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Posted: 8/29/2014 4:34:14 PM EDT
Well, I got the news this week. Been sitting on it for several days now.
Evidently I had the correct series of tests done over the last month or so. Thought I was going to have to have surgery to remove a camera pill.
I have suffered through various gastro related issues for most of my 40+ years. The last 4-5 have been awful with nearly continuous pain in my side. I can barely wear my IWB holsters because they are just  too uncomfortable from pain and bloating. Cutting grass or driving the tractor has been difficult, but I always have muddled through because that is what I do. I am one week into 40 mg/day of prednisone, and I am a bit crazy. While I am glad it is nothing worse, I have been a little dumbfounded by the whole thing.

Anyone one here with this issue. What recommendations are there for treatment. The only thing the doc has mentioned is pill or injection programs.  All of which require regular blood tests.  I am stressed and worried about what all of this means, although I am hopeful for being pain free for at least periods of time.
Link Posted: 8/29/2014 4:42:00 PM EDT
[#1]
Hang in there and try not to stress about it.  Research diets like paleo and SCD.  Make sure you're getting enough omega 3.  Get lots of good quality sleep.  Autoimmune disorders suck, but there is a lot of experimenting you can do yourself.

Prednisone is nasty stuff, but try to make the best of it.  Harness the extra energy and finish some projects.
Link Posted: 8/29/2014 4:51:15 PM EDT
[#2]
I really don't know much about current Chrones medicine.  I had it over a decade ago and was lucky to only have it in a small section of my small bowels. When it was really bad I threw up every day for a month and lost a lot of weight. It took a year to get an accurate diagnosis.  After the bowel resection i was worlds better and have been good since. The steroids were quite bad, but not as bad as when I had to come off of them to early once.  I hope you can get good help.  The doctors barely knew anything about the disease when I had it.
Link Posted: 8/29/2014 5:02:11 PM EDT
[#3]
A friend of mine has it and she has been through hell and back with it a dozen times.
The Doc told her stones are another issue from it and she was in the hospital
twice this year already for them.
I really feel for her.
Link Posted: 8/29/2014 5:09:37 PM EDT
[#4]
My pops has had it for 35 years. Fuckin sucks. He's had two diff operations taking out bad sections .

The prednisone caused him to gain 150 pounds. I don't know what he takes now, he's taken every medicine they make for it , they don't do jack for him.

Better luck to you OP
Link Posted: 8/29/2014 5:10:48 PM EDT
[#5]
That sucks op.  Had uc not chrons but treatment is similar.  forgot a lot of the stuff i learned but might be able to help you a little bit.

Anyways Its important you keep in regular contact with your doctor to let him know whats going on with your crohns and how the medication is working.  His  goal is to get you into remission and keep you there so don't slack off if your symptoms go away with your current medication.

Usually people decide on the injections when the pills aren't working for them. Humira  seems to be working pretty well in crohns patients.  Don't know a lot about remicade which is another injectable option.

Also theres a good chance if your crohns is mild you can be in remission for years with no symptoms. Good luck.

Eta:  as a poster above mentioned trying different diets can also help. Do some research on crohns forums and see whats working for different people.
Link Posted: 8/29/2014 5:13:59 PM EDT
[#6]
weed.   seriously.
Link Posted: 8/29/2014 5:14:11 PM EDT
[#7]
My brother has it. It can be pretty nasty at times. I think he uses remicade. I don't know to much about it, but I know he has had to have a couple surgeries because of it.
Link Posted: 8/29/2014 5:14:48 PM EDT
[#8]
Discussion ForumsJump to Quoted PostQuote History
Quoted:
weed.   seriously.
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Holy Fuck does weed cure everything?
Link Posted: 8/29/2014 5:18:22 PM EDT
[#9]
Discussion ForumsJump to Quoted PostQuote History
Quoted:
weed.   seriously.
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True, a coworker of mine has Crohn's and this is the ONLY thing that alleviates his pain.
Link Posted: 8/29/2014 5:20:28 PM EDT
[#10]
Rolando McClain (Linebacker- The University of Alabama) had chrons, and he is a complete badass. I'd google his struggles with it or reach out to him.
Link Posted: 8/29/2014 8:19:41 PM EDT
[#11]

Discussion ForumsJump to Quoted PostQuote History
Quoted:


That sucks op.  Had uc not chrons but treatment is similar.  forgot a lot of the stuff i learned but might be able to help you a little bit.



Anyways Its important you keep in regular contact with your doctor to let him know whats going on with your crohns and how the medication is working.  His  goal is to get you into remission and keep you there so don't slack off if your symptoms go away with your current medication.



Usually people decide on the injections when the pills aren't working for them. Humira  seems to be working pretty well in crohns patients.  Don't know a lot about remicade which is another injectable option.



Also theres a good chance if your crohns is mild you can be in remission for years with no symptoms. Good luck.



Eta:  as a poster above mentioned trying different diets can also help. Do some research on crohns forums and see whats working for different people.
View Quote
Just be warned that injectables/iv drugs can possibly cause progressive multifocal leukoencephalopathy. My brother is being tested after being on a variety of drugs for years due to crohns. He can't win the lottery but managed to possibly come down with PML. I've been trying to keep him positive and reminding him that most doctors know jack shit about UC and Crohns.
Link Posted: 8/29/2014 8:32:04 PM EDT
[#12]
Sent my best friend an email.  He is a member here and has had severe chron's for a very long time.  He will hopefully have some good advice and insight for you.
Link Posted: 8/29/2014 8:36:17 PM EDT
[#13]
Milk of Magnesia
Link Posted: 8/29/2014 8:39:38 PM EDT
[#14]
Discussion ForumsJump to Quoted PostQuote History
Quoted:

True, a coworker of mine has Crohn's and this is the ONLY thing that alleviates his pain.
View Quote View All Quotes
View All Quotes
Discussion ForumsJump to Quoted PostQuote History
Quoted:
Quoted:
weed.   seriously.

True, a coworker of mine has Crohn's and this is the ONLY thing that alleviates his pain.


Heroine would probably take the pain away.
Link Posted: 8/29/2014 9:48:20 PM EDT
[#15]
I took prednisone for almost year and it sucked the whole time. It was better than losing all or part of my guts though.
Link Posted: 8/29/2014 9:55:25 PM EDT
[#16]
Discussion ForumsJump to Quoted PostQuote History
Quoted:
Milk of Magnesia
View Quote


I have a nephew who tried that.  He said the result was like shitting a Hummel figurine.

1.  Humira
2.  Sterile hog whip worms....look it up....the research is solid.
Link Posted: 8/29/2014 10:14:49 PM EDT
[#17]
I found out I had it earlier this year after about a month and a half spell of throwing up at least once every day. It has died down a little bit, but not much. I still wake up feeling like ass most days.



The medications I've been given have all made me feel worse. I'm going down a laundry list of shit that just changes symptoms. I'm deciding if I want to live with it or if I want to have some form of surgery.
Link Posted: 8/29/2014 10:22:39 PM EDT
[#18]
I have colitus and have some idea of what you are going through..

It nearly killed me when it first hit around 15 years old.. Lost 65 pounds and my blood hemoglobin count was at 6. Found the right meds after a short time and have bad it under control sence.. I'm 33 now are rarely have to take meds..

The pain and discomfort involved is not something I wish on anyone..
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