• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Medications keep failing. What now?

Hi, everyone. I've done a lot of research since being diagnosed and usually when I go to my GI appointments I know what the doctor will prescribe. However, I've tried almost all the drug TYPES I've read about and nothing has worked. Now my doctor seems stumped and so am I. I just wanted to see if anyone has any insight or experiences to share that might help. I was diagnosed last year august and I had an abscess and fistula. Metronidazole and Ciprofloxacin gave me horrible side effects so I used Ertapenem which got rid of the abscess and fistula. Since then I tried prednisone (horrible side effects of course), Imuran, Humira, and Remicade. With every one I've tried I had a flare within a month of starting it and the flares have gotten worse and now I have arthritis with the crohns. What could be next?
 
Hey Kmole,


Considering all the meds are not working, have you looked at any other ways of healing yourself?

I will gladly help out if you could list your diet.

Also, there are many aspects to health, how is your stress level? did you exercise before?

I actually made a post about a lot of the things I have done over the past year, you can ask me any questions on anything you like, here is the link http://www.crohnsforum.com/showthread.php?t=42981

Let's get you feeling better!
 
They always can try combinations of drugs. My last flare required Prednisone and Humira with Prilosec for the GERD that came with the pred. Plus, the meds that get you through a flare may not be the same as your maintenance meds. There are others in each class to try like Cimzia or Tysabri. As noted by a couple of folks above, exercise, diet, and stress reduction can greatly complement/enhance your chances to stay in remission with your drug regime.
 
To Myreinhard, I have read a bit about LDN and after taking all the medication I did, and having so many side effects that I felt were worse than the symptoms from Crohns, I'm a little weary of taking more medication even though that may be the path I have to take.

To Boris, I have looked into medical marijuana but after trying it a bit I don't think I could get used to it. I have also tried being a vegetarian for other reasons and my symptoms didnt decrease. My diet right now is pretty healthy but I know I could do better. I usually eat fruit and a piece of toast or maybe an egg in the morning and then I eat a lot of soup that my dad prepares with fresh vegetables. I never eat out, I don't eat a whole lot of meat because the only reason I stopped being a vegetarian was because when I felt nauseous the only thing I wanted to eat was meat. As for stress I dont have a job or go to school because of the health issues but the disease stresses me out and other life issues too so it can be high and low. I did exercise A LOT before, and I have tried exercising during the past year too but its been on and off because of arthritis and energy levels and stuff like that.

Thank you both for replying :)
 
There is one more biologic medication approved for Crohn's Disease It's called Cimzia. Maybe it will help you.
 
One of the worst things for the human body is to not be productive.

When the body is in that state, it is hard not to concentrate on the health issue. But, what's worse is that the more you concentrate on it, the more of it you experience.

Doesn't sound like your diet is bad, congrats on not eating out (you are part of like the 15% of people that go even that far)

To go further, have you ever gone a any specific diets?

If not, since meds are not working, I think this could be a good shot at trying something new.

I only like to go based of results and science, so if you are up for it, we can muster up a 30-day challenge!

The first thing I would put into place is to eliminate: grains, refined carbs, sugars (not all, sugar from fruits and veggies is allowed), dairy and get on 2 liters of water a day.

This would suck for about 7 days, due to withdrawals, but the benefits could be huge.

There is mixed data on the subject of grains, so I will let you explore that yourself, but what is a fact is that you would do 2 great things for your body:

1. The regime would consist of meals every 3-4 hours (this would help your intestines from having spasms

2. Your glucose levels would be balanced very nicely throughout the day. Meaning you won't have ups and downs = much greater energy levels

I would highly recommend putting meats back into the diet for complete protein sources. Also you will have no problem digesting them vs. the grains that are more complex for the intestines.

Lastly, the marijuana as you noticed is not really an effective solution. I highly recommend yoga (not only for improved intestinal health and bone structure) but because of it's mental effects.

That would also get you some exercise back into your routine = greater productivity

greater productivity = more focus on the things you want

more focus = better health


P.s. I would also recommend some calcium supplements for the time being and naturally fish oil + probiotics are a given :)
 
To mbishop That sounds like a LOT of meds lol hopefully I won't have to use this as an option.

To kh216 I heard about that biologic I'm just not convinced it will work seeing as both Humira and Remicade didn't work at all.

To Boris I agree I should try and fit some exercise in. I have tried a gluten free diet before which didnt make me feel too different but it may be worth another try because I wasn't diagnosed then. As for the meat I'm not sure what to choose because I know the way animals are raised could make the meat not good for you in some ways but on the other hand I understand that it is an important protein source.

Thanks for all the feedback ) .
 

