Hi All, I've actually had Crohn's since I was 25 and I'm 37 now. I was officially diagnosed with it back in 2009 after I had a bowel obstruction. When I was 25 (back when I was undiagnosed) I had a fistula that started at the end of my anus muscle and exited around the tailbone area. I had an advanced flap surgery to repair it and it took 1 year to actually close. Anyhow, fast forward to 2009 I was then officially diagnosed after a was sent to the Hospital with a blockage (worst pain ever). The blockage rectified itself at the hospital while the DR was doing his finger evaluation. I then had a colonoscopy and was officially diagnosed. After that they put me on Balsalazide and it gave me the worst headaches. I really only took it for a few months and then decided to stop because of nausea and headaches. Well, it's 2012 and I'm still not using medication. I'm trying to use preventative care in eating only healthy food and limiting sugar. Albeit I do have a couple drinks a night like beer, wine or vodka drink. I have been having ribbon stools and cramping i the morning when I wake up for years now and just treat it as the norm. I guess my question is, do you think I'm doing more harm than good by not being on meds? I just hate the side effects. Luckily ever since my hospital visit I haven't had an episode to bring me back to the hospital. Do you think I should just keep trying to eat healthy and be med free? Or would meds get rid of my cramping and ribbon stools? I know the real answer is to just go to my DR but I think the medical establishment is not great about preventative care and will just tell me to go back on meds and I feel that altering lifestyle can help dramatically even when they say it has nothing to do with it and you can eat whatever you want, you just have Crohn's and need to medicate. Thoughts? Thanks for your time and input, I really value this community.
Diagnosed in 2009 but not taking meds
- Thread starter Bluesun
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Blue, I was off meds for 7 years after my resection for obstruction. Meds were suggested, but I declined them, for the same reasons as you. You can find so much info on this site about eating, vitamin and mineral supplementation, etc,.As long as you don't have symptoms of a flare, I see nothing wrong with what you are doing.
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I don't take maintence drugs either but rather opt for drugs when in a flare. I wonder too if this is causing more harm than good but then I think about all of the horrible side effects and drug resistance and feel good about my decision...well until I'm in a flare again and I wonder if I were on maintence drugs if it could prevent the flare. I've been diagnosed now for 12 yrs (I'm 24) and so far haven't needed any surgeries for IBD. I believe we each have our own way of living with this disease and finding normal within it. If you have symptoms which you feel need medication and outweigh the risks of said medication, then by all means talk to your doctor. But if you're comfortable with your current "normal" I say keep doin what you're doing. Ultimately we all have to make a choice that's right for us. Certainly asking your doctor about it though can't hurt anything though.
David
Co-Founder
If we told you you were doing the right or wrong thing, we'd be guessing since we don't know the true state of your disease. If you were evaluated and there was no chronic inflammation leading to scarring and other issues and your intestinal mucosa is healthy and other markers of disease are normal, then what you're doing is fine. Chances are that's not the case, but it's possible.
My guess is that since you have stricturing, fistulizing disease (very serious) you're just counting the days until you're back in the hospital due to your lack of treatment plan. While it's possible for some people to control Crohn's Disease in a holistic manner, you have to be incredibly diligent and smart about it. I don't see any evidence you're doing that so I would strongly suggest you go in to see what the status of your disease is; give them that chance to be proactive.
If my words above come across harsh, please don't take them that way. I'm just very concerned about you
*hugs*
My guess is that since you have stricturing, fistulizing disease (very serious) you're just counting the days until you're back in the hospital due to your lack of treatment plan. While it's possible for some people to control Crohn's Disease in a holistic manner, you have to be incredibly diligent and smart about it. I don't see any evidence you're doing that so I would strongly suggest you go in to see what the status of your disease is; give them that chance to be proactive.
If my words above come across harsh, please don't take them that way. I'm just very concerned about you
*hugs*
I agree with David you need to establish how active your crohns is to decide if your doing the right thing. Ribbon poos are a sign of stricture which of course can cause an obstruction which obviously is very serious. I guess it's just a waiting game and getting checked every 6 months would be strongly advisable or sooner if you develop any other symptoms. Strictures can cause a lot of damage to the bowels and there is a strong chance of perforation due to the weakness caused by pressure inequalities in the tissue before the stricture. I think to go med free without having this delt with is a dangerous descision and you should be reviewed by a surgeon for options as maintenance meds may not be the answer either.
I also am med free since surgery got me into remission and like you have been very reluctant to take maintenance meds if not currently having active symptoms. I would however take them if that changes and I also get checked regularly for this. It's a personal decision and like everything else you just have to weigh up the pros and cons and decide if it's a risk worth taking.
I also am med free since surgery got me into remission and like you have been very reluctant to take maintenance meds if not currently having active symptoms. I would however take them if that changes and I also get checked regularly for this. It's a personal decision and like everything else you just have to weigh up the pros and cons and decide if it's a risk worth taking.
I am in the situation where I have not been taking maintenance meds for around six years. I was just taking 5 days of Pred when I started getting worse. I had diarrhoea but only once or twice a day and otherwise I felt fine. That was until last year I started flaring and Pred didn't work. My colonoscopy last month showed severe ulceration and a stricture. I am now on Azothioprine to try and sort things out which I am not enjoying! I do wonder whether had I stayed on Pentasa whether I would have avoided this situation.
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Yeah, the ribbon stools are a sign. Pay attention to it. If it weren't for the maintenance meds, I am absolutely certain that I would have had a serious blockage again. Instead, I am now going on 6 years without a partial obstruction and am in the best health I have had since diagnosis.
