Crohn's Disease

Aurelia

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#1
It's a bitch. I've been having symptoms probably since I was 15-16, but didn't get really bad until I was 25-26. A couple years ago, I got diagnosed finally with Crohn's, after many painful days and even more painful nights, and about 50 ER visits because I couldn't handle the pain. I had to have surgery last year where they took out the part of my ileum that was inflamed the most, and afterwards I started getting treated with Remicade. Right now, I'm actually not getting any treatment at all (like an idiot), and it's gotten worse. I know, I know. I need to go back to the doctor. I've been meaning to, and wanting to, but with my depression lately combined with my social anxiety and inability to make a simple phone call, it hasn't exactly been working out that way. Anyone else have this pain in the ass of a disease?
 

nobodyknows71

For a Phoenix to rise, it must first burn.
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SF Supporter
#2
Hi there. I don't have Crohns but my daughter does. She was diagnosed at 13 , she's now going to be 23 in a few weeks time. So far she's avoided surgery, she was on Pentasa after her initial diagnosis and six weeks of Modulen, which she was OK on for about 3 years and then she relapsed. She was then put on azathioprine and yet more Modulen, which lasted a couple of years and finally Humira injections.
She too has let her treatment slack. She hasn't taken anything since last August. She's doing ok at the moment but we both know it's only a matter of time before she relapses again.
Personally I don't get why she wouldn't carry on taking something you KNOW is working. She's told me on numerous occasions that the thought of surgery terrifies her.

It's a bitch of a disease. Please get yourself back to the doctor before you get any worse.
Take care
 
#3
Hope you can make it back to the doctor, but I also understand why it could be hard.

There may be some Crohn's community online that could have some helpful suggestions

I've read that if you smoke, quitting is supposed to help a lot.

You might want to experiment with not eating dairy, or foods with chemical additives
 

Aurelia

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#4
Thank you both for your responses. That's definitely a good thing that your daughter got diagnosed at an early age, nobodyknows71. It took me forever to get diagnosed because unfortunately, the hospital I kept going to was filled with a bunch of incompetent idiots. They could never give me a proper diagnosis, all they basically did was treat the pain and send me on my way. And it didn't help at all that my mother always thought I was lying and trying to get out of going to school or what have you every time I'd tell her that my stomach was killing me. So, I was basically on my own when it came to trying to find a decent doctor. And, by the time a doctor who actually knew what he was doing diagnosed me, it was so bad that surgery was going to be the only option. In the meantime though, while I was waiting on my surgery date, I did get prescribed Pentasa, as well. And it was helpful, if I recall. May71, yep, there are numerous foods that I've learned to avoid. I can't eat vegetables and fruits, anything with skin of any kind, nuts, overly greasy food, spicy food, and foods with a lot of fiber. For the most part, I know pretty much everything I need to avoid by now foodwise. But, if I come across anything I'm unsure of, the only way to find out is trial and error. As far as smoking goes, yeah, it definitely helps to quit from what I've heard, but that's not something I can do right now. Aside from the fact, even, that it's extremely difficult to quit, it also slows down your metabolism. And right now, methadone is slowing it down to a crawl as it is. I'm losing the weight I've gained, though, and I'm almost back to my original weight before I started the methadone clinic...so, to quit smoking right now and make that even more difficult than it already is, or even worse, lose it and then gain it back, I would absolutely go insane. So, not really an option right now.
 

Aurelia

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#6
Nah, I tried it, and I ended up smoking one cartridge faster than a pack of cigarettes. Plus, it's all too expensive anymore. I've had to switch to buying my own tobacco and tubes and making my own cigarettes at this point, which costs a lot less than buying packs or vaping.
 

Aurelia

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#8
Got about 4-5 boxes of gum that haven't even been opened yet. If I really wanted to quit, I'd give it a serious try. But, like I said, I'm afraid to. But, if you're talking about just switching to the gum or patch instead of using it to quit, seems kind of pointless to switch to something I don't like, just to still get the same nicotine in my body anyway. Pretty sure the gum and the patch both still affect Crohn's.
 
#9
Got about 4-5 boxes of gum that haven't even been opened yet. If I really wanted to quit, I'd give it a serious try. But, like I said, I'm afraid to. But, if you're talking about just switching to the gum or patch instead of using it to quit, seems kind of pointless to switch to something I don't like, just to still get the same nicotine in my body anyway. Pretty sure the gum and the patch both still affect Crohn's.
Wait, you're afraid of the gum or you're afraid to quit?

You might want to try the gum for a couple weeks, and see if it helps with the Crohn's. If it's just the nicotine that sets off Crohn's, then it won't make any difference, but it could be something else about smoking.

