Will he ever be healthy?

[RachelRR]

My husband has Crohn's Disease and we need some advice. He has a Remicade infusion every 6 weeks, but overall he is just not a healthy person. I would say he is mildly sick about 70% of the time (feeling weak, low fever, stomach bothering him) and moderately sick (high fever, in bed with stomach cramps, etc.) at least once a month for a few days.

We just moved to a new city, and I don't feel like his doctors are on top of the situation at all. They don't take blood tests; the last time my husband had a flare-up after eating too many bad foods, his gastro said he should go to the ER because it's impossible to have a flare-up from eating, and it's probably an infection caused by a compromised immune system from being on Remicade - which is ridiculous, because every single time he's had a flare-up, it has obviously been from food.

I know if we go back to him, he will just add in more drugs. I feel like the doctors only focus on their narrow-minded medical view of the situation, but there is something majorly missing in the big picture here, and I don't know how to go about figuring out the big picture and what needs to be done to help my husband be a normal, healthy person. He has resigned himself to being chronically ill, but I believe that there must be some way to restore his health (and not by further compromising his immune system).

On the other hand, my husband is not willing to do the SC diet, and I know there is a lot of quackery out there in the world of alternative medicine which we don't want to waste our time and money on. I'm feeling very stuck with his current medical care, but I don't even know where to look next!

Any advice would be greatly appreciated!

 

[ronroush7]

I wonder if he needs to switch to another biologic.

 

[If*]

Hi Rachel, hope today finds you and yours doing a little better
In your post you may have written your own advice. Food triggers are real for many. By chance instead of consuming has he tried seeing if he feels better by not ingesting things that make him feel ill?
I always have faith that we all get times to feel better. During those good times we still need to be diligent to not slack to he temptation of what we consume. I think we all try something at times (like pastries, fatty foods, etc) to see if we can be normal.
Nutrition is an important part when having a digestive illness. If he sees a dietitian, it needs to be one who is trained in ibd.
Many like to keep a food diary to see what may make them feel worse or what works. Does he take any supplements? Any labs to see if he may be deficient in any vitamins or minerals? b12, d, iron....etc

Be well, God bless.

 

[Scipio]

On the other hand, my husband is not willing to do the SC diet, and I know there is a lot of quackery out there in the world of alternative medicine which we don't want to waste our time and money on. I'm feeling very stuck with his current medical care, but I don't even know where to look next!

Where I would look next is for a better GI - one with a professional focus and serious interest in Crohn's. Many docs, even many GIs, do not like to deal with IBD because it such a difficult and frustrating disease (as well you know). But there are those who embrace the challenge and make it their life's work.

Medical schools and large hospitals, especially teaching hospitals, often have an IBD Center or IBD Clinic where you can find these docs. I suggest checking around to the medical schools and large hospitals that are within driving distance and see what is available.

 

[spiggie]

Hi Rachel, hope today finds you and yours doing a little better
In your post you may have written your own advice. Food triggers are real for many. By chance instead of consuming has he tried seeing if he feels better by not ingesting things that make him feel ill?
I always have faith that we all get times to feel better. During those good times we still need to be diligent to not slack to he temptation of what we consume. I think we all try something at times (like pastries, fatty foods, etc) to see if we can be normal.
Nutrition is an important part when having a digestive illness. If he sees a dietitian, it needs to be one who is trained in ibd.
Many like to keep a food diary to see what may make them feel worse or what works. Does he take any supplements? Any labs to see if he may be deficient in any vitamins or minerals? b12, d, iron....etc

This is all true. Diet is extremely important for IBD, as are supplements. I agree that a food diary helps while eliminating different foods to see if there is any improvement. The biggest ones to try first are gluten and dairy. Generally you want to eliminate a food for 2-3 weeks before adding it back into the diet again. I have personally found that gluten, dairy, soy, corn and sugar do not sit well with me. It's all about trial and error with this disease.

Supplements are a great addition too. I currently take a good multi vitamin (high in b vitamins, among others), turmeric, vitamin D3, probiotics, and L-glutamine (in powder form.) I've experimented with fish oil in the past, but eat fish regularly so stopped taking that. Try to figure out his triggers and go from there. It is possible to get better!! It just takes time and willingness to experiment.

 

[RachelRR]

Thank you so much for your replies!

- It is definitely true that food plays a big role, but how would I find the right professional to guide us in trying diets, adding supplements, etc.? I am nervous to do it on our own, because my husband has little patience for this and I want to make sure we get it right as quickly as possible.

- As far as finding a better doctor, our current doctor is actually the head of a gastroenterology unit that specializes in IBD and is supposed to be the top authority in this state. :confused2:
How can I find a better doctor? I don't find that online reviews are helpful.
I would like to find someone who can look at the whole picture and not just the drug treatment part.

 

[spiggie]

Go to a functional medicine doctor. They are the only medical professionals I've found that look at the body as a whole, instead of separate units. I am working with my functional medicine doctor to figure out supplements and diet, while my GI doctor (also the head of the gastroenterology unit that specializes in IBD) is who I see for procedures like colonoscopies and maintenance meds.

 

[If*]

Great advice Spiggie!
Sounds like a good direction to go.

 

[Beach]

If you are interesting in an alternative idea, but your husband isn't interested in diet experimentations, you might try and find a doctor to prescribe low dose naltrexone (LDN). LDN is a generic prescription medication found to help some with Crohns and other IBD conditions. It has few negative side effects. Most doctors do not prescribe LDN, or not off hand. You have to ask for it.

There is some testimonial information on LDN on the treatment section on the sight:

http://www.crohnsforum.com/forumdisplay.php?f=32

Best of luck to your husband.

