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Terrified of going med-free

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Posted 9/21/2015 3:38 PM (GMT 0)
Since discovering that I'm mesalamine intolerant (and allergic to sulfa), my doctor has begun pushing hard for not taking any maintenance medication. He's concerned about placing me on Imuran because I'm already at increased cancer risk thanks to an unrelated genetic disease, and thinks that my UC isn't severe enough to warrant biologics.

I still have symptoms: frequency (5-8 times daily), urgency, discomfort after eating, sometimes mucus. No more bleeding though. I'm better and this is significantly more livable that what I was dealing with every day on Colazol and Canasa, but I'm very concerned that not taking anything is going to land me right back in a flare.

My doctor is no slouch. He works in an IBD practice in one of the top 10 hospitals for gastroenterology in the US, and is leaving to head his own unit at Northwestern. I'm certainly not excited about the prospect of another drug with even more side effects after the nightmare I dealt with on mesalamines, but I don't know what else do to.

Currently taking supplements: NAC, zinc, a multi, and curcumin/tumeric, plus hydrocortisone suppositories. I can't tolerate probiotics. Grateful for any suggestions.
Posted 9/21/2015 3:50 PM (GMT 0)
This is the first time I've heard of a doctor recommending no maintenance meds for someone who has UC...

I mean, you could certainly see how it goes without using meds but the obvious (and seemingly inevitable) danger is the inflammation damages your colon, you flare up, and wind up at the hospital, trying to fight your way into remission while being pumped full of steroids. Unfortunately, that's how the story typically goes with UC. Even if you can hang on to your current state for a long period of time, so continuing to experience discomfort after eating and have 5-8 urgent bowel movements a day, I don't think that is a very good QOL. No offense.

I think your concern of going med free is legitimate. I would probably try one of the biologics if I was in your position. Also no harm in getting a second opinion, no matter how big a deal your current GI may be.
Posted 9/21/2015 3:52 PM (GMT 0)
What do you mean you can't tolerate probiotics? Which ones have you tried? Some probiotics made me worse and some made me much better. It may be that you just haven't found the right ones yet. In a way the statement that you can't tolerate probiotcs cannot be totally factually true because you ingest probiotics every day via foods and drinks so unless you can't tolerate any food or drink then there must be some that you actually can tolerate. I would get a stool sample done from Ubiome and see what the results are. It may wind up being a total waste of $89 but then again it might point you into a direction that you currently can't understand.
Posted 9/21/2015 4:11 PM (GMT 0)
Sounds like a bad idea. I would try simponi or remicade if I was in your situation. Having uncontrolled inflammation is always bad and I do not agree with your doctor at all.
Posted 9/21/2015 4:49 PM (GMT 0)
Uncontrolled uc inflammation can mean increased odds of colorectal cancer over the long run. Over the short yerm you unnecessary suffer from uc symptoms. I'd go on biologics and/or seek a second opinion.
Posted 9/21/2015 4:52 PM (GMT 0)
Is it possible that you think you are mesalamine intolerant but really you are not. you are unable to tolerate "sulfa" and most mesalamines contain sulfites. there is sulfite free rowasa which may work for you. and biologics are much safer than unchecked inflammation.
being that you are not flaring now entyvio may be a good option as its best for maintaining a remission instead of inducing it.
good luck
Posted 9/21/2015 5:39 PM (GMT 0)
5-8x a day is the same as you could be with a j-pouch and that is med free, and UC free. I never liked going more than 1x a day. I always considered myself in a flare up if I were going more than "normal". Normal for me was 1-2x, some people go 3x but more than that seems to indicate something going on. I think I would be aiming for going a "normal" amount without urgency. 5-8x is too much for a person with a colon and 5-8 can quickly go to 10 or 15x. You could give it a try and see how you do. If you stay at 5-8 with urgency, and you find that acceptable, no one can tell you that it's not, but i couldn't live that way forever. I was going less than that with a very limited diet (diet of next to nothing, but yup, i could have lived like that and gone 5-8x with urgency). No thank you, not how i want to spend the next 50 years. You could try to use steroid enemas for a few weeks to get things to a place of normalcy and then see how you do if you use those 2x a week for a while. Maybe that would keep you at a better place. 5-8x urgent sounds pretty awful to me right now. Actually any # + urgency sounds awful
Posted 9/21/2015 5:58 PM (GMT 0)
1. I agree that trying sulfa-free Rowasa is a "must try" for you. Your GI may have to fight for you with insurance company but it is worth trying. Will you stay with your current GI (he is leaving for another practice?) or get a new GI?

