My sister is in bad health

just got word that her health is not very good and she is not responding to new drug treatment and the doctor is down to a final new drug just launched
She starts new drug in few days and if she does not respond they will have to remove her colon

The steroids have made her immune system so weak she barely has any strength left
She has horrible colon problems as does my dad and brother

Just say a prayer is all I ask

She has a world renown Doctor and she is a doctor herself with 3 small kids

She was a former 5.5 tennis player and a straight A student her entire life and it’s sad to see her at this low point
Yet she still refuses to take a leave from work

If this was just 30 years ago , she would have been dead

She has been suffering for the last 3 months in extreme pain and I did not know until recently as she is super private
My mom had to tell me

If I was in such bad health I'd follow the advice to the letter from the documentary A Beautiful Truth.

All you can really do is give your body the best possible means to repair itself - and organic food is what the documentary is about.

Very best of luck to your sister. I hope she does well in the future. Having a severe stomach condition myself I have an idea of what she is going though. I have not had my colon removed, but read of many others that have and they tend to write positive of the procedure. It is not ideal but better than what was happening in the past, is what they often write.

Mac33 said:

If I was in such bad health I'd follow the advice to the letter from the documentary A Beautiful Truth.

All you can really do is give your body the best possible means to repair itself - and organic food is what the documentary is about.

Click to expand...

This is a genetic autoimmune problem and no foods will cure it

Soul said:

Very best of luck to your sister. I hope she does well in the future. Having a severe stomach condition myself I have an idea of what she is going though. I have not had my colon removed, but read of many others that have and they tend to write positive of the procedure. It is not ideal but better than what was happening in the past, is what they often write.

Click to expand...

The colon removed I hope not
She has 2 Final drugs
But if removed , then what ???

If it is Ulcerative colitis, removing the colon will cure. If it is Crohn's... it may help. Hard to say since you haven't given us a diagnosis. If it is a GIST, the drugs slow it down and resection will improve things until it is unresectable.

As for the eat only organic/natural foods comment. Many organic/natural foods are not what they claim, the cost is just more. Furthermore, 100 years ago, the average life span was significantly shorter (even when you take out the childhood deaths), and it gets worse the further back you go (despite foods being more organic as you go back in time, less processed). Now I am sure that process food is not "good for you" but the real key is everything in moderation.

Most importantly, I am sorry she is going through this. I will keep her, her children and her family (you) in my prayers.

RVAtennisaddict said:

If it is Ulcerative colitis, removing the colon will cure. If it is Crohn's... it may help. Hard to say since you haven't given us a diagnosis. If it is a GIST, the drugs slow it down and resection will improve things until it is unresectable.

As for the eat only organic/natural foods comment. Many organic/natural foods are not what they claim, the cost is just more. Furthermore, 100 years ago, the average life span was significantly shorter (even when you take out the childhood deaths), and it gets worse the further back you go (despite foods being more organic as you go back in time, less processed). Now I am sure that process food is not "good for you" but the real key is everything in moderation.

Most importantly, I am sorry she is going through this. I will keep her, her children and her family (you) in my prayers.

Click to expand...

Not Crohns
The other one

Good. ulcerative colitis in theory can be cured with removal of the colon (the large intestine). it is a big surgery, but patients typically do well afterwards.

Still, better to keep it if you can.

RVAtennisaddict said:

Good. ulcerative colitis in theory can be cured with removal of the colon (the large intestine). it is a big surgery, but patients typically do well afterwards.

Still, better to keep it if you can.

Click to expand...

I am hoping the meds work or that only part of the colon is removed

Surgeons can fix it up if only part is gone
If entire thing then life is hard

dgold44 said:

The colon removed I hope not
She has 2 Final drugs
But if removed , then what ???

Click to expand...

Removing the colon tends to give people with one of the types of colitis more freedom. Before, one needs to be around a bathroom all the time. Without a colon, and having waste collected in a bag, one is able to travel more freely. At least that is what I read others mention.

On the bad side fatigue typically remains. There can also be the problem of the waste being backed up. I see some writing about having this problem from time to time, and needing to visit the ER to unblock the backup.

