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Ever wonder what would happen if you didn't take your meds?

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Crohn's Disease
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Posted 9/23/2010 3:43 AM (GMT 0)
I hate meds....

Do you ever wonder what would happen if you just stopped taking medications and decided to never take them?  What would that long term picture look like?  If Crohns isn't terminal, does that mean it's not terminal only if you take meds? 

Just wondering what would be if I just let this disease take it's natural course.  I haven't been taking my meds. 

Posted 9/23/2010 4:03 AM (GMT 0)
The natural course of Crohn's seems to be to try to destroy your quality of life. Not all the damage that can be done is reversible.

Failure to absorbe nutrients, emergency surgery for abcess or stricture, fistulas, extra-intestinal manifestations, clots, etc.

I have no doubt that this disease needs to be treated by SOMETHING, diet or meds, diet and meds, whatever, but the natural course of Crohn's is not pretty. 

Posted 9/23/2010 4:55 AM (GMT 0)
I tried that once when I was 21.  I was convinced I'd get better if I just went on a liquid diet.  I didn't want to go on prenisone again, so I ignored the pain.  My intestines ended up rupturing and I needed a bowel resection.  Maybe they would have ruptured anyway.  I don't know.  I do know that I hate taking medicine, but I take it anyway. 
Posted 9/23/2010 5:01 AM (GMT 0)
I have already found out what happens and it was not fun. Just cause it is not terminal does not mean that you can't die from this disease. I nearly lost my life from a G.I. bleed and we have lost a couple here from complications. You can deny that you have the disease but it does not deny you. Diet alone will not control it because you have to control the inflammation that is being done on the microscopic level. Many of us start feeling good and start thinking that we don't need meds because we are feeling good now and so we stop. It usually takes a while but when you stopped taking the meds the disease is now unsuppressed and starts to work slowly. From there depending on the severity of the disease, your intestines become inflammed and scar tissue takes over sometimes slowly sometime very quick depending where your baseline was before. I have yet to hear of a person doing this and it ending good. Sometimes it is weeks, sometimes a year or two but it is always either surgery or hospitalization as the ending. If you obstruct due the disease you could perforate and death may happen. Sorry if I am a little more serious about it but I found out the hard way and do not want anyone to have to learn like I did that it takes meds and diet in combo to treat crohn's disease.
Posted 9/23/2010 5:32 AM (GMT 0)
do people count LDN as a valid med to be safe with?
Posted 9/23/2010 6:18 AM (GMT 0)
Please don't stop taking your meds, I know this disease is completely frustrating...I've had it for 19 yrs straight with no full remission ever in 2 decades...I'm either allergic or non-responsive to traditional oral RX and finally found altering diet, adding daily exercise, and taking the things listed in my signature for some relief, it's still not perfect or even remission but it's better than most of my past history of dealing with this DD...so believe me when I say I know EXACTLY how frustrating this disease is. If your meds are even helping you a little it's better than nothing...I find myself often daydreaming/living in the past when I was a healthy, happy go lucky person,laid back with very little cares in the world...my life hasn't been like that since getting sick in my early 20's (I'm 43 now) it's depressing and has affected EVERY aspect of my life and altered my choices in life/holding me back from experiancing many things that I'll NEVER get the chance to get back or try and experiance.

Don't stop taking your meds, if you think things suck now, I can pretty much guarantee you with crohn's, it can always get much worse.

Hang in there, we allknow what you're going through.
Posted 9/23/2010 10:22 AM (GMT 0)
Don't stop taking them...it's not worth the 'what if' skull
Posted 9/23/2010 10:31 AM (GMT 0)
I did -- BAD choice. Actually my diagnosis was taken away at one point and I wasn't on meds for 20+ years. Probs off and on, but mostly remission stayed (the reason for being told nothing was wrong with me). Then around 2002 I started to flare, it became uncontrolable, I lost 70 pounds the whole CD thing. Even though I've been on alot of different meds since then nothing is completely controlling my disease any longer. And because of long term inflamation at my original surgery site I had to have another surgery in Jan. of this year for a "very tight" stricture. I will always stay on some sort of maintenace meds.

Can you discuss with your doctor? Maybe you can change whatever is that's giving you problems. In the last 8 years I've been on everything from Remicade to pred to Imuran. Currently on Suflasalazine.

