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Posted 4/17/2019 5:26 PM (GMT 0)

garyi said...
One basic question. Once on a biologic, is it usually for life?

The current clinical recommendation is to start and stay on a biologic for as long as it works for you. Why? Our immune system can develop antibodies to biologics, making them ineffective. Antibodies are often developed after discontinuation of said biologic. So a start/stop/start process is generally not recommended. Some have tried it, and results vary. So, the recommendation is to initially achieve a remission with and continue a biologic as a maintenance treatment. Often in a remission, you remain on only the biologic, so there's no daily pills or enemas to take which is nice.

And with the patient-copay/delectable assistance cards, the biologics can cost less than the pills do, anyways.
Posted 4/17/2019 5:34 PM (GMT 0)

CCinPA said...
I went with Entyvio which worked really well, but sadly my body stopped responding . Then I went with Humira, but I built up antibodies and it didn't work for me. I am now on Remicade and have added 6MP to hopefully prevent antibodies.

Something to note, Xeljanz isn't, itself a monoclonal antibody, so your body cannot produce antibodies against it. Xeljanz is a tiny molecule that works inside of cells. Biologics are large, cell-surface working molecules.
Posted 4/17/2019 7:07 PM (GMT 0)

MariaMaria said...
Poopydoop sounds like your diet is more inline with IBD-AID which is an updated SCD protocol. It allows oats, sweet potatoes, variety of beans, plenty of dairy (hard cheeses mostly), etc. I switched to this diet and was so relieved to be able to expand my eating options with no recurrence of symptoms. SCD is incredibly rigid, cutting out entire food groups as a precaution. When it does work for someone, hard to say what the true culprit was. I agree with iPoop, "SCD-light" is a worthy goal - if SCD does work for you the next step can be manipulating it to see what you can and cannot tolerate without starving yourself and losing enjoyment for life.

https://www.umassmed.edu/nutrition/ibd/foods-list-for-ibd-diet/

Hi MariaMaria that's interesting to know. I never investigated the ibd-aid diet, I got disillusioned by (failed) attempts at scd and veganism, so I've just been doing trial and error to figure out which foods aggravate my symptoms and which ones don't. Drugs have been the most effective means for me in reducing inflammation but I still try to eat healthy, and avoid things which clearly make me feel worse.

If there would be a definitive recipe for healing myself with diet I would have followed it. Often when I have talked with others taking immunosuppressants they also said they tried different diets without success. I think it's easy for people who had success with diet to assume everyone else can too, but I also think that it's such an individualised problem that we cannot apply blanket diet rules to everyone.

I very rarely eat junk food and i have been gluten and dairy free for the most part of 4 years. Dairy gives me diarrhoea very obviously, even lactose free options. I think it has to do with the fat rather than the lactose. I don't even know if I need to avoid gluten any more, now that my bowel is quieter, and am considering re-introducing it in small quantities.
Posted 4/17/2019 7:28 PM (GMT 0)

poopydoop said...
There's a big spectrum between doing non-SCD and eating junk food. I eat much healthier since i allowed myself foods that are scd-illegal e.g. rice, potatoes, sweet potatoes, chickpeas, mung beans, oats, tofu are all nutritious and do not change my colitis symptoms, yet scd illegal. For me scd was a starvation diet since I was intolerant to so many of the "legal" foods. Apart from that life is just much easier and more emjoyable when you don't have to follow a highly restrictive diet. Imagine how much less you have to worry when you can eat what you want.
While there is plenty of anecdotal evidence that scd works for some people there is no evidence that it works for everyone. Many who go on biologics (myself included) tried scd and it didn't work.

Well of course it doesn't work for everyone, that statement applies to every treatment option out there.

Which SCD legal foods were you intolerant to?

iPoop said...
It takes a lot more meds to initially achieve a remission, but less meds to sustain that remission. So I entered a remission on remciade, 6mp, lailda, and nightly rowasa enema. After multiple months of a sustained remission, under docs orders I started weaning meds. And this is a general process most patients would follow, cut back to only what you truly need to sustain a remission.