I hope the remaining medication helps also. If she hasn't tried it, possibly dietary changes can be beneficial. That is how I control my colitis, called microscopic colitis, with dietary changes. The drugs given me to try didn't help improve my condition sadly.

dgold44 said:

This is a genetic autoimmune problem and no foods will cure it

Click to expand...

That's funny, since it's foods that are causing it.

But go ahead and stick with modern medicine, and see where that gets you.

RVAtennisaddict said:

As for the eat only organic/natural foods comment. Many organic/natural foods are not what they claim, the cost is just more. Furthermore, 100 years ago, the average life span was significantly shorter (even when you take out the childhood deaths), and it gets worse the further back you go (despite foods being more organic as you go back in time, less processed).

Click to expand...

Talk about bad logic!

2good4U said:

Talk about bad logic!

Click to expand...

The bad logic is assuming it will cure everything and that modern medicine/advances are all "harmful".

Sorry you missed the point

Praying for you and your sis and family.

2good4U said:

That's funny, since it's foods that are causing it.

But go ahead and stick with modern medicine, and see where that gets you.

Click to expand...

You’re a total imbecile who has the logic and understanding of a 4 year old
This is a genetic disease you putz

2good4U said:

That's funny, since it's foods that are causing it.

But go ahead and stick with modern medicine, and see where that gets you.

Click to expand...

Natural medicine only goes so far and you sound like a whack job with zero understanding of genetics and autoimmune

My manager has gone back and forth on diagnosis between Crohns and UC but the net is that it's inflammation and it appears to be related to stress and diet. It is a genetic condition but it flares up based on environmental conditions. MS is similar. The idea of the drugs is to put you in remission and keep you there for as long as possible.

I've chatted with many with colon cancer that have had parts and major parts of their colon removed. In some cases, they can remove a section and reconnect the pieces and in others, they wind up with a colostomy. Those with a permanent colostomy have told me that it isn't that bad.

You do what you have to do to survive and maybe something better comes along down the road from our medical researchers.

I don't know what tennis is like with a colostomy or if it is even advisable. I know that people swim, run and do other things with them but I don't know about tennis. I quite understand the potential problems with a sport like tennis with a bag.

I hope she can make it with the drug but a colostomy isn't the end of the world.

our prayer's for your sister @ her family
wish her luck with the new drug treatment

check out dr joel wallach on youtube, or peter glidden

Soul said:

Removing the colon tends to give people with one of the types of colitis more freedom. Before, one needs to be around a bathroom all the time. Without a colon, and having waste collected in a bag, one is able to travel more freely. At least that is what I read others mention.

On the bad side fatigue typically remains. There can also be the problem of the waste being backed up. I see some writing about having this problem from time to time, and needing to visit the ER to unblock the backup.

I hope the remaining medication helps also. If she hasn't tried it, possibly dietary changes can be beneficial. That is how I control my colitis, called microscopic colitis, with dietary changes. The drugs given me to try didn't help improve my condition sadly.

Click to expand...

There are two main types of Ostomies that I know about: colostomy and illeostomy. The illeostomy is at the end of the small intestine and you usually see it on the right side. Output is to a bag and it's less processed than with a colostomy as it doesn't go through the large intestine. To go to the bathroom, you just empty the bag (or throw it away if it's the disposable or closed kind). You don't need to sit on the toilet at all. Output tends to have more water content as part of the large intestine's job is to reclaim water from waste. So there's more potential for dehydration.

The colostomy is at the end of the large intestine so output is more solid and, larger I think. I have seen a colostomy bag before and the hole is fairly large.

I have heard of people going to the ER with blockages with Illeostomies before though not with colostomies. That doesn't mean that it doesn't happen - it's just that I haven't run into people that have talked about it. I've seen the recommendation to chew food thoroughly to reduce the chances of blockages.

My manager uses diet to help control problems - but that diet also includes some herbs that have fairly powerful chemical effects. Food, herbs and drugs are all just chemicals - though drugs are built and designed. She is doing reasonably well with the food and herb modifications and she has the drugs available if there are problems.