I think you can also get vapes and put the dry tobacco in. I think the pen vapes just take liquid, but there are vapes that are usually used for weed, that you could use for tobacco, I bet.
 

Aurelia

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#10
Afraid to quit.

And also, at this point and time, don't particularly need another reason to be miserable along with trying to stay clean off of illegal drugs. I'm not even sure how long it'll be until I snap and end up shooting smack again...let alone trying to quit tobacco on top of that. Like I said, if I gave it a serious try, I might be able to do it with the gum. But for right now, it ain't happening. Although, if I recall correctly from past experience, it didn't really make a difference with the Crohn's anyway. Either way, thanks for the input...it's just not something I can do right now.
 
#11
Hello, I have Crohn's disease and my entire colon removed with a permanent ileostomy. Hence the user name. I also have had it since I was 15, diagnosed at 18, worst and colon removed at 24. Trust me you don't wanna let it get worse. At the worst for me, it was all blood coming out, all the time during my 2 week transferred to a 2nd hospital admission (not including the surgery that was a few months later) and yet my body kept kicking. It was torture, I was dying but my body wouldn't let go. I am glad I lived. I'm now on Entyvio for maintenance which I wish they would of put me on years ago. Went thru all the meds including 'wonderful' Remicade, cimzia, humira, all the pills of course now I have long term prednisone use issues too. So be careful with prednisone. The doctors don't tell you how it can wreck your body. So use it sparingly, of course get 2nd opinions I'm no doctor. But been through a lot. Anytime you need to chat I'm here!!! Definitely something we can relate on.
 

moxman

The "Perfect Life" YouTube channel is neat
SF Supporter
#12
Hello

I also don’t have a colon due to severe colitis.

Are you still here, I would love to talk wit you
 

moxman

The "Perfect Life" YouTube channel is neat
SF Supporter
#13
Hello

I have colitis (?) crohn’s (?) or both (?) they don’t really know. Mine has been horrible lately and it’s been effecting me in a very bad way.

I had my J-Pouch surgery and removed 95% of my colon.
 

Aurelia

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#14
Lol. Wow, I saw someone replied to this and was like wait...how long ago did I post this shit?

Yeah, I'm still here. Unfortunately...
 

moxman

The "Perfect Life" YouTube channel is neat
SF Supporter
#15
Lol. Wow, I saw someone replied to this and was like wait...how long ago did I post this shit?

Yeah, I'm still here. Unfortunately...
I think you came just as I left.

Daughter is attacking me, lol silly goose. I’ll write more later.
 

moxman

The "Perfect Life" YouTube channel is neat
SF Supporter
#16
Yeah, I'm still here. Unfortunately...
The main thing is we are both still above ground. =)

How are you doing with your illness?

I’m struggling, I’ve been to see specialist in Chapel Hill. My VA (Veteran Affair’s) Doctor is not doing much. I’m having severe pain and sometimes I just camp out in the bathroom.

My illness seems to be what pushes me over the edge from just being depressed to suicidal. I just don’t want to be sick anymore.

I wish medical marijuana was legal in my backwards ass state.

There’s a link about my medical problems In my signature, you can’t see it on the app only the desktop version. Feel free to ask me any questions you might have.
 

Aurelia

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#17
The main thing is we are both still above ground. =)

How are you doing with your illness?

I’m struggling, I’ve been to see specialist in Chapel Hill. My VA (Veteran Affair’s) Doctor is not doing much. I’m having severe pain and sometimes I just camp out in the bathroom.

My illness seems to be what pushes me over the edge from just being depressed to suicidal. I just don’t want to be sick anymore.

I wish medical marijuana was legal in my backwards ass state.

There’s a link about my medical problems In my signature, you can’t see it on the app only the desktop version. Feel free to ask me any questions you might have.
I've been through this whole ordeal many times now, so I've done my research and all. I guess it's not too bad as of late, but bad enough to be annoying and painful at times, especially after eating. But it's not something I can't handle. Still, I need to get back to the GI. I have, since I wrote that first post, started treatment again, I mean. But then I stopped going again because other shit came up.
 

Ash600

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SF Creative
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#19
"A,D.P Biotics Research", emulsified Oil of Oregano cures almost all gut issues.

K
Perhaps it might, but people should be made aware of the need for caution in those who are pregnant or breastfeeding, have bleeding disorders, diabetes, and I would strongly recommend avoiding it for those taking lithium without speaking to their docs first as it can increase the levels of lithium leading to serious side-effects.
 
#20
Sure, Pregnant or breastfeeding or HIV, allergy, etc, is a standard stamp label even on aspirin. I'm lucky I have a healthcare background and don't have to worry (for me). And the public rarely listens to doctors or warnings anyway. We have diabetics eating chocolate cake! Are you in healthcare?
 

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