FullM3lt

Activate CB2
Location
Pacific NW
Lastly, the marijuana as you noticed is not really an effective solution.
It's definitely not for everyone, but I disagree with your statement. Plenty of scientific and anecdotal evidence out there. I've experienced its healing power first hand....and I was on every other drug out there before I even tried it.

It takes time to build up in your system, just like most medications (example: LDN)

Cannabinoid 1 (CB1) receptors coupled to cholinergic motorneurones inhibit neurogenic circular muscle contractility in the human colon.

Neural contractions in colonic strips from patients with diverticular disease: role of endocannabinoids and substance P.

Endocannabinoid overactivity and intestinal inflammation

Cannabinoids promote survival of normal human colonic epithelial cells

Science: Cannabinoids reduce inflammation of the bowel in animal model

ACG: Cannabinoid Activator Mellows Out Colon

Increased endocannabinoid levels reduce the development of precancerous lesions in the mouse colon.

Cannabinoid CB2 receptors in the gastrointestinal tract: a regulatory system in states of inflammation

The role of the endocannabinoid system in the pathophysiology and treatment of irritable bowel syndrome.

Cannabinoids in intestinal inflammation and cancer.

Cannabidiol Reduces Intestinal Inflammation through the Control of Neuroimmune Axis

Cannabinoids mediate opposing effects on inflammation-induced intestinal permeability.

I have dozens of these links to legitimate scientific studies....

 
I believe it may help I just can't get past the high. I don't like the feeling lol. Do you know of any way to get the benefits of it without the high and preferably naturally prepared ways? Also, what "dosage" would you take and for how long do you think before it starts working? Thanks for all the information! :)
 
Hi Kmole- I agree with combination. My gi said that with humira, you can still take 6mp or imuran. My crohns improved a bit with humira, so I don't take 6mp as well, only because I wasn't in full remission anyway, so I think humira is good enough to at least slow D.
What do you mean by- nothing works? As in, nothing puts you in remission? Most people on this forum, have crohns symptoms regularly, and don't go into remission. So if a med helps your symptoms, that's great. You've had crohns for just over a year, and you've already tried humira and remicade- yet these can take 3-6 months to really begin to improve your symptoms. So of after a month you stopped humira (you wrote you flare a month after beginning any meds), well at that stage your only on loading doses, so I'm surprised your gi didn't ask you to wait longer. Imuran, my gi told me, you have to at least take for 6months, before you see a lot of improvement in symptoms. And sorry to tell you this, but on any med, you can still have flares. It dosnt mean the med isn't helping. Maybe try something for a few months at least, and keep a symptoms diary of how it improves your D etc, vs no meds at all. Hope that helps- otherwise try 6mp if you havnt. But give it at least 6 months. :)
 
See that's what always confuses me, how do you know a medication is working if you can still get flares with it?
 
Prednisone helps my Crohns but ruins my face with horrible acne and makes me nauseous (side effects to me are worse than my Crohns). Imuran I took for a while by itself but it never helped symptoms or crp. For humira I was on it for 6 months 9Feb to July) and then what was mildly high crp turned into a huge flare. I started Remicade 4 months ago and I was taking it with Imuran but for 2 months I was on prednisone again. The prednisone helped but after getting off of it I started having a flare again.
 
Hey David isn't Rick Simpson oil something you take when you sleep if you don't like the high. Does it help with Crohns? I know it helps with Cancer. Being that there are canniboids in the GI tract I would think it could be helpful.

Kmole I believe LDN has less side effects than other meds. Kev is the guru in LDN.
 
My apologies, I didn't make my statement clear enough.

What I wanted to say with that statement is that marijuana might not be the best long-term solution to help aid OP's problem.

Helping with excrutiating pain is obviously a personal choice and I respect that.

Also, there are many things a person can do that have the same effect. (tai chi, meditation etc. etc.)

Health is much more than physiology, there are many factors to it and one of the most important ones is psychology.
 
To Boris I agree I should try and fit some exercise in. I have tried a gluten free diet before which didnt make me feel too different but it may be worth another try because I wasn't diagnosed then. As for the meat I'm not sure what to choose because I know the way animals are raised could make the meat not good for you in some ways but on the other hand I understand that it is an important protein source.

Thanks for all the feedback ) .
If the diet didn't work, why would you try it again?

There has been so much marketing around gluten that it's becoming a joke.

The first thing I ask people is if they got tested for gluten allergies? they usually don't even consider that option.

Also, gluten free diets could help because they eliminate a ton of junk people usually eat. (their health benefits might not have anything to do with gluten)

On top of that, only in north america food is pumped full of gluten. (6-7 more times then normal) - Italians eat the most gluten in the world, yet they don't have the problems we do

Agreed on the meat, which is why I recommend organic if you have the budget, other wise you are guaranteed hormones, corn fed meat that doesn't see sunlight ever, which is filled with antibiotics because they are sick.
 