RVAtennisaddict said:

The bad logic is assuming it will cure everything and that modern medicine/advances are all "harmful".

Sorry you missed the point

Click to expand...

Most modern medicines are harmful, just read the long list of side effects they warn about.

I didn't miss anything, except modern medicine's propaganda.

dgold44 said:

You’re a total imbecile who has the logic and understanding of a 4 year old
This is a genetic disease you putz

Click to expand...

It's an imbalance, which to anyone who has seen your postings describes you to a T.

dgold44 said:

Natural medicine only goes so far and you sound like a whack job with zero understanding of genetics and autoimmune

Click to expand...

Diet, and the imbalance it engenders, is the prime factor in this 'disease'.

But hey, if you want to go with modern medicine's 'understanding', more power to you.

Might want to say goodbye to your Sister's colon why you're at it. (talk about a whack job)

rossignol said:

1000% truth

Click to expand...

The side-effects are potential. That doesn't necessarily mean that you will get all of them or even any of them.

Precision Medicine is helping to determine who gets the side-effects but it's a slow process.

2good4U said:

Diet, and the imbalance it engenders, is the prime factor in this 'disease'.

But hey, if you want to go with modern medicine's 'understanding', more power to you.

Might want to say goodbye to your Sister's colon why you're at it. (talk about a whack job)

Click to expand...

You’re the biggest dummy i have ever meet on this board and you’re iggy for being a nut job

If you drink to much water, it will kill you.

Everything is good and bad. We just don't list all the complications/side effects on everything else (oxygen, water, fruit, vegetables, etc).

But it is ironic that almost every medicine list both Diarrhea and constipation as side effects*

Placebo response rate in America is over 50% - so clearly there is a mental aspect to a lot of this.

Crohn's disease and ulcerative colitis are inflammatory conditions of the colon (us) or GI tract (crohn's mouth to the ****). Avoiding things that trigger this will make you healthier. And a diet that does not exacerbate it will help, that doesn't necessarily mean organic/natural. Diet and imbalance in diet is not the prime factor in this disease. Often emotional stress or physical stress (illness, extreme fatigue, pregnancy, menstrual cycles) or antibiotics (disruption of normal GI flora) are the most common triggers.

People with these conditions learn quickly what triggers it and tend to avoid those things - something about pain, bloating, and bloody diarrhea is a strong being a strong aversion to eating certain foods.

*Side effects are reported, and may or may not be truly related to the treatment. Harder to tell in the US (see comment about placebo).

dgold44 said:

I am hoping the meds work or that only part of the colon is removed

Click to expand...

Is it actually ulcerative colitis? If so, why do you say it's genetic? We don't know what the cause of UC and moreover, everyone who has it appears to be different. Crohn's has a genetic cause for a subset of cases.

I would get your sister to try some dietary intervention, and no this is not alternative voodoo.

p.s. I don't mean organic mumbo jumbo.

Tennisanity said:

Is it actually ulcerative colitis? If so, why do you say it's genetic? We don't know what the cause of UC and moreover, everyone who has it appears to be different. Crohn's has a genetic cause for a subset of cases.

I would get your sister to try some dietary intervention, and no this is not alternative voodoo.

p.s. I don't mean organic mumbo jumbo.

Click to expand...

His sister is a doctor so what would probably work best is finding papers on diet to help with UC. A big component may be stress too and both being a parent and a doctor are typically stressful.

movdqa said:

His sister is a doctor so what would probably work best is finding papers on diet to help with UC. A big component may be stress too and both being a parent and a doctor are typically stressful.

Click to expand...

It’s not diet
It’s 100 percent genetic and runs in family
No diet can fix it

dgold44 said:

It’s not diet
It’s 100 percent genetic and runs in family
No diet can fix it

Click to expand...

Ok so if its genetic, tell me the genes that are causing it. Not saying there isn't a genetic component to it, but it's very complicated and could also involve the microbiome genetics.

movdqa said:

His sister is a doctor so what would probably work best is finding papers on diet to help with UC. A big component may be stress too and both being a parent and a doctor are typically stressful.

