Have Never Achieved Crohn's remission...Help

[AndrewEsq]

Hello,

I am fairly new to the forum, and may have posted once or twice before. I'm pretty frustrated because, after three years of being diagnosed and on numerous types of medication, my Crohn's Disease is still active. I live in the United States, supposedly with one of the "best healthcare systems in the world" [hint: it is one of the worst] and most doctors are just absolutely clueless about Crohn's.

Despite having this for three years, here's what I don't know, because no doctor can explain it to me:

1) Why do some people achieve remission while others don't?
2) When someone has a flare-up, why do they have abdominal pain?
3) When someone has a flare-up, why do they have diarrhea?
4) After being on Humira for nearly a year, why am I still having flare-ups 2 to 3 times a week?

Here's my story: in law school, I started getting Crohn's Disease symptoms. I was 23 and this was January 2011. It took a year and a half to get diagnosed. When I turned 26, I was tossed off my family's health insurance plan [thanks to our laws] and had to get my own health insurance. Since I was making $13,000 a year out of law school, I was luckily able to do it on Obamacare, and paid a lower price.

During this time, I was placed on Pentasa, then Entocort [this is the only medicine that sort of worked, as I had a flare maybe once a month] and then on Humira, where I started having flares several times a week.

While I have regained my weight and make much more money, I still don't understand why these flares are occurring, nor are any doctors able to explain to me the mechanisms of this "disease" that I have. I recently tried antibiotics, which also failed.

Amazingly, my test results a month or two ago show that inflammation exists in only an inch of my intestine. However, this confounds and confuses me as to why the medicines I'm on have been, more or less, a failure. I hear people who say they are in remission and I truly wonder how they do it. Is it a hoax or a myth? I've been diagnosed with "mild to moderate" Crohn's, so I'm just frustrated and confused.

I'm also pretty angry with the healthcare system in the U.S. The only thing doctors, big pharma and the insurance companies really seem to want is money and to line their pockets with it. Despite Humira only semi working, my gastro has not hinted I change medicines. He upgraded me to two shots every other week three months ago, but that did little to improve things. My current gastro is a specialist in Manhattan.

I'd understand it if *no one* ever achieved remission. If no one ever did, then I wouldn't say anything and accept things for what they are. However, considering people have achieved remission, I am really wondering what I'm doing wrong. I eat healthy and I am relatively fit. But, *no one* says diet is causing this, including Crohn's & Colitis Foundation.

For those who have achieved remission, how did you do it? Still trying to find the answer, after five years with cramping and other wonderful things lol.

Blah :stinks:

 

[RickS]

Battling Crohns

Hi Blah,

I just signed up to read up on the diff of remicade vs methotrixate.
Well here is my story, hope it helps,

I live in Ontario Canada.
diagnosed with crohns in the illium at 35, now 56, 2 resection surgeries later, lots of pantasa before the first op, none/very little between 1st op and 2nd op. I guess 10 years apart the ops.
Basically pentasa was a waste of time. I laugh at the new gi dr, saying I took 1000's of them, he says water under the bridge.
New GI dr I saw after the second op, saying if untreated how many more ops do I want?
Tried me on Imuran and I got a gut ache after a few weeks on it.
Applied for Remicad sponsorship with Ontario gov, got rejected twice.
Now he has me on methotrixate injection, once a week, for about a year now. started with 1cc, then we dropped it down to 6/10cc, once a week. This was after a scope saw some small ulsers but no change.
i take Mtx on sunday night, take the folic acid 5mg on tuesday. Crohns is in remission, just feel crappy, nauseous, tues/wed the worst. Still get joint aches, skin eczema is in remision as well. I do have some small mouth ulsers. I will see the dr this month to go over my treatment with him. Probably yet another scope :thumbdown:
To deal with the side effects, I Vap alot of thc, it allows me to tolerate the Mtx period. Too bad many do not have this available to them, say in a oil form. If I had to go to work, I know I'd be dragg'n my a$$ around and not in a very good mood.
I will try to answer your ?
1) Why do some people achieve remission while others don't?
Depends on what drugs they are on, dosage. For some maybe no drugs at all work
2) When someone has a flare-up, why do they have abdominal pain?
You have ulsers/sores, your immune system is out of wack attacking the intestines.
3) When someone has a flare-up, why do they have diarrhea?
You guts are not functioning properly, water is getting expelled vs it should be absorbed.
4) After being on Humira for nearly a year, why am I still having flare-ups 2 to 3 times a week?
I ain't the dr, but did you try the other therapies, Imuran, Mtx? Might work better for Crohn's, than what you are on know. Mtx is cheap. Only one way to tell, try it out. I am a guinea pig just like you are Now I am a pin cushion too.
Now where is the guinea pig icon?

