Having an illness that can't be diagnosed is killing me and I'm going to fix it my damn self!

In My Humble Opinion
1

I want to start this topic by admitting that I have a serious diet soda addiction! I’ve always admitted it but ignored just how bad it has become and the thought of giving it up would truly be a fate worse than death! About six months ago, I finally mustered the resolve to at least determine just how much diet soda I was drinking daily. I didn’t keep track of my consumption can by can, but I would note on the calendar when I went to the store and how many 12 or 20-pack cartons of cans I purchased. Then when I ran out, I would do a simple average of the number of days it took to drink all of them divided by the number of cans I started with.

Even I was stunned by the results after doing this exercise for almost three weeks….I was drinking an average of NINE 12oz cans of Diet Coke EVERY DAY!!! That is 108 ounces or 3.2 liters of the junk every single day. And this has been going on for at least 15 years, probably longer.

Why is any of this important and why did I make myself take stock of how much I was drinking? I am an otherwise healthy 38-year-old guy, but over the last five years I have developed serious (often debilitating) gastro-intestinal problems. One gastroenterologist diagnosed it as Chrohn’s Disease in April 2012 and prescribed daily injections of a drug called Humira. Humira was actually developed to treat several types of arthritis (including rheumatoid) and somehow it was determined that it also could be used to treat Ulcerative Colitis, Crohn’s Disease and even Plaque Psoriasis (an immune-related skin condition)!?

After a week of giving myself a daily INJECTION of the stuff, I felt even worse. I ached all over, went from being shivering cold to soaking with sweat in a matter of minutes (didn’t have a fever) and I had so little energy that it was a struggle to get out of the bed to walk 15 steps to my bathroom a few times per day. Around the 10-day mark on the drug, I called it quits and went to see my Primary Care Physician (who is also an Infectious Disease Specialist and a brilliant physician in general). He affirmed my decision to stop the Humira and put a rush on the blood and urine samples he took. Two days later, he called to tell me that in 10 days, my kidney and liver function were substantially reduced and the only possible cause was the drug! Thankfully, last month he ran the full panel of labs again and was very happy to inform that both my liver and kidney function were perfect. How my liver survived my 20s and early 30s without permanent damage is a mystery and miracle in itself. He jokes that my liver is made out of Kevlar (the material used to make bullet-proof vests)! =)

So the diagnosis of Chrohn’s Disease was refuted by empirical evidence, but I almost had to die (or at least have a liver transplant and go on dialysis) to learn that I was misdiagnosed. Thanks so much Dr. Fucktard for that fun little experience.

Over the last two years, I have had a colonoscopy, endoscopy, ultrasound of my entire lower abdominal area, x-rays of my entire GI tract after a night of chugging the Barium Swallow solution and two CT-scans of my abdomen including one with contrast dye injecting in my blood stream. After three different gastroenterologists had put me through every test that could possibly lead to a diagnosis of my GI disease, I went to see a colo-rectal surgeon for a worst-case-scenario diagnosis. I was terrified that he would determine part of my intestines had to be surgically removed and I would spend months recovering with a colostomy bag full of shit clipped onto my side! Or that he would need to open me up and perform exploratory surgery to search for the cause of my sickness and I would be gutted like a fish.

Instead, he gave me a large capsule with 27 tiny pellets inside and a cup of water to wash it down. He wanted me to have a Colonic Transit Study and that was the first step. The 27 pellets are actually markets that show up on X-ray. After swallowing the capsule, I had to have an abdominal X-ray at the 1-day, 3-day and 5-day mark. The results would tell him how slowly my gut was functioning and then he could pursue other tests to determine a diagnosis. After 1-day, less than 10 of the markers were left in my gut and at the 3-day mark, not a single one remained. His exact words were, “I’m sorry, but I have nothing to offer you because your system is capable of functioning normally. And that is GREAT news!” I also commented that two friends had referred me to him and that he had a very friendly bedside manner. He responded by saying, “That’s because I’m the best ASS-doctor in town!” =)