Click to expand...

The problem is doctor's know sh1t about UC. Nor are medical doctor's the most adept at seeking out scientific research.

Best wishes to her and your family.

Has she tried medicinal marajuana?

Doctors do not receive training on dietary nutrition. It is up to patients to learn about dietary ideas to try and help.

For those with colitis, talking about dietary ideas is a touchy topic. Many try different diets but have limited success. It becomes emotional for some. Some succeed though and find diet greatly beneficial.

One of the better known writers about diet helping with treating UC is Daniel Walker. She has written several best selling books on the topic. Daniel has/had UC her self but has been able to control her UC with diet. One of her books can be seen here ~

Danielle Walker's Against All Grain: Meals Made Simple: Gluten-Free, Dairy-Free, and Paleo Recipes to Make Anytime

https://www.amazon.com/Danielle-Walkers-Against-All-Grain/dp/162860042X/ref=asap_bc?ie=UTF8

Tennisanity said:

The problem is doctor's know sh1t about UC. Nor are medical doctor's the most adept at seeking out scientific research.

Click to expand...

My manager switched doctors for this reason and has her on a non-pharma regimen that is working. So there are doctors out there that will take a nutritional approach along with herbs and other things.

I’ve seen a very few other doctors that take a nutrition and vitamin and complete testing approach for other things too.

movdqa said:

My manager switched doctors for this reason and has her on a non-pharma regimen that is working. So there are doctors out there that will take a nutritional approach along with herbs and other things.

I’ve seen a very few other doctors that take a nutrition and vitamin and complete testing approach for other things too.

Click to expand...

Yes there are some open minded ones out there. Generally speaking, I'm not opposed to standard medical care for well defined diseases with known genetic causes and tailored drugs. But UC is still a huge enigma for standard medicine, to the point where people are sometimes misdiagnosed between Crohn's and UC. It's just so complicated, but most doctors just up the regimen of drugs until they reach biologics and when they stop working, snip snip the colon out. Diet certainly plays a large role in some cases of UC and Crohn's, but again not all. So I also certainly understand the OPs suspicion of dietary intervention.

Has she been on Uceris yet? I’m sure she’s been on Remicade or Humira. Surgery eliminates it but it also eliminates your colon.

Tennisanity said:

Yes there are some open minded ones out there. Generally speaking, I'm not opposed to standard medical care for well defined diseases with known genetic causes and tailored drugs. But UC is still a huge enigma for standard medicine, to the point where people are sometimes misdiagnosed between Crohn's and UC. It's just so complicated, but most doctors just up the regimen of drugs until they reach biologics and when they stop working, snip snip the colon out. Diet certainly plays a large role in some cases of UC and Crohn's, but again not all. So I also certainly understand the OPs suspicion of dietary intervention.

Click to expand...

That happened to my manager for a long time but there is genetic testing for Crohn's now. It does make some amount of senses that diet affects the colon because it's all passing through the colon. If folks could only see what happens to food as it gets digested and goes through the colon. My manager had the problem a long time ago and then someone suggested a low-carb diet so she tried that and things were good for a long time but then her life got a lot more stressful. Her doctor has her go through cycles of herbs and some foods I think - kind of like the cycles of chemo or infusions for MS. I don't know anything about the drugs for UC or Crohn's but I think that Crohn's increases the risk of colorectal cancer.

I think that most people want to keep their original parts, even if there is somewhat more pain involved.

dgold44 said:

It’s not diet
It’s 100 percent genetic and runs in family
No diet can fix it

Click to expand...

Food is what runs through the colon so it's food that causes the irritation, inflammation and/or damage. No food, no damage. The colostomy or illeostomy eliminates the colon or part of the colon so you don't have food running through and causing problems. Many ostomy bags are clear so that you can see what the food looks like as its being processed in the case of an illeostomy and get a feel for which foods do what to your digestive system.