I got down to just remicade, after eliminating everything else, slowly and carefully over 2.5 years under doc direction. I flared lightly, and just added what I cutout back into my daily treatment (that is added back 6mp, lialda and rowasa) upon doc assessment/recommendation. Upon sustained remission again, cut back again but not nearly as deeply this time, which seems to be a recipe that works.

Mesalamines like lialda/rowasa are still effective tools for treating mild inflammation, even when we're on strong meds like remicade. You can add them back for mild flares, and they can pull you back.

Regarding diets, remicade does not guarantee you can eat recklessly, with abandon. Generally you can eat a wider spectrum of foods while in a remission, but sensitivities/intolerances still occur for some of us. For many, a big part of the reason the diets like SCD work are they cut out gluten, dairy, which a percentage of us have food intolerance to. Remicade does not eliminate food intolerance, i.e., a gluten-intolerance still exists with remi. I generally try and eat healthily, but do have the occasional guilty indulgence of greasy burgers and fries. So, you might want to follow a SCD-light diet, a bit looser with the occasional indulgences. I wouldn't want to completely jump-ship on something that you've had some luck with, for sure. At least not abruptly. Maybe more loosely as years pass in a sustained remission, you could get a bit braver and bolder and see if your gut is still happy with it.

I listened to a recent podcast with a GI doc who specializes in IBD and he said they never typically have an intention to get patients off the biologic, they keep them on it. But I suppose tapering off the others makes sense.

I've often wondered if mesalamine even does anything for me anymore. Back in 2016 when I first did SCD I came off of it and didn't notice any difference. In the past Rowasa (2011) put me in complete remission but now seems to only mildly benefit me. So I've wondered if it was even worth taking anymore to be honest. I went back on it in 2016 when people on this forum told me it was dumb to stop taking it lol.

Regarding your last paragraph, yea, I've been into lifting and fitness since I was a kid, I've always eaten much healthier than average. What I miss most is the social aspect. Yea I don't love eating SCD but 90-95% of the time it's fine. Just sucks when I can't indulge with friends/family at outings and events so being able to would be nice.
Posted 4/17/2019 8:00 PM (GMT 0)

CCinPA said...
I don't think anyone has mentioned this (or I may have missed it) -- I think that usually Crohn's patients who have surgery get a permanent ostomy (meaning you wear an external bag) since the possibility of getting a return of the symptoms with a J-Pouch is very high. Your signature says that your diagnosis is indeterminate so Crohn's is a real possibility. If you are leaning towards surgery you may want to do some consults with surgeons to see what they have to say, but be prepared that you may not be able to get a J pouch.

I was very hesitant to go on a biologic because I was scared of the side effects. But after a couple years of trying alternatives I went with Entyvio which worked really well, but sadly my body stopped responding . Then I went with Humira, but I built up antibodies and it didn't work for me. I am now on Remicade and have added 6MP to hopefully prevent antibodies. I get my 3rd loading dose next week and am completely symptom free at this time.

If I ever need surgery I will learn to adapt, but I am going to do everything I can to keep my colon. I've read enough from those who have had surgery to know that it's a grueling process to go through 2-3 surgeries and people don't always have the outcomes that have been described in this thread. Having a bad surgical outcome to me is more of a risk than the risks of the biologics.

Yea no doubt that surgery is a big deal, I don't take it lightly. I am / was just scared of the biologics but this thread has me leaning in that direction for sure.

As for it potentially being Crohn's yes, that part is scary and I've never gotten a great answer into exactly what it is. One doc said Crohn's because there was inflammation in the terminal ileum, then another doc said that was just "backwash" from the colon.

MariaMaria said...
Poopydoop sounds like your diet is more inline with IBD-AID which is an updated SCD protocol. It allows oats, sweet potatoes, variety of beans, plenty of dairy (hard cheeses mostly), etc. I switched to this diet and was so relieved to be able to expand my eating options with no recurrence of symptoms. SCD is incredibly rigid, cutting out entire food groups as a precaution. When it does work for someone, hard to say what the true culprit was. I agree with iPoop, "SCD-light" is a worthy goal - if SCD does work for you the next step can be manipulating it to see what you can and cannot tolerate without starving yourself and losing enjoyment for life.

https://www.umassmed.edu/nutrition/ibd/foods-list-for-ibd-diet/

I do miss oats and potatoes for sure.

