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Tue, November 15, 2016 12:48 PM

Hi everyone I have servere Chrons Disease and my question to you all is Does any of the Medications help you? Do you ever feel normal in your body? Do you feel fine after you take your medicine ? Because for me I've tried almost majority of the medications and I always feel the same I cannot tell a difference in the medications honestly I'm always in pain and the pain isn't always really serious but it's PAIN I always feel, like I can feel everything in my body especially in my stomach, I can feel everything moving and I feel stomach aches 24/7. I feel like the only thing the medications do is stop the diarrhea and nausea other then that I'm dealing with pain 24/7 even if I just drink water anything that goes in my body I feel it and it hurts and it comes right back out so it's like I'm not even getting the nutrients that I need But I just wanna know does anyone else feel the same ?

FPO raynamills97
Joined Nov 15, 2016

Tue, June 27, 2017 8:10 PM

Reply posted for stackv.

I argue at the television while they debate the opioid to heroin epidemic and shake my head. I hate the pain pills but I am often in pain be it my belly or my aching bones or a random migraine. I don't understand how an employer could be ok with prescription narcotics in a drug screen. If there were employers who were okay with it as a method of pain management I would smoke all day. It takes effect in about 5 minutes versus the 30+ minutes for my snail like digestion. There are no withdrawals or sleepless nights. Excellent anti nausea. All narcotics change your pain perception and so does marijuana. I live in a progressive state but there's still a ways to go. It can be prescribed but obtaining and possessing it falls in a gray area between local and state. But if the option is there legally I would second the motion. Im not in the position to partake but when I couldnt work and was at the severe stages with my Crohns it was absolutely my go to. I was well into adulthood, but it was something my parents approved. They had seen me in so much pain they could accept anything that would help me rest and promote an appetite. It was a ritual to smoke and wait for the nausea to subside so that I could eat my food at room temp I might add.

FPO manAd78
Joined Jun 26, 2017

Tue, June 27, 2017 7:52 PM

Reply posted for Mat.

Wow. That's so my routine. Cakes, pies, cookies, ice cream, cereal, you name it. The cakes and ice cream have finally caught up with me weight wise though. But it's a relief because I was a total waif. Everyone wanted to see me eat. It's a complete contradiction of every nutrition article or guideline. I call myself opposite woman. If it's deemed healthy for most then I should stay far far away. Anti home remedy. I'm pretty sure the benefit of sweets is that it triggers my happy place. My diet is so bland and uneventful that the sweets are like magic. I've also learned to mix it up more often so my body doesn't get used to it and begins to resist. I worry now because I'm beginning to flare and that my body will begin to feed upon itself and i will be back to skin and bone.

FPO manAd78
Joined Jun 26, 2017

Tue, June 27, 2017 11:21 AM

Reply posted for raynamills97.

I have found a few things that work. Eat very small meals. When get hiccups and reflux take milk of magesia. It allows your stomach to empty. Take daily antfungals (candidase on Have an emergency kit for flare ups. Budesonide or lomotil. Eat and drink what you want, just small portions

FPO capuchin
Joined Dec 22, 2016

Tue, May 02, 2017 5:58 PM

Reply posted for raynamills97.

I definitely identify with the feeling that there is no dramatic change in how I felt when I was on prescription medication and when I was not. The most important thing for me has been how closely I monitor how I eat and even then I still believe some days are a toss up. 

I stopped taking the prescription drugs that I was given because they didn't work. I think the pharmaceutical industry is missing a HUGE potential benefit from the illegality of cannabis. These pills have negative effects on your liver and kidneys and for most people I talk to, they don't even alleviate pain. 

I'm not sure where you are located or if you have access to cannabis, but it is worth a try. Cannabis is never going to manipulate your body the way that prescription drugs will. 

FPO stackv
Joined May 2, 2017

Mon, May 01, 2017 10:09 PM

Reply posted for raynamills97.

I have crohns in my stomach. Here are some things that help me. For medicine- My Dr. has me on Mercaptopurine. It's an immune suppressant that takes some time to calm the crohns but then works well for me. I use Dexellant for heartburn, acid, and ulcers. Many problems for me were solved with dexellent. When things get rough I have to get the prednizone (steroid) shot. Food- Cereal works well for me. The grain is good for digestion, milk calms acid, and sweet cereal helps with nausia. After big meals I eat a little candy or something sweet and it calms the nausia. When I feel weak like I can't rise above my symptoms I eat a lot of cake. I don't even like cake that much but it stays down and helps me pit weight on. For some reason gaining a few pounds always helps me recover fast. Everybody works differently but I hope there's something there you can use.

Joined Apr 26, 2017

Wed, April 26, 2017 9:05 AM

Reply posted for selfhealingproj.

Hey there!  My wife has UC with pyoderma gangrenosum.  She recently recovered from a cdiff infections and is also on LDN and other supplements.  I just wanted to make sure I read your post correctly - did the FMT really clear up the pyoderma?  How bad was it and how long did it take to clear up?  Are you off other medications and only on alternative medicine now?  


FPO jeremyesther
Joined Apr 26, 2017

Fri, April 21, 2017 9:35 PM

Reply posted for selfhealingproj.

Could you let me know of that study. I have had crohns for years and just had most of my large intestine removed.

FPO Cblueangels
Joined Apr 21, 2017

Sat, March 04, 2017 9:58 PM

 Reply posted for raynamills97.


I used to have the same feelings when my UC was really active. The unsettled feeling, like twists and turns in my stomach. Have you tried any alternative treatments outside of medication? Have you found any success with that route? I know, for me, acupuncture has really saved me. I also was really lucky and was part of a study involving FMT, fecal microbial transplant October of 2015 and it has cleared up some extra-gastroinenstinal inflammaton. I got pyoderma gangrenosum for three years and that cleared up, along with the majority of my UC symtpoms. I do take a maintenance drug call low-dose naltrexone, that gave me instant relief when my symptoms were really bad, and now just keeps me consistently feeling well. And a couple supplements, which I would be happy to share in more detail, if you are interested in knowing more.

I just wanted to pass along my positive results from the FMT (I had two transplants) because it has really changed my life. I was going to the bathroom probably more than 20 times a day when I got the treatment. Now, I am going two-three. Not everything is back to normal; my body is probably a bit more sensitive than a "normal" person's. But, I don't live afraid to leave my home anymore and I have been able to lead my life in the way that I want. It's be really life altering.

Anyway, there is a clinical study website, and I found an active study recruiting patients now. I'm not sure if it's in your area, but their funding may allow for you to travel to them OR you can search the database for a study closer to you. I know this form of treatment is gaining popularity, so I would keep checking in.

For me, there was and still is a very important emotional and mental aspect to dealing with my health. If you ever want to talk more, I'd love to hear your journey.

FPO selfhealingproj
Joined Mar 4, 2017

Sat, February 25, 2017 11:12 PM

 Reply posted for raynamills97.

Yes I have the same thing, as soon as something bothers stomach it'll move to intestines- better be a bathroom nearby. I have moderate Crohn's and I took prednisone, I'm now on pentasa. Not sure if it would be as helpful for severe but worked very well for me.

FPO love2shop21
Joined Feb 25, 2017

Thu, January 12, 2017 10:30 PM

 Reply posted for raynamills97.

Yeah, now i have been better than before, but I'm still not feeling like i did before crohns. Im almost always tired or having some sort of crohns related issue everyday. The doctors try to help but they don't have crohns so i feel like they are just trying to fill in the blanks. Sometimes i find its just easier to not even get out of bed.

FPO casey5527
Joined Jan 12, 2017

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