That something is genetic does not mean that environmental factors don't factor into what is happening.

movdqa said:

That happened to my manager for a long time but there is genetic testing for Crohn's now. It does make some amount of senses that diet affects the colon because it's all passing through the colon. If folks could only see what happens to food as it gets digested and goes through the colon. My manager had the problem a long time ago and then someone suggested a low-carb diet so she tried that and things were good for a long time but then her life got a lot more stressful. Her doctor has her go through cycles of herbs and some foods I think - kind of like the cycles of chemo or infusions for MS. I don't know anything about the drugs for UC or Crohn's but I think that Crohn's increases the risk of colorectal cancer.

I think that most people want to keep their original parts, even if there is somewhat more pain involved.

Click to expand...

Again it’s a genetic , autoimmune disorder and unless she starves herself it won’t matter
The body is basically attacking its own colon

Tennisanity said:

Ok so if its genetic, tell me the genes that are causing it. Not saying there isn't a genetic component to it, but it's very complicated and could also involve the microbiome genetics.

Click to expand...

Probably several bad genes but science cannot repair and splice new genes
It’s a very bad form of collitus

Her own white blood cells are attacking her own colon
They see the food and good gut bacteria as bad invaders

She started brand new meds yesterday

I know someone who has UC.
She went to a doctor who specialized in functional medicine to treat the cause of the problem.
It really helped.

Ulcerative Colitis is like a milder version of Crohn's, the predominate difference being the UC only affects the large intestine, and Crohn's can affect anywhere from the mouth to the rectum. UC can be cured with colectomy (remove colon) and can be attached to distal rectum for a fairly normal life, but that is a last resort. Because Crohn's can occur anywhere in the GI tract it can not be cured, but can be managed.

Diet is important and for some makes a big difference, but for many other things like stress, menstrual cycles, pregnancy, illness are the primary causes. For some it is random and others it is seasonal - worse when allergies are worse.

I never said that diet was not a factor, but it is ridiculous to make claims like - it is all the medications she is on, and good diet will fix it.

Also, I believe the OP stated that sister is doctor (be it medical or phd, idk), but I can promise you that the sister has done more research and has more experience with this than anyone else here.

Everything in moderation, learn your body. Work with your healthcare providers- and discuss alternative therapy if you are really interested. But be careful, seemingly innocuous things can be dangerous. For example, drinking to much water (water intoxification) can kill you, to much oxygen can cause problems too. The list of side effects for medications are extensive, are anything that is reported in association with the drug and may or may not be causal. For example almost every medication has risks of constipation and diarrhea.

I would recommend that with anything you try, you get a reasonable projection for how long it takes to help and be cautious. I would keep a diary (once a day for the time that it is supposed to work) so that you can see if it helps you. And are the risk/side-effects/costs worth the benefits you receive. Remember that mental is just as important as physical, in fact in the last 20 years the placebo response rate has increased from about 25% to closers to 51%.

Everything you put in your body has risk and benefits, but that is true of everything in life. Crossing the street has the benefit of getting to the other side, but you might get hit by a car, even if you look both ways- it happens everyday. I can tell you that having bloating, bloody stools, diarrhea and pain quickly teach those with UC/Crohns what they can and can't eat. Most of them self regulate their diets or know the triggers.

The fun and challenging thing about medicine is that no two humans are the same (even identical twins start to diverge from the time the embryo splits).

I am sorry to hear about your sister's suffering. I can empathize.

I got diagnosed with UC over five years ago after suffering from IBS for a decade prior to that. Thankfully my UC is only in the last six inches of the colon. I have managed to keep it mostly in remission using first-line oral mesalamine (a form of aspirin) along with high doses of curcumin/turmeric. Mesalamine by itself if not as effective. I am glad I discovered these studies while trying to figure out why UC incidence in India is low.

https://www.ncbi.nlm.nih.gov/pubmed/23076948

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4001731/

Here is a more recent study using a more bioavailable nanoparticle version of turmeric showing even better results

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5630155/

Costco curcumin along with fish oil works just fine for me. I plan on testing out the nanoparticle version soon.