It's hard with adding back foods in because I'm not 100%. If I was in remission then I could add a food back and see if I'm still in remission, but when I'm symptomatic it's hard to know how a given food effects me because maybe I would have been even better without that added food.

poopydoop said...

Hi MariaMaria that's interesting to know. I never investigated the ibd-aid diet, I got disillusioned by (failed) attempts at scd and veganism, so I've just been doing trial and error to figure out which foods aggravate my symptoms and which ones don't. Drugs have been the most effective means for me in reducing inflammation but I still try to eat healthy, and avoid things which clearly make me feel worse.

If there would be a definitive recipe for healing myself with diet I would have followed it. Often when I have talked with others taking immunosuppressants they also said they tried different diets without success. I think it's easy for people who had success with diet to assume everyone else can too, but I also think that it's such an individualised problem that we cannot apply blanket diet rules to everyone.

I very rarely eat junk food and i have been gluten and dairy free for the most part of 4 years. Dairy gives me diarrhoea very obviously, even lactose free options. I think it has to do with the fat rather than the lactose. I don't even know if I need to avoid gluten any more, now that my bowel is quieter, and am considering re-introducing it in small quantities.

My guess is it's the protein in dairy (e.g. casein) that's causing your problems, not the fat
Posted 4/17/2019 9:18 PM (GMT 0)

David1991 said...

I do miss oats and potatoes for sure.

It's hard with adding back foods in because I'm not 100%. If I was in remission then I could add a food back and see if I'm still in remission, but when I'm symptomatic it's hard to know how a given food effects me because maybe I would have been even better without that added food.

Honestly I would just add them back in.... i think you won't notice a difference in terms of symptoms, but if you do then you can cut them out again. I've been adding foods back gradually during my 3 year flare, because life is miserable enough dealing with active colitis, and if they don't make the symptoms worse then why not?

To answer your other question, from what I can remember I was intolerant to many of the vegetables, some of the fruits, dairy including yoghurt (an SCD staple..) and red lentils (I am fine with other legumes but not these!). I tried cooking some of the SCD breads with nut flour and made myself sick. I don't eat fish because I hate the smell/taste so all the fish options were out for me. I also avoided potatoes for 2 years for no good reason other than because Elaine said so...it was a very unhealthy diet for me.
Posted 4/17/2019 10:08 PM (GMT 0)
To answer your question, it was entyvio and remicade that did not help me. Someone mentioned that with the possibility of chrohns they’d do the temp which is right. I don’t like to say exactly what the surgeons I saw said because I feel like that gets into giving medical advice...but I really think you should talk to a couple. They will tell you why with chrohns they are conservative and review your case better than us on the internet can. And again it isn’t necessarily life long. Might be, might not. But let a few GIs tell you their differing opinions on that.. smile and keep in mind that the field of biologics is rapidly changing. Many things are in the pipeline. See lots of doctors if you have that option. Best thing I ever did was search for the right ones. And the better I feel the less I come around to this place like another poster said. It has helped me in my sick times for sure.
Posted 4/18/2019 12:12 AM (GMT 0)

poopydoop said...


Honestly I would just add them back in.... i think you won't notice a difference in terms of symptoms, but if you do then you can cut them out again. I've been adding foods back gradually during my 3 year flare, because life is miserable enough dealing with active colitis, and if they don't make the symptoms worse then why not?

To answer your other question, from what I can remember I was intolerant to many of the vegetables, some of the fruits, dairy including yoghurt (an SCD staple..) and red lentils (I am fine with other legumes but not these!). I tried cooking some of the SCD breads with nut flour and made myself sick. I don't eat fish because I hate the smell/taste so all the fish options were out for me. I also avoided potatoes for 2 years for no good reason other than because Elaine said so...it was a very unhealthy diet for me.

Yea...potatoes would be nice. Pasta would be really nice :D lol

ASellers said...
To answer your question, it was entyvio and remicade that did not help me. Someone mentioned that with the possibility of chrohns they’d do the temp which is right. I don’t like to say exactly what the surgeons I saw said because I feel like that gets into giving medical advice...but I really think you should talk to a couple. They will tell you why with chrohns they are conservative and review your case better than us on the internet can. And again it isn’t necessarily life long. Might be, might not. But let a few GIs tell you their differing opinions on that.. smile and keep in mind that the field of biologics is rapidly changing. Many things are in the pipeline. See lots of doctors if you have that option. Best thing I ever did was search for the right ones. And the better I feel the less I come around to this place like another poster said. It has helped me in my sick times for sure.