edit: with mtx, I find if/when my stomach gets empty, I start to feel more nauseous, so I am eating a lot more now, maintaining weight.
even on mtx, i was having mutiple BM a day. So we tried cholestyramine (Olestyr) and one packet a day, solves the bile salt diarreha issue for me. I am down to one BM a day, usually just after I get up in the morning, what a treat after years of suffering with multiple BM and having to keep an eye out for a can, pockets stuffed with tissue, for use at a moments notice.:sign0085:
I take B12 vitamins daily, 500-100 mcg iirc

Rick

 

[Clash]

Welcome to the forum.
1) Why do some people achieve remission while others don't?
Crohns is a very individual disease and everyone responds to meds differently. It can depend on what is pushing the inflammation in your active disease. Location, severity, disease progression and other things also play a role.

2) When someone has a flare-up, why do they have abdominal pain?
Inflammation is simmering in your GI tract. This inflammation leads to ulceration, swelling which causes narrowing. So food stuffs can cause pain going over the ulceraction and narrowing can cause issues with food trying to pass through. It's similar to having and ulcer on your skin or in your mouth they're painful.

3) When someone has a flare-up, why do they have diarrhea? It can really depend on the location of your disease some with small bowel disease experience constipation instead. The inflammation and ulceration along with the disease process can create these states of D or C.

4) After being on Humira for nearly a year, why am I still having flare-ups 2 to 3 times a week?
It could be that humira alone isn't enough and you need to add methotrrxate or imuran or shorten the humira schedule to weekly. This can be determined by doing a trough level test to determine if your humira levels are at a good level.

Also tnf blockers don't work for everyone. It really depends on what is pushing your inflammation. For a lot of people it is tnf alpha and that is why remicade and humira work so well for them. For others it is other mechanisms and so entyvio or other biologics that arent anti tnf blockers.

There is no cure for CD. CD is a cyclical illness so it waxes and wanes from flare to remission. The meds available work to keep you in the remission state. For some that is easily achieved for others not as easy.

My son was dxed at 15 and remicade with methotrexate wasn't enough to get him in full remission. A small area at his ileocecal valve at the end of the terminal ileum was chronically inflamed and he required surgery. He is on Humira now with methotrexate and just had to move to weekly humira because the disease has come back and spread from small bowel throughout colon and rectum. He is asymptomatic so no symptoms, just a lack of weight gain and some anemia bit no pain, no D or C. He's 19 now and facing the fact that 2 of the main drugs may be a bust for him. It can be challenging but we keep researching and moving forward.

If a med or GI isn't working for you then it may be time for another opinion. It is important to have a good relationship with your doc with good communication. It's no different than a lawyer/client relationship there needs to be open communication and trust for it to be successful.

Good luck I hope you find remission soon.

 

[HorseAngel]

Hello,

I am fairly new to the forum, and may have posted once or twice before. I'm pretty frustrated because, after three years of being diagnosed and on numerous types of medication, my Crohn's Disease is still active. I live in the United States, supposedly with one of the "best healthcare systems in the world" [hint: it is one of the worst] and most doctors are just absolutely clueless about Crohn's.

Despite having this for three years, here's what I don't know, because no doctor can explain it to me:

1) Why do some people achieve remission while others don't?
2) When someone has a flare-up, why do they have abdominal pain?
3) When someone has a flare-up, why do they have diarrhea?
4) After being on Humira for nearly a year, why am I still having flare-ups 2 to 3 times a week?