Kev

Senior Member
I don't consider myself a guru.... more of a bore-you. I firmly believe LDN is a valid option worth looking at. The problem is finding a doctor to prescribe it (without risking existing relationship with current doctors). Once you have a prescription, then the challenge is to find a pharmacy that knows how to compound it properly. Get over these hurdles, then the next one is the biggest... taking it properly, waiting to see if it kicks in/works for you. That can be a real test of nerves. I did it while coming off pred, and without any other meds to tide me over. I had a pretty bad go during those initial days... whether due to pred withdrawal OR because a person typically may feel worse before they begin to feel better.... I dunno. If it does work (LDN) then the rest is easy.
I say that because the known side effects on such a low dose of LDN are pretty tame compared to other IBD meds. I've been taking 4.5mg of it daily (actually nitely) for over 5 years now... only side effect I ever experienced was wonderful dreams. Yeah, I know, we all have our crosses to bear. Poor me. Vexed with those vivid dreams. It was like taking a vacation whenever one occurred. Man, I really MISS that LDN side effect.

Look, I did the pred rollercoaster. Pred worked wonders for my disease while I was on it. Problem is... with the nasty side effects, no doctor will let you stay on it. They'll taper you off it, "too see what happens". Every time I tapered off, my disease came flaring right back.... worse than ever... then I'd go back on pred... but I need a higher dose to get the same results. Played the pred roller coaster game for almost a full year. Then they sent me for bone density tests.... because one of the sides of pred is brittle bone disease. Anyway, I digress. There are all kinds of med options for treating Crohns, LDN I believe is a valid contender. And this is coming from a lab rat with 5+ years experience.
 
To Boris When I tried the gluten free diet I was having lots of constipation, I dont think I had active crohns then, and the naturopath did a food panel that showed I was sensitive to gluten. I have had a test for celiac and it came back negative. It may not have anything to do with the crohns but if all else fails I might try it again. Yeah I've looked into humanely raised grass fed meat but it's very expensive.

To Kev, vivid dreams would be an awesome side effect lol. I think I'm going to try natural methods for a while because my system is so messed up right now from medication side effects, but if that fails I will surely ask about LDN and research it more as well.

I read this yesterday http://www.crohnsforum.com/showthread.php?t=41838 about juicing and I think I might research and try this.
 
Hi, everyone. I've done a lot of research since being diagnosed and usually when I go to my GI appointments I know what the doctor will prescribe. However, I've tried almost all the drug TYPES I've read about and nothing has worked. Now my doctor seems stumped and so am I. I just wanted to see if anyone has any insight or experiences to share that might help. I was diagnosed last year august and I had an abscess and fistula. Metronidazole and Ciprofloxacin gave me horrible side effects so I used Ertapenem which got rid of the abscess and fistula. Since then I tried prednisone (horrible side effects of course), Imuran, Humira, and Remicade. With every one I've tried I had a flare within a month of starting it and the flares have gotten worse and now I have arthritis with the crohns. What could be next?
I have just recently been on meropenem which is an IV antibiotic. It's only IV though so you either have to stay in the hospital or get homecare 3 times a day. I'm currently in the hospital and been taking it for 11 days, I'm hoping to go home monday with homecare for it. So far it seems to be helping a wee bit.
Also, have you been approached with the possibility of a seton (not medicine). It like a soft plastic material that gets put into a backed-up fistula or abscess so that it doesn't heal too fast and cause another build up of puss.
I'm kinda in the same boat with the meds, antibiotics and my body do not mix but I seem to be taking to the meropenem...

Good luck and hugs to you.
 
When I was on ertapenem I was in the same boat as you. Thankfully there is an outpatient center near my house and I got at home care after a few weeks. I was told the IV medications help without as many side effects because they bypass your digestive system so they don't give you heart burn or nausea as much. Even though I had to go get the medicine everyday I thought it was so worth it because I too felt better on the IV antibiotics. My fistula and abscess went away after two months on the IV antibiotics so I haven't had to deal with that again but I hope yours does well and you get to go home soon. :)
 
I'm sorry to hear you are having problems. It's all a matter of finding what works for you. Some meds work for some and not others. I'm currently taking. Colozal 400 MG 9 a day and Cimzia. Seems to be working. I'm also taking a mild medication for anxiety. It seems to help when I start to get stressed out. As far as diet I can't eat spicy or Grady foods. I try to eat allot of protein and fruits and veggies when I can.no gasy ones like broccoli. They not work for me. Also dairy is bad. I have allot more problems when I do any dairy. Good luck you will find what works. It just takes some time.
 
Top