2. Start taking 95% curcumin orally. Do a search for it and see that there is medical proof that it is nearly as effective as mesalamine for those in remission. Yes I understand you are not in remission but it is a safe supplement taken in large doses and could possible help you.

I am not mesalamine-intolerant but oral RX meds have never done much to help me except for rectal enemas and suppositories. Diet modification got me to remission but probiotics like VSL#3 (no RX needed) was a big help and I continue taking a daily probiotic. Start trying different types out to find the kind your gut tolerates.

If I were you I'd also schedule a consult with a colon surgeon just to hear what your options are. It is not a terrible choice and it's better to have this talk while you have choices and not when you are in the ER.

Also get a second opinion on your UC med options from another doctor but trust your own heart. No one wants you to get cancer from either meds or untreated UC. And you deserve to live a life without fear of urgency and runs to the toilet.

Best wishes.
Posted 9/21/2015 6:09 PM (GMT 0)
I am a little conflicted on this, but ultimately I have to agree with your doctor, and it is very rare for me to agree with the current medical establishment.

Iamcurious recently posted a study showing those who have taken meds have a harder time obtaining med-free remissions than those who have not:

Finally, once you are on meds the harder it is to experience a med-free remission. The National Cooperative Crohn's Disease Study (NCCDS) as well as the European Cooperative Crohn's Disease Study (ECCDS) have both demonstrated that patients with no prior drug therapy have a greater likelihood of remaining in remission without maintenance drugs:

”Of the patients whose disease responded to the placebo (20 of 77; 26%), the majority (70%) remained in remission at one year, and a fair number (45%) remained in remission at two years. These results indicate that many patients undergo spontaneous remission, approximately 20% at one year and 12% at two years.

“However, when another factor is considered the success of placebo therapy rises dramatically. Of patients in the placebo group who had no previous history of steroid therapy, 41% achieved remission after 17 weeks. In addition, 23% of this group continued in remission after two years, compared with only 4% of the group with a history of steroid use.”

If we are playing the numbers game, you seem to be at an advantage merely because you have not been on medications for a prolonged period of time. Perhaps it is the immunocompromising nature of the medications that lead to worse outcomes and change the microbiotica.

That being said, you owe it to yourself to research all possible treatment modalities. Many here have indeed obtained med free remissions, but the problem is that they do not post here, so you will not get both sides of the story.

There is an increasing body of evidence suggesting that the disease is microbial in nature, and that the good bugs have overtaken the bad. People have also cured themselves through fecal transplants and it is a surging treatment for those with bacterial infections like c. diff.

I encourage you to research things like kefir, resistant starches, probiotics, curcumin, fish oil, essential oils, butyrate, hygiene hypothesis, fecal transplants, missing microbes, whey protein, LDN, l-glutamine, Jordan Rubin, Maker's diet, Paleo diet, Jini Patel Thompson.

Best.
Posted 9/21/2015 6:39 PM (GMT 0)
Since discovering that I'm mesalamine intolerant (and allergic to sulfa), my doctor has begun pushing hard for not taking any maintenance medication. He's concerned about placing me on Imuran because I'm already at increased cancer risk thanks to an unrelated genetic disease, and thinks that my UC isn't severe enough to warrant biologics.

Kudos for your doctor. I was in your same position over 5 years ago. Mesalamines were the preferred way to go but I was allergic to them. Unlike your doctor my GI was pushing me to escalate up the med ladder to the “big guns”. Instead I chose to see if diet and supplements would work, and I am glad I did.

I agree with Gary about finding a probiotic that is compatible for you. Some people on the Crohn's forum rave about Align but that probiotic makes me sick. You need to find something that works for you, Take a peek at our signatures to see what is available. As with all supplements, start out slowly. Some of have found that soluble fiber such as psyllium or Citrucel helps.

I see that you tried the SCD and FODMAP diets. I am a firm believer in diet modification but those diets didn't help me at all. I needed a food diary to discover that cruciferous vegetables, seaweed, shellfish, etc. are triggers for my symptoms, but these foods are perfectly legal under the SCD. Non-gluten grains are OK for me but are verboten under the SCD. Potatoes are also forbidden but they are an important source of resistant starch.