Although the disease itself isn't terminal you can develop complications that can be life threatening. Please reconsider......
Posted 9/23/2010 1:32 PM (GMT 0)
I am another who once thought they didn't need meds. I enjoyed a nearly 20 year remission without meds, but it ended UGLY!! I had to have an emergency resection that was quite traumatic for me. I hate taking pills too, but I will never be without meds again. Not only did I have to have 3 major surgeries in 3 years, but it took forever to get my disease back under control. So whatever you do, stay on your meds.

Jpnutritionist, if its working for you, then that must be a good "med" for you. I know not all have had success with LDN, but some like yourself are. Good luck!
Posted 9/23/2010 2:17 PM (GMT 0)
Im currently in between medications because the previous one failed and now I'm waiting for paperwork/insurance stuff for the new meds. So right now I'm on nothing and getting worse and worse. I'm 25, and feel like my 25th year of life was stolen from me. I will be 26 in a month, and I'm really sad that I'm not going to be better by then. I'm so nauseous all the time I can't make plans with anyone. I can't find any sort of food or drink that settles my stomach. My body is weak, and it's hard for me just to walk. (And I'm normally the type of person who loves working out, going to the gym, etc and here I am in pain just from walking down a few stairs.) It sucks not being on medication right now. Medications suck, they have side effects that suck, but they're worth it if they help your quality of life. Mine is just getting worse and worse right now.

My father always seems against meds and always pushes me to do more with diet, alternative methods, etc. He doesn't understand that while yes, medications have such awful side effects sometimes, they really are life savers. If some people can help their Crohns with these methods, then thats fantastic. But I think it depends on each individual.

Stay on your meds! Stay healthy and well! :D
Posted 9/23/2010 3:39 PM (GMT 0)
No offense to you, but seriously? Why in the world would you stop taking your meds? You say you hate meds - why? What about them do you hate? Are you dealing with side effects? Are they not working right? Maybe you haven't found the right meds. As someone who has dealt with this crap for 20 years, I can assure you that to some degree you need meds. If you stop your meds and things get out of control it's going to take a whole heck of a lot more meds to get your butt back in check. Sorry if I sound impatient, but I don't know your history and maybe all of this is new to you. Take it from those of us who have been there-done that. Don't stop taking your meds.
Posted 9/23/2010 4:18 PM (GMT 0)
I am having to stop my meds for a couple of weeks because I am having such issues from them that the meds just might stop me faster then my disease. No one I know outside of those who abuse substances enjoys taking meds everyday, but you do it to stop or at least slow the progress of your disease.
Posted 9/23/2010 10:01 PM (GMT 0)
I am in the group that hates to take meds all the time, but I can also say that I have been in the group that stopped them. It was not a good situation. When we moved to Arkansas 5 years ago for my job, I was without health insurance for 90 days. I had been diagnosed in July and we moved here in September. I was finishing up my 2nd months worth of Pentasa and was doing better when we moved here. I couldn't afford the medication without insurance ($600+ a month here), so I didn't take anything. When my insurance kicked in I spoke with my doctor (family practice) at the time and gave him a copy of my GI chart from Iowa. He asked if I was having any problems, I told him no. So he chose not to put me back on the medication and I didn't put up a fuss. In March of 2008, I started having some D and cramping. I was starting to lose some weight (which I needed to do anyway) and began noticing some abdominal pain. I put it off and thought I could handle it since I'm in the medical field (we really are the worst kind of patients). By May I had lost a good chunk of weight and was looking pretty good, the other symptoms were increasing. My wife started noticing and told me I needed to see the doctor. I got in with an internal medicine doctor, whose son has Crohn's, in late July. He started me back on meds and wanted me to see a GI in Jonesboro. (it was going to be 6 weeks to get an appointment). By September I was getting worse and still losing weight. I was admitted to the hospital in late September and transfered to Little Rock via ambulance to see a GI there. In October he wanted to start Remicade, and I knew I was dehydrated from continued vomiting and D. I was admitted to the local hospital and didn't leave for 3.5 weeks. During that time, I had two emergency resections due to perferations and got a temporary colostomy for 6 months. By December, I had lost 90 pounds and looked like a cancer patient near the end of their life. I was told during my hospitalization that not being on the meds nearly killed me and was never going to be an option for me. I know doing meds suck, but I truly think it is better than the alternative. Good luck
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