Excellent advice from all, thank you. I guess the only way to tell is to get another colonoscopy, haven't had one since the obstruction in 2009. Part of me is just scared because it's a horrible experience, I can hardly stand drinking that nasty gel water crap and then having my poor inflamed guts blown up like a balloon. Last time I had it they gave me that amnesia meds where you have no memory of the treatment. My last DR said he had to stop the procedure early because I was screaming in pain. so weird not remembering this, but I'm sure it's dramatic on our digestive system as well. But I also know there isn't another way for them to look.
I'm having a hard time cutting out booze and caffeine. I've cut out sugar from my diet and replaced with only honey. I'm weighing whether to try and be perfect and not consume both for 6 months and try to eat as healthy as possible including juicing and see if that helps. I do that all currently but I'm not regimented and cheat some times. I'm thinking taking out the alcohol and the caffeine alone might make the biggest difference. What I'm doing here is trying to balance when to involve the current medical establishment (who believe diet doesn't matter to Crohn's which intuitively I think is BS) vs getting some balls and staying strict to my diet I'm striving for.
Has anyone on this forum tried the very strict diet approach and found it help them stay in remission? Thank you all for the responses, all of us have our own custom disease with different total symptoms, I'm just trying to navigate my own rd to recovery.
I'm having a hard time cutting out booze and caffeine. I've cut out sugar from my diet and replaced with only honey. I'm weighing whether to try and be perfect and not consume both for 6 months and try to eat as healthy as possible including juicing and see if that helps. I do that all currently but I'm not regimented and cheat some times. I'm thinking taking out the alcohol and the caffeine alone might make the biggest difference. What I'm doing here is trying to balance when to involve the current medical establishment (who believe diet doesn't matter to Crohn's which intuitively I think is BS) vs getting some balls and staying strict to my diet I'm striving for.
Has anyone on this forum tried the very strict diet approach and found it help them stay in remission? Thank you all for the responses, all of us have our own custom disease with different total symptoms, I'm just trying to navigate my own rd to recovery.
also, does anyone out there have ribbon poos even when in remission? I heard very clear what you all said about the ribbon stools being a bad sign of a stricture and this is making me toggle to trigger for a coloscopy. I've had the ribbon stools as long as I can remember, but I poo every morning and just wondering if others have that while in remission as well. I had a blockage last time because I wasn't as aware of my diet vs my condition and I had a really tough Buffalo steak and a good amount of hard cheese. Since the blockage in 2009 I've been very aware of what I eat and no longer eat things that are very tough or feel like they could be hard to digest. And since then I haven't had a partial blockage which I used to get every few months before I controlled my diet better pre 2009. Then I would get severe bloating and intense stabbing pains that would last for 12 hours. But since the blockage I've had zero of those attacks, just narrow stools.
David
Co-Founder
I'd discuss what sort of evaluation techniques should be used with the doctor. A colonoscopy will only, at best, see into part of the terminal ileum as well as the large intestine. That's highly beneficial of course, but there can be active disease further up.
You can have narrowing causing ribbon stools and be in remission if the narrowing is due to scar tissue and not any active inflammation.
You can have narrowing causing ribbon stools and be in remission if the narrowing is due to scar tissue and not any active inflammation.
yes, following a strict diet can help you reduce some symptoms. Alcohol can cause inflammation and is so not worth the aggravation it gives me; even if only a glass of wine. Caffeine here and there does not seem to affect me. However, if we focus on only good foods/drinks in, there is a better result. For instance, be off some foods/drink for a while, then have it. You will generally see a change. If I haven't had sugar in a while and then have some m n' ms or other sugar tend to get constipated. Sugar will tend to lend to constipation (or D for some). Alcohol or breads will lead to bloated uncomfortable stomach that only relaxes when I sleep on my stomach and do not move. It is amazing what kind of sensitivity you get, when you get in physical shape and are eating the right foods/drinks. You can almost tell right away when you eat something that will negatively impact your health. Keep plugging along... you will find the right path for you; albeit a frustrating one!
KWalker
Moderator
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Bluesun, I'm in the exact same position as you are. I've been off all meds since 2010 due to personal reasons and my other symptom is the diarrhea and I can live with that. I was diagnosed when I was 2 (I'm now 22) so the diarrhea has become a normal thing for me. I look at it too like if I do have to go to the hospital, than I have to do what I have to do,but there are also a lot of people on here in much worse condition and ending up in the hospital even while on medicine, so knowing that there must be more to it than taking a harmful chemical drug to band aid your symptoms. That does nothing if you're still shovelling processed foods down your throat at dinner time.
I recently had a colonoscopy where my doctor said my crohns was active. He gave me a prescription for Imuran. Do you wanna know where that prescription is? At the local landfill. Some people think I'm stupid for my decisions but at the end of the day you're the only person to make the call and if the symptoms are that minimal I'd rather risk it than harming my body with other meds.
Best of luck, and pm if you feel like it. Oh, and I "manage" my crohns on diet as well. Nothing strict at all, but when its either processed or fresh/local I always go for the fresh. I would like to find some sort of supplement or multivitamin but for now its just diet.
I recently had a colonoscopy where my doctor said my crohns was active. He gave me a prescription for Imuran. Do you wanna know where that prescription is? At the local landfill. Some people think I'm stupid for my decisions but at the end of the day you're the only person to make the call and if the symptoms are that minimal I'd rather risk it than harming my body with other meds.
Best of luck, and pm if you feel like it. Oh, and I "manage" my crohns on diet as well. Nothing strict at all, but when its either processed or fresh/local I always go for the fresh. I would like to find some sort of supplement or multivitamin but for now its just diet.