Beans, watermelon, and chocolate are not allowed under FODMAP but I can eat them OK. So you see everyone is different. You need to find what works for you individually.

Mesalamine intolerance really isn't so bad as long as you recognize what foods are compatible for you. Probiotics are my maintenance drug with powdered psyllium seed (yeech!) taken as needed. Curcumin works for me and others. If your doctor is half as competent as you say he is then I am sure he has measured your blood levels of vitamin D. If not then you better demand it.
Posted 9/21/2015 7:26 PM (GMT 0)

garylouisville said...
What do you mean you can't tolerate probiotics? Which ones have you tried? Some probiotics made me worse and some made me much better. It may be that you just haven't found the right ones yet. In a way the statement that you can't tolerate probiotcs cannot be totally factually true because you ingest probiotics every day via foods and drinks so unless you can't tolerate any food or drink then there must be some that you actually can tolerate. I would get a stool sample done from Ubiome and see what the results are. It may wind up being a total waste of $89 but then again it might point you into a direction that you currently can't understand.

I've tried about at least a dozen different types. It consistently makes my symptoms worse instead of better. I just got tired of trying new ones only to end up bedridden for a week or two.

As for Ubiome, I did Genova Diagnostics comprehensive GI profile, which accomplishes the same thing.
Posted 9/21/2015 7:33 PM (GMT 0)

Dikid said...
Is it possible that you think you are mesalamine intolerant but really you are not. you are unable to tolerate "sulfa" and most mesalamines contain sulfites. there is sulfite free rowasa which may work for you. and biologics are much safer than unchecked inflammation.
being that you are not flaring now entyvio may be a good option as its best for maintaining a remission instead of inducing it.
good luck

I'm actually allergic to sulfa drugs (hives, etc...). I'm intolerant to mesalamine, meaning that I believed I was flaring for years (blood, mucus, bloating, running to the bathroom 20+ times a day with urgency) but had very little evidence of inflammation during colonoscopies. My doctor described it as "mild proctitis." I tried Asacol, Apriso, Lialda, and Colazol. Eventually, we realized the drugs were causing the symptoms. Having been off of them for two months, as I said, I'm significantly better, though by no means normal.

I'm trying to push for Entyvio. This is now my fourth gastroenterologist and I'm tired of fighting them. Three years of them looking at colonoscopy results and insisting I'm not as sick as I say I am only to discover that my medication made me sicker. I just don't agree that no medication is the solution.
Posted 9/21/2015 7:36 PM (GMT 0)
I'm a hard sell on going medication free, especially when the answer is so vague: do a lot of research on your own (find studies saying x and y are effective supplements) and keep a food diary as diets, such as SCD and FODMAP, aren't completely accurate for every individual. It seems it would be easy to get lost in the forest of plausible things that might help (many have studies backing them in the resources section). What are the general guidelines, where does one start their journey with? A certain diet, certain base supplements... How long does one try a given supplement or diet before abandoning it due to non response? How long does this whole process take (finding one's medication free treatment)... 6 months, a year, or more?
Posted 9/21/2015 10:50 PM (GMT 0)
Is this the same doctor let you have those terrible symptoms for so long and who never considered that you might be intolerant to mesalamines?

I've learned from experience that doctors who have excellent credentials, fancy titles, etc may not be very good at taking care of patients. I found that type of doctor to be convinced s/he is always right, doesn't like being challenged, is unimaginative in treatment ideas, and is not focused on the patient. Of course, not every renowned the doctor is like this but I think that many are. They believe their own publicity.

I vote for a second opinion and that you seriously consider getting a new doctor.

FYi- Northwestern is not all it's cracked up to be. I used to see all my doctors there and I've switched because I find them to be overbooked and too busy to take good care of patients. It's funny, I was thinking about this before I had a colonoscopy today, not at Northwestern. The nurses are unrushed, everything ran exactly on time, and I was able to get an appointment within a month of calling for one.

Anyway, My advice is find a G.I. that you like, who listens to you, and is willing to work with you. Famous and well-renowned is only important if you're seeking surgery or you have a rare disease that few doctors understand.

It so happens that I'm allergic to Mesalamines and the only thing I take for maintenance is curcumin. But that was my decision and I was comfortable with it because my colitis has been mild. I think you're right to question the idea of no meds and, since you're willing to try Entyvio, I don't see why a doctor wouldn't allow it.