 

[RachelRR]

Thanks for all the replies. Functional medicine sounds very interesting and exactly what I might be looking for. After some quick research though, it seems very expensive!! Is everyone going to a functional medicine practitioner paying a fortune out of pocket?

 

[spiggie]

The expense really depends on your insurance coverage and if the functional medicine doctor accepts the insurance you're on. They perform very in depth stool and blood testing, much more than any GI doctor will, which is generally out of pocket. I paid about $350 for mine. This is much less than the colonoscopy/endoscopy cost me earlier this year ($1,500!). So, it really depends on your individual situation and which doctor you choose. I will say that the testing they do gives you a MUCH clearer picture on what is going on in your gut and what you need to do in order to become healthy again. Keep us posted on what you decide!

 

[Layla]

Why don't you try a low fibre diet and see how that goes? While everyone is different, low fibre seems to be common denominator.

If you're worried about quackery another option would be to try the FODMAP elimination diet with help from a dietitian. This is based on research by the Monash university in Australia and could well make a difference.
I've tried many other diets, including the SCD and none worked for me except to stick to low fibre.

Does he know what his trigger foods are? Has he been tested for Celiac? (via biopsy) or lactose intolerance (via a hydrogen breath test NOT a hair sample or similar) Much better to get tested for those than doing trial and error especially in the case of celiac as continued gluten intake will do long term damage.

And next time he has a flare, get his GP to order the blood testing so you know what you're dealing with. I say this because the "flare" I get from eating the wrong things is not the same as a "real" flare. They may feel the same but the one from food maybe lasts a few days and the other many months.
Not that everything shows up in bloodwork but it may. You then have ammo for your GI.

BTW, Functional medicine is excluded from my insurance policy as they consider it quackery so do your own research before you commit!

Good luck with it all, he's lucky to have you!

 

[spiggie]

I agree that there are many different elimination diets to try in order to figure out his trigger foods. They are more reliable than allergy testing and less expensive (depending on what your insurance covers.)

I have personally found the functional medicine approach to make the most sense for healing the body, regardless of some insurance companies calling it "quackery". As you said RachelRR - "I would like to find someone who can look at the whole picture and not just the drug treatment part." That is exactly what they do. Their goal is to figure out the root cause of the problem and heal it. The standard medical approach is to mask the symptoms with drugs and not fix the underlying problem (which is why so many of us Crohn's sufferers still require surgery even though they are taking their meds.)

 

[teddytutu2017]

his gastro said he should go to the ER because it's impossible to have a flare-up from eating

[FONT=&quot]Well that doctor is a dill then! :ybiggrin:[/FONT][FONT=&quot]
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[FONT=&quot]Yes he can be healthy again one day. But it is a slow process that requires commitment and learning.

Sadly it IS very possible to have a flare up from eating and drinking.

Basically ALL of my flares-ups occur from eating or stress.

Or antibiotics. Which I now refuse to take antibiotics for this reason.

I suggest finding yourselves a qualified and very experienced naturopath or natural medicine doctor. [/FONT]

[FONT=&quot]Someone with experience and success in treating IBD preferably.

I was terribly unwell when I was first diagnosed. And now my health is better than everyone I know.

Nothing to do with my doctors either. I contribute my wellness to one herbalist, and three different naturopaths, that have guided me over the years.

First you need to heal the gut and bowel. Which basically means avoiding solid food for a set period and allowing the gut and bowel to take a rest. It is called an elemental diet.

Some people take a mixture called Ensure which is a processed formula liquid diet. I think the ingredients look terrible though.[/FONT]

[FONT=&quot]So I always do elemental diets with filtered water, fibreless vegetable juices, caffeine-free herbal teas, blended soups and other soothing easy to digest foods.[/FONT][FONT=&quot]
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[FONT=&quot]I normally do four weeks under naturopath guidance. But I have heard of people going for three months.
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[FONT=&quot]But if your husband is not willing to change his diet or open his mind to evidence-based alternative medicine (not quackery), then he is likely to stay stuck in the same place for years.[/FONT][FONT=&quot]
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[FONT=&quot]Hope things improve soon for you and him soon.[/FONT]
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[teddytutu2017]

Thanks for all the replies. Functional medicine sounds very interesting and exactly what I might be looking for. After some quick research though, it seems very expensive!! Is everyone going to a functional medicine practitioner paying a fortune out of pocket?

I am not sure what a "functional medicine practitioner" is. It is a term I have never heard before.

A visit to my naturopath costs $100.00 per visit. And goes for a two-hour duration.

Then I will pay for any supplements if needed; on top of that.

But I only need to see her twice a year. Once as an initial consultation, and once as a follow-up to ensure I am following her guidelines, or to fine tweak any issues that arise.

I can also contact her free of charge by email anytime I want, if I have any concerns with the regime that she has me on.

A visit to my herbalist once a year costs $175.00 per visit. And again goes for a two-hour duration. And I can also contact her by email for free advice any time.

In comparison, my gastro charges $250.00 per hour (per hour; not per visit). Last time I was there he wrote me a script for $500.00 worth of medicines. Some of which made me very sick. I cannot contact him by email. I have to make another appointment at $250.00, if I have any questions.

And my doctor charges $50.00 per visit for a measly fifteen-minute time slot. Last time I was there the appointment went a bit longer than expected and I was charged $120.00. I nearly fainted when they handed me the bill. I cannot contact him by email either, and another appointment at $50.00 is needed, if I have any questions.

Depending on what country you are in, sometimes you can get health care rebates or insurance pays, especially if low income.

I don't have private health insurance or indeed any. But I can claim certain things on Medicare in Australia.