Yea one fear of mine if I get surgery is I remove my colon and then soon afterwards they come out with a cure or some fantastic medicine for it that could have saved my colon.
Posted 4/18/2019 2:11 AM (GMT 0)

David1991 said...


Thanks for this. Sounds like it's been a blessing.

So your yard work is tempered and you can't workout much due to just general declining health or what exactly?

Be careful with too much Benadryl (diphenhydramine)....there's been a link with dementia.

That is one concern with working as a dentist, I don't work for a big corporation so my disability insurance is on my own and they won't cover me for anything IBD related sad

I ran track and played some sports like baseball, basketball, cross country track, football then played pick-up sports in college and beyond. I worked out with weights and went jogging and ran local races like 10K's, sprint triathlons and just always was trying to improving strength, endurance and dexterity to be in good enough shape to do whatever thing came up: white water canoeing, snow skiing, water skiing; hiking, et al.

If ever I went really heavy into training I would get sick (taking pre Remicade and post). I might drop the kids off for practice and jog around the ball field for 20 minutes (that was moderation and not bothersome. But I when I would find an area high school track and jock 6 miles each way to get then then start sprint workouts because I wanted to see how fast I could run could improve to; that's was just too much over time for my body.

I just pushed myself too hard for what my body was meant to handle with IBD.

So doing yard work is fine. But going out Saturday at 8 am and working through lunch (not eating) and stopping only when you are crawling inside the house to shower at 7 pm is too much; especially when its 90-100 degrees out. And especially if you're already tired from working hard at your job.

That's what I'm talking about.

Moderation is key.

As for Benedryl...I take 1-2 tablets every 8-10 weeks. Is that a lot?

Hate to hear that about your work!
Posted 4/18/2019 2:08 PM (GMT 0)

Burli said...


As for Benedryl...I take 1-2 tablets every 8-10 weeks. Is that a lot?

I'd have to look up the study again to be sure, but that seems fairly minimal.
Posted 4/18/2019 2:42 PM (GMT 0)

David1991 said...


Yea one fear of mine if I get surgery is I remove my colon and then soon afterwards they come out with a cure or some fantastic medicine for it that could have saved my colon.

I worried about that a lot. Now it's been 5 years.
Totally worth it to be able to live my life how I want for the past 5 years. I was pretty much homebound before surgery. I know that's not your case, but that is likely the case for a lot of people who opt for surgery. Hopefully things stay relatively calm so it's a nonissue for you.
Posted 4/18/2019 5:47 PM (GMT 0)
I have thought about that too but the more I read about it the more I feel that a "cure" is at least 10-20 years away. Scientific research moves really slowly.
Posted 4/18/2019 6:12 PM (GMT 0)
I'm a bit more pessimistic on a cure, I truly hope it's within our lifetimes but I wouldn't bet-the-farm on it. It's just my sorta luck that I'll die an old man, and then the very next day the cure will be found :-P
Posted 4/18/2019 6:16 PM (GMT 0)
IBD has been around for a very long time, and there have been a lot of advancements, but nothing even remotely similar to a "cure". There are a lot of AI illnesses, and none are close to a cure as far as I know. I don't even think I've seen anything all that hopeful.

The likelihood of a cure seems on-par with the likelihood of a successful colon transplant (which isn't currently possible but may be available someday). I guess we can all sit back wait for that too, but at the moment, I am living well sans colon and I wouldn't elect for a colon transplant even if it were available.
Posted 4/18/2019 11:14 PM (GMT 0)
No cure, but my doc told me that he expects there to be tests available within the next 10 years that will be able to determine which biologic will work best for each patient
Posted 4/19/2019 9:47 AM (GMT 0)
Yea unfortunately I don't imagine a cure will be available any time soon, potentially not even in my lifetime. Medicine moves so slowly, for good reason but still frustrating. Even if the golden cure was found today it would be another decade before it was available for human use.