So, I’ve had every test known to man and they all show that I have nothing with my gut!? Most people would be thrilled by that kind of news, but the problem remains that I DEFINITELY have something causing agonizing pain in my lower intestine all the way to the upper part of my colon on a semi-regular basis!!! KNOWING that there is something quite serious going on inside your body and being tested over and over again only to be told that the tests show nothing wrong at all is maddening! At present, my gastroenterologist feels almost certain that I have some as-yet-unnamed form of Inflammatory Bowel Disease. He has seen me in agony and also saw that even when x-rayed or scanned while I’m hurting the worst; the test results still look perfectly fine. He has also diagnosed me as having IBS-C (Irritable Bowel Syndrome with Constipation) and I’m taking a drug that was just released in early 2013 just for IBS-C patients. It helps to ease or even eliminate the pain and helps to keep things flowing, so to speak. But it often keeps them flowing very quickly and very often all night long. But for at least four years prior to starting this medication, I went 3-4 days between bowel movements and sometimes as long as six days without a BM! Talk about misery and agony……

I have struggled with moderate anxiety and depression all of my adult life, but this mystery condition has caused my depression to worsen and it rarely goes away, even on multiple SSRI and SNRI drugs in conjunction with Valium. It has worn me down and pretty much crushed my spirit, not to sound so pathetic, but that’s what has happened.

Now that I’ve exhausted the medical options trying to fix myself, I finally came to conclusion that the only person who is ever going to ‘fix me’ is ME! And the only way I will do that is by changing my habits and behaviors, learning healthier ones and giving up things that I never thought I could or would! It will suck, it won’t be fun and I will fail sometimes! I will be tempted to throw in the towel and give up at times but the only way I will ever get my quality of life back is to keep on trying and trying! =)

I have consumed less than 16oz (two cans) of Diet Coke since November 9th (19 days ago)!!! I have had one organic, all-natural Ginger Ale each day to help curb the craving for something fizzy, but it has Organic Cane Sugar instead of Aspartame, no caramel or any other type of coloring, only natural, organic flavoring and lots of real ginger! Even with 140 calories, it is much healthier for me than Diet Coke which contains one type of poison on top of another. Have I noticed a difference? Yes, I find that I want to rip doors off of hinges rather than open them and fantasize about punching people in the throat as they’re talking to me and my Mom, both sisters and my youngest brother and one of my cousins have all called me a “BITCH” every time we speak (I’m a 38yr old man)….but if I can kick my Diet Coke habit, I can give up ANYTHING! I’ll give up dairy, gluten, sugar, caffeine……Hell, I’ll even give up my Valium (or my ‘calmatives’ as I call them) and finally see if sobriety is really as horrible as it sounds!!!

At some point, I will find whatever thing or things that are hurting my body and maybe, just maybe, I will finally remember what it feels like to feel good again??? My faith is very weak, but I’m pushing thru this with sheer will power and firm resolve and old-fashioned grit (hence the bitchiness)!

BTW, I am drinking a lot more water than I ever have before, but I also drink at least a half-gallon of iced tea daily. I only use Stevia (or raw, organic sugar) to sweeten anything. I have officially eliminated artificial sweeteners and HFCS from my diet forever!

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You sure were drinking a lot of caffeine, giving that up can be a bitch although you still get plenty from the tea.

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It sound to me like you have kicked your diet coke “habit”, but I miss the part where you explain how this has helped you (unless you count fantasizing about punching people an improvement).

I only read through that stuff once, but I didn’t see what is kinda a glaring omission - how much fiber do you eat every day? In grams.

That sounds like a lot of diet coke - actually that sound like a lot to drink PERIOD.

I don’t mean to be a downer, but organic sugar isn’t any better for you than regular sugar. All of the hysteria over HFCS, non-organic foods, dairy, and gluten has very little science backing it up (except for the last two if you are intolerant).