I don't take any medications because I decided that I would rather have my colon removed then go on any biologicals. But that's me. And I wish that I could take mesalamines because my last colonoscopy showed probable dysplasia and my doctor and I have wondered if that could have been avoided.

I guess my point is that even if yoUr UC is mild and rarely causes symptoms, you may still be in danger of developing cancer. Taking meds is one of the best ways to improve your chances of not getting cancer. I just can't believe your doctor isn't considering that.
Posted 9/21/2015 11:07 PM (GMT 0)
even if your UC is mild and rarely causes symptoms, you may still be in danger of developing cancer. Taking meds is one of the best ways to improve your chances of not getting cancer.
I just can't believe your doctor isn't considering that.

But her doctor is considering that. Everyone knows that taking mesalamines helps to prevent cancer. The problem is that she is allergic to mesalamines just as we are. She cannot take the milder meds and her doctor has determined that stronger meds would only aggravate her already increased risk of cancer because of her unrelated genetic disease.

But it never hurts to get a 2nd opinion.
Posted 9/22/2015 12:20 AM (GMT 0)
I was in your situation, until I found this forum, and this study http://www.ncbi.nlm.nih.gov/pubmed/10022641.
Psyllium seed powder + kefir is the only thing that has worked for me so far. You can try searching the forum and see if it's worth a try...
Posted 9/22/2015 12:23 AM (GMT 0)
Just as an FYI, mutaflor (e coli nissle 1917) has shown to be just as effective as mesalamines in inducing and maintaining remission in UC patients:

RF The probiotic E. coli Nissle was compared to mesalamine in several large head-to-head trials, and both treatments were found to be equally effective. VSL#3 has not been directly compared to mesalamine, but studies of VSL#3 achieved rates for induction of remission that were similar to those associated with mesalamine. Given these results, the data suggest that if patients are taking the right numbers of these probiotics in the right way, then the efficacy of both E. coli Nissle and VSL#3 is probably similar to that of mesalamine.

The only problem is that it is banned in America. If you lived in Europe or Canada, then you'd be able to purchase it and give it a shot.

Had my doctor told me this when I was diagnosed, I would have never opted for mesalamines given how much they cost. Plus, the added hair loss from taking them wasn't any fun. You genuinely have the right to know that there are more efficacious options out there than just mesalamines and biologics.

I wouldn't jump to biologics without trying all the available options, but it is of course your choice.

Good luck.
Posted 9/22/2015 12:30 AM (GMT 0)
If u are taking cortisone enemas than you are on meds, just not oral meds right?
Posted 9/22/2015 12:32 AM (GMT 0)
Why anyone would suggest a consult to a surgeon to you is beyond me! Lol
Posted 9/22/2015 12:55 AM (GMT 0)
Recommend you to look into fecal transplant.
If interested, search this forum or check into Power Of Poop website.




Best wishes
Posted 9/22/2015 1:03 AM (GMT 0)
You may have misunderstood me. I don't doubt that you cannot have mesalamines. I was saying that perhaps you are allergic to one ingredient in the mesalamine medications so it causes a reaction.
Posted 9/22/2015 9:35 AM (GMT 0)

IamCurious said...
But her doctor is considering that. Everyone knows that taking mesalamines helps to prevent cancer. The problem is that she is allergic to mesalamines just as we are. She cannot take the milder meds and her doctor has determined that stronger meds would only aggravate her already increased risk of cancer because of her unrelated genetic disease.

But it never hurts to get a 2nd opinion.

This post.

Dikid said...
You may have misunderstood me. I don't doubt that you cannot have mesalamines. I was saying that perhaps you are allergic to one ingredient in the mesalamine medications so it causes a reaction.

Yeah, she is allergic to one ingredient: the mesalazine. Sorry, I don't mean to be sarcastic but after I had a few bad reactions to various mesalazines, my doc muttered peevishly to himself that maybe I was allergic to the coating, or something. I can't remember if I literally rolled my eyes, but I certainly mentally did. I'm still angry with my original GI for fobbing me off with useless medication for so long.
Posted 9/22/2015 9:48 AM (GMT 0)
I would see another doctor(s) for other opinions. Your symptoms may not be horrible right now but if you are on zero medication, then chances are you will end up much worse down the road. This disease tends to progress and with nothing to hold it back, it could become out of control fast. Best of luck.
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