Not to mention the GI tract is so complex. As essential as the heart is, it's mainly a pump, I think we'll have replacement hearts (already have LVADs) before any replacement colons.

And I agree Notsosicklygirl, as much as I hate this disease, I know for many it's much worse. I've only had one or two flares that really screwed me up in terms of pain and isolation. If I was always living like that I probably would have gone on a biologic years ago.

My appointment with my new GI at Penn is in the first week of May. I'm guessing he'll want a colonoscopy which I'm sure will show some inflammation considering I still have blood and mucous in about half of my BMs. I'll see what he has to say but this thread has opened me up a lot to the idea of a biologic, would probably want to start with Entyvio.
Posted 4/19/2019 12:00 PM (GMT 0)
I think this thread turned out very good, really explored the topic well. In the end, you learn what you can by doing your homework and make a decision on what feels right and the best path forward. A scope might not be bad, to really assess where you are at and see if biologic treatment makes sense for where you are at today.

Depends how bad your symptoms are, and what the doctor suggests. Speaking of which, can't remember your symptoms. How many bms a day, any urgency, any blood, are they formed?
Posted 4/20/2019 12:20 PM (GMT 0)

iPoop said...
I think this thread turned out very good, really explored the topic well. In the end, you learn what you can by doing your homework and make a decision on what feels right and the best path forward. A scope might not be bad, to really assess where you are at and see if biologic treatment makes sense for where you are at today.

Depends how bad your symptoms are, and what the doctor suggests. Speaking of which, can't remember your symptoms. How many bms a day, any urgency, any blood, are they formed?

Blood has greatly diminished since going on SCD, but half of my BMs are still lined with blood. I don't typically have a lot of urgency, I can hold it if I need to and have never had an accident but often if I don't go when I feel the urge too I will cramp later and can't get it out. I go 1-4 times a day depending on the day. On the bristol stool scale they can range from 2s to 5s maybe even a 6 depending on the time. Often more formed in the morning and less with subsequent BMs.

So on the whole I live an 80-90% normal life aside from the frustrating dietary restrictions. One flare in college and one flare in dental school interfered with my life quite a bit but otherwise pretty manageable fortunately. The pain used to be worse than it is now for whatever reason. When I took 3 weeks off the SCD and ate a bunch of junk (I realize that wasn't the best transition) I bled quite a bit more and cramped more....but man it was nice getting to eat out again and enjoy whatever I wanted.
Posted 6/4/2019 9:32 AM (GMT 0)
Man, I just don't know if I can bring myself to go on a biologic. After this thread I was finally ready to try Entyvio.

Then I had a skin cancer scare. Something on my nose looked just like skin cancer and a dermatologist was concerned. Thank God the biopsy came back normal but it very much put it at the forefront of my mind that my already higher risk of skin cancer would be significantly elevated with biologics.

Then in an IBD facebook group someone asked if anyone had issues with Humira and the majority of responses were negative ranging from only a short term benefit to terrible side effects and someone dying of leukemia

then I just read 2 case reports of Progressive Multifocal Leukoencephalopathy from Remicade.

This stuff is just terrifying.

I just did a calprotectin test that came back at 74....so "borderline". Normal ESR. Normal CRP. I get blood and mucous though so I don't know how bad the actual inflammation is. From my blood and stool markers it seems not bad.
Posted 6/4/2019 10:56 AM (GMT 0)
Did you know that mesalamine can cause kidney failure, heart inflammation, and blood anomalies (all rare odds like those you describe for biologics)?
Posted 6/4/2019 11:37 AM (GMT 0)

iPoop said...
Did you know that mesalamine can cause kidney failure, heart inflammation, and blood anomalies (all rare odds like those you describe for biologics)?

