So sick, my life has passed me by

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I've spent all of my 20s in sickness and my life is passing me by. I don't get to live, my health has me being nothing more than a spectator. One serious health problem has come after another.

My bowels are nearing the maximum level of sick they can get. Take crohns, subtract the blood and inflammation, mulitply the diarrhea, and other symptoms, divide the treatment options and understanding from even those in the meeical profession, and subtract any periods of remission and thats where I am.

Friends ask me "are you STILL sick?". Each time they ask that I regretfully have to tell them yes. People in my life have moved on and I dont blame them. The resulting loneliness and hopelessness is crushing to say thr least.

The dwindling list of possible treatment options grows shorter and shorter while the stack of failed treatments stack and pile up. I don't know how anyone could be expected to remain hopeful at my point in my shoes.

I generally don't talk about my health problems to my friends and acquaintances very often, because NTs aren't as good at empathy as they like to think they are, and the best people to discuss your health problems with are your doctor, and other people suffering from the same health problems.

You should try to find a support group of people who have the same health problems.

Have you tried Entyvio infusions?

They are relatively painless, and don't have that many side effects.

My mother is 82 years old with Crohn's Colitis (yes, there is such a thing!) It has worked WONDERS for her.

Hi Noca,

I have just said a prayer for you, for your healing.

While our paths have not often crossed in direct conversation here on WP, I always look forward to reading your posts.

~~ the phoenix

I am not sure if I blame anyone's reaction in particular. Medical teaches doctors to classify IBS as "no big deal" regardless of its severity or impact on the patient's life. I guess the rest of society determines their empathy based on conclusions reached by medical doctors. So if there is anyone to blame for the lack of empathy it would be doctors and those who teach them at medical school, as they dictate the rest of society's understanding of health issues and the empathy or lack thereof that results it.

Most doctors don't care, and the few that do can't do anything. Nobody really can help. Every single med and treatment option has failed so far. I only have 5 left that I am working through. One of the 5 is a round of rifaximin which I am almost done which has no effect. The other cholestyramine which only has miminal symptom relief at best and I continue to deterioate.

I just needed to vent that's all, and in that way having you guys listen helped.

I don't have crohns, I have severe IBS-D so that med would have no effect on me. I mentioned crohns as part of my analogy so that those reading my post could understand the severity of what I am going through. Otherwise reading just IBS, would cause someone to automatically think "no big deal" because that is what western medicine has taught them.

Thank you and everyone who posted in this thread.

What have you tried with supplements and diet? I'm sure you've gotten tested for parasites and such right? Often doctors don't look there believe it or not.

So sorry, Noca. While I cannot how your condition effects you, please you know you have a lot to offer. Your life has not passed you by, I know (unless your very, very elderly). Instead, consider that those who you have confided in just aren't very understanding. I do hope you can surround yourself with better friends who are supportive of managing your conditions. Be well, Noca

Sending well wishes and positive thoughts your way, Noca.

_a hug to you ((Noca))

It might not be of any help for me to say this, but I was diagnosed with IBS in my late teens, and it spontaneously resolved by the time I reached my early 20's. I discovered recently, however that I did not have IBS, but was intolerant to a food I was eating. At the time, I could not link the food to my symptoms because for whatever strange reason, they wouldn't come until a number of days after eating it, and would only resolve after a week of not eating it. I discovered this when I stumbled across said food in the market a few months ago, and decided to make a batch of it. "IBS" symptoms came roaring back after 20 years of being cured. You might want to see rheumatologist who specializes in eosinophilic esophagitis, which is a different condition in which food sensitivities cause spasms of the esophagus, but to determine what the trigger foods are, they remove all food from the diet and introduce it back one type of food at a time, and they might be able to do that with you to see if you have a food sensitivity triggering the condition.

@ beakybird

So far I've been tested for pretty much everything at this point. Supposedly post infectious IBS-D, a very severe form.

Ive tried treatment wise so far:

Dozen antidepressants including the two most studied for IBS, amitriptyline and trazodone, none of have helped my bowels in any way whatsoever

Dicetel : nothing
Peppermint tea: nothing
Apple cider vinegar: nothing
Juicing: nothing
Large doses of calcium: haven't figured out a safe way to do so, no way to monitor blood levels accurately to prevent hypercalcemia
Vitamin D: nothing for my bowels but it helps my depression
Activia yogurt: nothing
Ginger: nothing
Immodium: well doesn't work that well, causes problems of its own
L-glutamine: very slight constipating effect at huge doses, does nothing to cause any lasting results
Fishoil: nothing for my bowels though helps chronic pain from another condition
Slippery elm tea: nothing
Confery root tea: nothing
Rifaximin: have 4 days left out of 2 weeks, so far nothing
Cholestyramine: slight improvement in diarrhea at 2 sachets a day, still does nothing to solve any underlying problem
Ground flax: used to help, not much anymore
Ground psyllium: helped more than anything else though it seems to be working less and less, even tried doubling the amount I take
Gluten free: went gluten free ages ago
Low FODMAP diet: nothing
All liquid diet: keeps the severe stomach aches at bay though I bloat like I am 9 months pregnant even with low FODMAPS. Kept having to cross foods off my list as my symptoms got worse and worse. Down to just having extra calorie ensures, ground flax, ground psyllium, and ground hulled pumpkin seed

About a dozen different probiotic formulations including Culturelle and Align: nothing for my bowels but acidophilus that I take most often helps my immune system, I get sick much less frequently with colds and flus than I used to. Just bought VSL#3 and am going to try that.

Going to start making milk keifir next week as I haven't tried that yet

I'll be mixing the VSL#3, the kiefer and pureed unpasteurized sauerkraut to try and flood my bowels with massive numbers of probiotics, much more than is typically found in store bought probiotic pills or yogurt. The VSL#3 costs the most at $109 for 1 dose a day. I might work my way up to 4 doses a day if I don't see any improvement. That's basically my last treatment idea I can come up with because nothing is working.

I am sure there are other supplements and herbs that I have tried that I am forgetting, I am likely forgetting them because they didn't help.

Nearly every food has been eliminated from my diet already. There is nothing left but ensures, psyllium, flax, and pumpkin hulls

Noca, by any chance do you live in an area where your water comes from your own well? When my son was young he had horrible IBS. We tried everything we could think of and then someone suggested the water. We switched him to bottled water and his problems stopped. Some mineral in the well water seemed to be the problem. One more prescription med to suggest - Resotran. It works to resolve constipation.

I live in a city on Lake Ontario and use the city's municipal tap water. Supposed to be 3rd cleanest tap water in the country. Though one of our taps does smell of sulfur bacteria when you first run the water. I had considered that but others use the same tap. Iunno if it would affect anything or not. I tend to suspect my mulitple surgeries and prior antibiotic use along with a stomach infection I had to be the most likely cause but I guess i cant rule out tap water.

Does your son use bottled water even to brush his teeth?

I don't have constipation as a problem, its purely diarrhea, mucous, bloating, severe gut aches, undigested food in stool, fatigue, brain fog, etc. I tend to look for treatments that have a constipating effect though not exactly fond of immodium or other opioid cause they affect the entire bowel all at once causing problems for me and do nothing for my other symptoms.

There is one treatment I want to try, EnteraGam, but it appears to only be in the US, not Canada =/ Drugs usually take a few years to trickle down (well up) to Canada

Have you considered going to an endocrinologist and getting your Serotonin checked out?