment next week to go over, assuming I make it that far without landing in the hospital again.
You are welcome.

Making a list of all the things you intend to discuss at your Doctors visit is a really great idea. I always make one too or I forget something.
Usually whatever I forgot is pretty important too.

Hang in there bud fistulas suck! Be sure not to tough it out too long and let things get worse. You soldiers are a tough bunch. Don't be afraid to go to the ER if you feel like you need help. If it seems like you might need medical attention usually you do. Just from my personal experience.

wishing you the best of luck,

cmack
02-08-2017, 02:33 PM   #20
ronroush7
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I agree. It was because of a fistula that had been there for a while that I needed a resection

02-08-2017, 03:00 PM   #21
cmack
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bowlerr,

My GP is a Veteran of Iraq and Afghanistan (2 Tours). He is a very smart guy and he recommended this site http://nutritionfacts.org/video/achi...rohns-disease/

This link is to a video(one of many that are available for free) and I personally have found a lot of useful info on the site. It is run by Doctor Michael Greger. He is smart and funny as well.

Hope this helps you,

cmack
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