Yes mesalamines can have side effects, in fact I am allergic and cannot tolerate them at all. But there is no comparison between the possible downsides of biologics compared with mesalamines. In fact mesalamines are proven to actually prevent cancer over and above their ability to dampen down overall inflammation. I have yet to see a 'black box' warning associated with mesalamines.
Posted 6/4/2019 12:05 PM (GMT 0)
I'd say kidney failure is pretty darn serious. Can't just buy another one at Walmart :-p

My point seems lost here, there's rare side effects in everything from tylenol to eating food (salmonella, gluten-intolerance, dairy-intolerance, shellfish allergies, peanut allergies, etc etc). I could get killed in an car, high odds of that. It's really risks versus benefit analysis. Yes, terrible things can happen, what are the odds of them, what are the odds of me getting a benefit from it? Human nature tends to make us gravitate to worstcase scenarios, and assume that'll be us for certain! Everyone is a little scared, present part included, when starting a new class of meds. However, the odds are far more likely you will get a positive response from remicade/entyvio then die. And if a biologic doesn't work for you then stop it, and try something else.

Yet 0.04% odds from a biologic terrify people, when mesalamines have similar odds of bad side effects. Odds biologics, mesalamines will help you are about 65%. It's something I am trying to dispel in people not re-enforce lol.

David1991, avoid thiopurines (azathioprine/6mp/imuran) if you've had a prior skin cancer. Biologics do not increase skin cancer odds. As far as surgery goes, there's a single-digit odds of dying through it, which is much higher than the odds of a biologic. Higher odds of complications through surgery. There's a reason no colorectal surgeon will touch you unless you've failed two bioligics, 1st.
Posted 6/4/2019 12:42 PM (GMT 0)
I think what iPoop is getting at is when you say "significantly elevated risk of cancer" that's just false. You're statistically more likely to die in a car accident, or getting a stroke yet you don't see people freak out about those.
Posted 6/4/2019 1:34 PM (GMT 0)
And the other cancer to be concerned about is colorectal cancer, something we have higher odds of when our UC isn't well managed. Prolonged inflammation boosts CRC odds.
Posted 6/4/2019 5:18 PM (GMT 0)

iPoop said...
Did you know that mesalamine can cause kidney failure, heart inflammation, and blood anomalies (all rare odds like those you describe for biologics)?

Here's the difference: I've never met anyone who personally had serious issues with mesalamines. I've never met anyone on the facebook groups or on this forum who reported horrible issues from them, ever.

I just saw 10 different people talk about nasty side effects from biologics in ONE conversation on a facebook group. Over the years I've heard of countless negative reports.

So I don't think they're at all comparable.

IamCurious said...

iPoop said...
Did you know that mesalamine can cause kidney failure, heart inflammation, and blood anomalies (all rare odds like those you describe for biologics)?

Yes mesalamines can have side effects, in fact I am allergic and cannot tolerate them at all. But there is no comparison between the possible downsides of biologics compared with mesalamines. In fact mesalamines are proven to actually prevent cancer over and above their ability to dampen down overall inflammation. I have yet to see a 'black box' warning associated with mesalamines.

Exactly.


When you say it is proven to prevent cancer over and above their ability to dampen down overall inflammation, are you referring to specifically colon cancer? Do you have references for that?

Bull101 said...
I think what iPoop is getting at is when you say "significantly elevated risk of cancer" that's just false. You're statistically more likely to die in a car accident, or getting a stroke yet you don't see people freak out about those.

That's a poor analogy. You're more likely to get in a car accident than a lot of things people worry about. Car accidents aren't a medical condition, most aren't fatal, we (should) do all we can to prevent them, and it's not something that can be creeping up in your health undetected like cancer.

Also how can you say biologics don't cause a significantly elevated risk of cancer when that's a known and stated side effect? If it wasn't significant it wouldn't be reported.

iPoop said...
And the other cancer to be concerned about is colorectal cancer, something we have higher odds of when our UC isn't well managed. Prolonged inflammation boosts CRC odds.


Yea :\ I really don't know what to do. At least the colon cancer wouldn't be "my fault". I don't know how I'd deal psychologically with knowing a medication I chose to take gave me cancer.


Also, I do not mean to dismiss your point. I know logically it's true, and I tend to be a very logical and objective person in life, but there is definitely emotion here and it scares me. Additionally, most of the anecdotes I'm hearing on this Facebook group about biologics are negative. That plus the recent skin cancer scare is really getting to me. My new GI doc is one of the head docs at Penn and he says he thinks the response to biologics really is only 30-40% or so in his experience, and that we would have to be concerned about skin cancer IIRC.
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