FWIW - there is a very high correlation between fiber/digestive stuff and depression. That’s not to say fixing one will correct the other, but just a tidbit that might not be well known to some. Why do you think you have an addiction to diet coke? Have you had withdrawl symptoms (or is that the wanting to punch people thing).

4

My husband did have diverticulitis, with a bowel perforation, colostomy, reversal attempt, ileostomy and finally everything was resected. The whole process from colostomy to plumbing restored was almost 4 years.

The doctors say that diverticulitis is just “one of those things” and that there was nothing he did to cause it or aggravate it, but I’ve always suspected his 3-4 liters of Pepsi or Diet Pepsi a day did not help his GI tract one bit. It certainly didn’t help his teeth, which all rotted and broke off before he turned 58.

Since his surgeries, he’s weaned off the Diet Pepsi and on to water flavor drops in seltzer, but he’s now finding that the bubbles bother his belly, so he’s more often flavoring plain water. I hope he will someday move to just plain unflavored water, but if I get to pick flavored water or smoking for him to quit, it’s not going to be the water.

Bottom line: good for you. I don’t necessarily think caramel color and HFCS are poison, but that much acid can’t be good for a person, it just can’t. And I agree with DataX: maybe it’s time to look at your fiber, both soluble (“prebiotic”) and insoluble, and maybe a decent probiotic, like VSL #3. That shit heals actual ulcerative colitis, it’s got enough buggers to straighten out your bowel flora.

5

If you must have fizzy, get a carbonator. You can fizzy up all sorts of things without the extra chemicals.

6

My first thought with random “tummy trouble” is celiac disease - pardon if I missed you mentioning that. If you want to be tested, my best recollection is that you cannot be on
a gluten-free diet during the test, else they won’t see the symptoms. I used to work for a doctor who was diagnosed with it, as was his daughter.

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I’m confused by your rendition. When going through all that diagnosis and torment it didn’t occur to you or your doctors that drinking half a case of an acidic, carbonated, sodium laden fluid daily for over 15 years could be aggravating your condition? Or did you not disclose this to them as meaningful?

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My husband has had terrible problems somewhere in his gut and his gastroenterologist suggested he try eliminating FODMAPs - (fermentable ogio-di-somethings and polyoils) - it’s an elimination diet and then you try adding things back in one by one and see what bothers you. And corn DOES seem to be an issue, so he’s feeling a lot better without corn syrup and other corn derivatives. Not because corn syrup is worse than sugar for most people but because it seems to specifically be a problem for him. So you might want to look into that diet - it’s from a university in Australia. No stone fruit, no dairy, no wheat - it’s tough but we’ve been able to add some things back in like onions, garlic, and mushrooms.

9

Any problems with vision or headaches? My daughter has the same gastro problems. Been to multiple DRs, multiple colonoscopies (each Dr says the last one wasn’t thorough enough) and multiple diagnoses.

Then she started getting tunnel vision and dissiness. Turns out thing called a Psuedo-tumor which is intercranial pressure on the brain. among other things this can also cause “stomach migraines” that can mimic the symptoms you mention.

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Instead of soda, try normal carbonated water like http://www.lacroixwater.com/. You can get it plain or with flavors. It has no sweeteners, but you won’t miss them. It’s pretty satisfying and a great way to kick the soda habit.

You can go dairy-free pretty easily and see how that feels. Going gluten-free is harder since gluten is hidden in so many things. Gluten is found in food starch, which is added to many other products.

11

I wish you the best and sympathize with your frustration at not knowing.

My wife has had three serious episodes of unidentifiable gastric distress that were enough to cause her to not be able to eat for very long stretches of time.
The last two times she was hospitalized and spent six months bedridden being fed intravenously. The last time some people didn’t think she would make it.

She did make it though, and is almost at her normal weight. It was a year ago (the week of Thanksgiving) that her last episode began.
She is doing her best to live a totally gluten-free and soy-free life, with no caffeine either. It is not easy.

It’s a bitch to have a problem like this and never get satisfaction from dozens of specialists and tests.