I also follow a low FODMAP diet developed by researchers at Monash University to keep IBS symptoms in check.

https://www.monashfodmap.com

My main issue with keeping this chronic condition under control like my other chronic condition asthma is secondary infections. Normal maintenance is interrupted by Norovirus and other enteric infections that the kids bring in are hard on my gut and cause flares. This is similar to how the flu might degenerate into pneumonia if not properly managed, because of my asthma. I can imagine how hard it must be for your sister who has to raise three kids and also deal with patients who might all be sources of secondary infections.

What frustrates me a lot with the current medical system is how a profit motive pushes aside the ideal solutions to what are considered lifestyle diseases like UC.

Take the case of gastric ulcers before 1998. Similar diet, stress arguments and profit motives in pushing symptom alleviating therapies/drugs (this includes natural and holistic remedies) kept the real cause from being properly investigated. The sheer persistence from a guy like Barry Marshall in the face of so much resistance shone a light on the ultimate truth that most gastric ulcers are caused by h.pylori infections. All this transpired in the not so recent past. I am glad he won the Nobel.

I am hopeful that John Hermon Taylor's work is similarly recognized for Crohn's and he too wins a Nobel for his work in his lifetime. Read his seminal paper where he describes the real cause of Crohn's (and likely UC) which is Mycobacterium avium subspecies paratuberculosis (MAP) infections.

https://gutpathogens.biomedcentral.com/articles/10.1186/1757-4749-1-15

MAP is in our milk (including breast milk), meat, water and produce and hard to avoid. It is spreading through the microbiome of most of the world. If this were a disease like tuberculosis to which it is closely related to, vaccine development would be much more of a priority. But milking patients of tens of thousands of dollars a year using specially coated aspirin derivatives or immunomodulators is much more lucrative. Anyways India has a high prevelance of MAP but fairly low prevelance of UC because of (IMO) the extensive use of turmeric in Indian cooking.

Hopefully, the MAP vaccine trials are concluded and available soon so people like your sister and me would not have to suffer from this debilitating condition because the root cause is addressed.

https://clinicaltrials.gov/ct2/show/NCT03027193

You are saying it doesn't matter what you eat?

So nothing either helps or exasperates the condition?

GBplayer said:

You are saying it doesn't matter what you eat?
So nothing either helps or exasperates the condition?

Click to expand...

Mayo Clinic says new info indicates diet can aggravate but not cause ulcerative colitis.

I don't know how diet can be ruled out as one possible cause given that not everyone with the genetic risk factor develops it.

GBplayer said:

You are saying it doesn't matter what you eat?

So nothing either helps or exasperates the condition?

Click to expand...

"The segments of gross inflammation are not caused by a direct head-to-head confrontation between MAP and the immune system, as in Tuberculosis. The primary enabling cause is because MAP infection which is throughout the gut, dysregulates the immune and enteric nervous systems which makes the gut ‘leaky.’ The secondary effector cause is the perturbed neuroimmune response to entry into the gut wall of microbiota and food residues from the gut lumen."

So the MAP infection makes the gut leaky and food and microbes that shouldn't get in make it through the gut wall. Get rid of the infection and give the gut a chance to heal and you have cured the disease.

Food high in FODMAPS makes it to the lower intestine undigested and feeds the gut bacteria there will produce gas as a by-product. This aggravates an already inflamed lower intestine. It is inflamed because the immune system is attacking food and microbiota that have made it past the gut wall that should not have. So food not digested in the small intestine aggravates but is not the cause of the disease. Food that a person is sensitive to and causes an immune response on a food allergy test does not help either. Unhygienic food that introduces bad microbes (that a normal gut could tolerate to a certain extent) is a definite no-no.

High doses of turmeric control both the inflammation and the infection (turmeric is a somewhat effective antibiotic against gram-negative bacteria) but do not cure either the infection or the inflammation. The cure is getting rid of the underlying MAP infection and allowing the gut to heal. The infection is hard to get rid of fully even with strong antibiotics that work with tuberculosis and leprosy. A proper cure is an effective vaccine for humans and cattle.

If the colon is so far gone that removal is the only option even then his sister can come back strong and still regain her full athletic ability. Read Michael Mauti's story

http://www.baltimoresun.com/sports/nfl/bs-sp-mauti-20180227-story.html