Here's my story: in law school, I started getting Crohn's Disease symptoms. I was 23 and this was January 2011. It took a year and a half to get diagnosed. When I turned 26, I was tossed off my family's health insurance plan [thanks to our laws] and had to get my own health insurance. Since I was making $13,000 a year out of law school, I was luckily able to do it on Obamacare, and paid a lower price.

During this time, I was placed on Pentasa, then Entocort [this is the only medicine that sort of worked, as I had a flare maybe once a month] and then on Humira, where I started having flares several times a week.

While I have regained my weight and make much more money, I still don't understand why these flares are occurring, nor are any doctors able to explain to me the mechanisms of this "disease" that I have. I recently tried antibiotics, which also failed.

****** hello and yes I get it crohns sucks and remission might never happen for you. I've only spent 1 year in remission and I was diagnosed at 7, I'm 34. I spent years paying for my own care being self employed before obama care. They wouldn't insure me because I had pre existing conditions. Now I'm totally disabled so no work equals Medicaid fully insured. Go figure. I worked so hard couldn't get insurance body couldn't take it anymore now that I'm fully disabled I get help? Crazy system I agree. 1 answer is not everyone goes into remission. As big a talk these GI doctors give they still have no idea what even causes our disease. Remember that the next time the meds don't work. They really have no idea and do the best they can with drugs that reduce systemic inflammation and those that reduce hyperactive misdirected immune systems. Almost every drug for crohns is used in every other rheumatic disease and rarely are specific to crohns.
2. Pain, pain is your body warning you something is up. I love with a fentanyl patch on me 24-7. My pain is always here. Really depends what's hurting but the general answer to the question is inflammation plus years of thickening plus cramping tears and ulcers. 3, you swell inside maybe ulcerate too and your area of flare cannot do it's job and quickly shoots the poo through. 4. I hate humira it's never worked for me. **** this forum is full of folks that like you never really get better. You may just need someone to listen I know that helps me reading everyone's stuff. I also would recommend examining to see if you have another disease with the crohns. I have lupus which complicates my treatment and makes remission less like has crohns meds flare my lupus. It may be a reason why you can't get off the flare up nightmare. I hope you feel better

 

[wild_one353]

different levels of disease severity can explain some of the differences between how people respond to meds, but diet plays a big role. you will need to do more then just take meds to control your symptoms. Eliminate lactose(milk sugar) and sucrose(white refined sugar) from your diet, the only thing sweet you should be eating is an occasionally apple, raspberry or blueberry, and since there is sugar in those foods keep those at a minimum don't pig out on them. soluble fiber from Grains are your new best friend, get lots of calories from oats. eliminate meat entirely.
So many other tips for you my friend, and many based firmly in science and from my own experience of managing largely without meds for almost 7 years now.

A bad diet can "cause" crohns, only because the lack of dietary fiber which support health intestinal microbes can be protected from damage from things like antibiotics and other chemicals in the food supply.But changing your diet will not cure IBD, because it cannot restore the bacteria that have become extinct and healthy diversity is lost, fecal microbiota transplants have been shown to cure ibd some patients by restoring these missing bacteria that regulate immune responses, see my link below for more info.

 

[LeafCrAzY]

Interesting...

I've just recently been diagnosed so I'm a few steps behind you in tests and trying different drugs.

However; I kind of feel the same way... except I don't really know if I'm in a flare. I get mild abdominal pains here and there, and twitching occasionally.

Have you tried a new GI?
IIRC stress contributes to flares...working in law is stressful?

 

[Lady Organic]

as mentionned above, it is important to feel in good relation with our GI. if you feel your Gi doesnt not answer your questions or doesnt offer ideal treatment, you can always ask for a second opinion.
Its been 3 months since your upgrading of HUmira, maybe your dr wants to wait a little longer before offering something else. As you may know we dont have tons of options of treatment and drs like to try fully each one before stopping them, especially biologics such as Humira. Since your report mentions only 1 inch sick, your dr may find the situation not critical (and prolly much better than before) and has hope this inch will resolve soon with the new Humira schedule. maybe you just have to be a little more patient. Be positive it will resolve. :smile: good luck.