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Like filmore says, the LaCroix is pretty good. I use it to greatly reduce my beer and soda (and juice and milk) intake. I don’t have the answer for your condition, but if you’re looking for something harmless and fizzy to drink, LaCroix is good.

13

I totally sympathize. I’ve been through almost exactly what you have with the stabbing abdominal pains, etc. I went through the endless tests, scans, scopes, multiple doctors and GI specialists and ended up with a diagnosis of IBS-D. Unfortunately, it seems IBS is pretty much just a catchall diagnosis of last resort after they’ve eliminated the really scary stuff.

He did say that he had a colonoscopy. The GI doctor would have seen signs of celiac if they’d been there and eliminated any doubt by doing a biopsy.

For my part, and confirming what others have said, fibre is critical. Eat lots of fruits, vegetables and whole grains. If necessary, supplement that with Metamucil. That, combined with probiotics and a low-fat diet have helped ease my symptoms considerably.

I don’t know if that will help your specific issues since IBS symptoms and relief seems to be so idiosyncratic but eating a healthier diet can only be a good thing in the long run.

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I’m so sorry for your problem, I knew someone with the same issues. She drank Pepsi - Pepsi! - by the glass, all day, every day, gulping it down like a thirsty horse offered a bucket of water. In a restaurant, she’d order a big glass of Pepsi, chug it down, and have a couple of refills. I simply don’t get it, but that’s how she rolled. She was always complaining about how messed up her stomach was. She moved away and I haven’t been in touch with her, now I wonder if that was part of her problem. (My own husband drank Diet Coke, 2 liters, every day of his life. This last year, he got turned on to Polar orange vanilla seltzer, with just a touch of Diet Coke.) I hope you find something that will help you, good luck.

15

Celiac affects the lining of the small intestine, not the large. Won’t show up on a colonoscopy. Need an upper endoscopy, but usually only after several blood tests. Ferret Herder is right though - get tested *before *you try a gluten free diet. Otherwise, you have to go back on gluten for a minimum of 12 weeks before they can test you.

16

Sorry, you’re right, endoscopy. My point still stands, though, since the OP mentions having had one of those, too. And if he’s had the scopes then he’s probably had at least a half-dozen blood tests, as well. Of course, I admit I’m making assumptions based on my own experiences.

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Just making sure. Some docs don’t look for that.

18

At the risk of being too blunt, your post boils down to, “I have a history of serious, not-fully-treated substance abuse problems and a toxic family, and I don’t feel good. Should I change my diet?” Sure, maybe – but why not start with the obvious?

You’re suffering from anxiety, and you’re drinking a lot of caffeine, which is known to cause anxiety. You’re suffering from constipation and depression, and you’re taking an unspecified amount of valium, which is known to cause constipation, and which can worsen depression.

Since you know there’s nothing wrong with your gut, I think your best bet for feeling better is working on your head. Talk to your shrink, lay out how much caffeine and Valium you’re taking, and tell him or her about the anxiety and the GI problems. Ask for help in cutting back or even quitting. You’ve done really well for yourself in kicking whatever it was that almost killed you in years past; now there’s just a last few steps to take.

Also, have you ever been screened for bipolar disorder? You mention depression, but your writing here hints a bit at mania as well.

Get some therapy to help you develop tools for interacting with your family in a way that doesn’t drain you. It wouldn’t surprise me if you’ve been self-medicating for much of your life to deal with whatever’s going on at home.

Try to stay patient. Best wishes and good luck.