 

[D Bergy]

1) Why do some people achieve remission while others don't?

Crohns is a description of symptoms. The name does not tell us anything about what causes it. Your Crohns and my Crohns may not have the exact same cause. It is unlikely they have nothing in common but there are likely variables as well.

I treat myself. Not because that was my first choice. I couldn't achieve a lasting remission either.

From my experience, and numerous studies, mycobacterium avium subspecies paratuberculosis or MAP is involved in the disease. If you can manage to rid yourself of most of it, you may improve. There are several threads on possible MAP involvement on the forum.

That is not the only pathogen I found causing my symptoms, but it was an important one. The disease is not always simple.

Basically, most of the medications for Crohns attempt a very precise balancing act. Try to prevent the body from responding to the presence of certain bacterium, without taking down the entire immune system. That's a pretty difficult proposition to begin with.

A similar concept is used in preventing organ transplant rejection. Some of the same drugs are used.

In either scenario, a very delicate balance has to be achieved in order for it to work. There are many difficulties to overcome. People become resistant to drugs over time and dosage and medications may have to change. Your body changes, and your immune system response is not necessarily static.
Some medications have varying effects in different people. Over time they can have differing effects in one person.

In my mind, it is a miracle they ever work given the obstacles.



2) When someone has a flare-up, why do they have abdominal pain?

I usually did not have pain, so that is not the same for everyone either. When I did have pain, it was either very minor or very extreme. The extreme pain meant I was in big trouble. It likely depends on how big the inflamed area is, how deep in the intestine does it go,and how many nerves are located in that area. Some people are more sensitive than others.

3) When someone has a flare-up, why do they have diarrhea?

I believe it is for the same reason you have diarrhea when you have the flu virus or rotavirus or any other common infection that involves the intestinal tract. Your body is working hard to rid itself of the infection. In our case, it is not that effective but the guts are going to try their best.

4) After being on Humira for nearly a year, why am I still having flare-ups 2 to 3 times a week?

The dosage may need to be adjusted or maybe it just is not the most suitable drug. In the end, the doctor has no way of knowing what medication will work for any given person, or if any of them will work.

I would ask what the game plan is, longer term. What is next if you don't improve?

I never go to a doctor without a long list of questions. Usually not even Crohns related questions. If I am going to be part of the world's most expensive Healthcare system, I am darn sure going to squeeze every bit of information out of it I can.

Good luck.

Dan

 

[LeafCrAzY]

1) Why do some people achieve remission while others don't?

Crohns is a description of symptoms. The name does not tell us anything about what causes it. Your Crohns and my Crohns may not have the exact same cause. It is unlikely they have nothing in common but there are likely variables as well.

I treat myself. Not because that was my first choice. I couldn't achieve a lasting remission either.

From my experience, and numerous studies, mycobacterium avium subspecies paratuberculosis or MAP is involved in the disease. If you can manage to rid yourself of most of it, you may improve. There are several threads on possible MAP involvement on the forum.

That is not the only pathogen I found causing my symptoms, but it was an important one. The disease is not always simple.

Basically, most of the medications for Crohns attempt a very precise balancing act. Try to prevent the body from responding to the presence of certain bacterium, without taking down the entire immune system. That's a pretty difficult proposition to begin with.

A similar concept is used in preventing organ transplant rejection. Some of the same drugs are used.

In either scenario, a very delicate balance has to be achieved in order for it to work. There are many difficulties to overcome. People become resistant to drugs over time and dosage and medications may have to change. Your body changes, and your immune system response is not necessarily static.
Some medications have varying effects in different people. Over time they can have differing effects in one person.

In my mind, it is a miracle they ever work given the obstacles.

Hey Dan,

What do you do to control your MAP?

 

[D Bergy]

I use frequency treatments to damage the MAP bacteria. Its not an approved treatment, but so far it has been keeping me upright.

I used the same method to bring my wife's health back when she aquired lyme disease, so I had some idea how to approach Crohns.

Dan