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First of all, thank you for being blunt. I respect and apprecate people who are direct and just say what they mean. Blunt comments (usually things I already know but try not to think or do anything about) sometimes piss me off but getting pissed off was my reaction to pretty much everything for the first 25+ years of my life. Once I had time alone to calm down and think about whatever was said that pissed me off, it was almost always 100% true. Then on top of everything else, I had to apolgize for my intial reaction and acknowledge that the person who said it was actually right. I am proud to say that I’ve learned to bite my tongue and not show emotion long enough to think about what they’ve said and whether getting pissed off is an appropriate response…if so, then I verbally eviscerate them! :slight_smile:

Based on the information you have (the info that I’ve shared as well as my often-hyperactive writing style), I can understand why you might think I am bipolar, also known as manic depession. You are not the first person to bring up the bipolar topic. Just to make sure I wasn’t in denial about it, I have actually discussed bipolar vs. other types of depression with a few therapists and all have confirmed that I do not present as being bipolar or manic depressive. My condition has been diagnosed by multiple experts as Major Depressive Disorder (sometimes called unipolar depression).

Any manic-like attributes of my personality are courtesy of Attention Deficit Disorder, Inattentive subtype. I take 90mg of Adderall daily for it.

My depression issues cause very irregular sleepiing patterns and that is compounded by the fact that I have untreated Obstructive Sleep Apnea. I am simiply not able to use a CPAP machine and my doctors have even conceded to that fact after more watching my physical reaction to the device over several different 4-7 night periods in the sleep center. I spent a total of 39 freakin’ nights in that place in 2010 alone!

The only thing that can do is throw more drugs at me! I take 250mg of Nuvigil daily which is a psycho-stmulant (it doesn’t make me feel physically jittery or ‘speedy’ but puts my brain into hyperdrive and gives me amazing mental clarity. It also staves off EDS (excessive daytime sleepiness) which is one of the main symptoms of untreated OSA. They originally tested the drug’s predecessor, Provigil, on a group of fighter pilots involved in taking out the Taliban in Afghanistan. They took 150mpg every 12 hours and after 72 hours without sleep, they were still 92-95% acute in tests of their reflexes, vision tests, mental judgement and decision making and overall flight skills.

Sometimes when I get on a roll where I my body and brain both seem to be working with me (or at least not against me), sometimes I will stay up for 48 hours or longer and enjoy being productive and content (as close to happiness as I’ve ever experienced).

My depression and anxiety are rooted in a condition called Avoidant Personality Disorder (AvPD). The moment I read about AvPD 15 years ago, I diagnosed myself becasue the symptoms WERE the story of my life! I’ve had that diagnosis confirmed by two shrinks who were both very confident that it was 100% accurate. This is an over-simplified explanation, but think of AvPD as exteremely poor self-esteem and overwhelming fear of rejection. I have MAJOR trust issues and I never allow myself to seem vulnerable or needy. The only person I’ve ever trusted 100% is myself.

Do I take a lot of very strong precription drugs? Yes, I do. Could all of those meds be the source of my GI problems? It is possible, but during some of the worst ‘episodes’ with my gut, I’ve spent 7-10 days in bed and didn’t take a single pill other than my Paxil CR each day. After 10 days without any other drugs in my body, I still felt like I was dying and in no way felt better. So I don’t think the meds themselves are the problem.

The reason I take all of those meds IS the problem, I sincerely bellieve. And the pills don’t fix those issues, they just keep me sane in my otherwise insane family and dailyl life. But if I truly want to make my life better and hopefully reclaim some degree of mental and physical health, the only way is to start shoveling thru the shit with a therapist and deal with it!!!

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The effects of drugs in the body WRT causing physical side effects do not go away just because you have stopped taking them for a few days or weeks or months in some cases. The effects of the physical damage they did persists.

You are taking enough powerful pharmaceuticals to fell an elephant and until recently have been drinking half a case of diet soda a day. And… just so I understand re your digestive issues… all these tests through all these doctors did not suggest that the massive pharma drug intake and soda consumption habit could be aggravating your stomach pain issues?

I ask because in your OP I see zero mention by you of any doctor commenting on either of these issues as potential problem areas. If I went to a GI doc and told him that I was washing down a medicine chest of powerful psychoactive drugs with a few gallons of diet soda day in day out you’d think that’s where he’d go first re telling you to modify your diet and drug intake. I see no mention of this by you in your detailed listing of the procedures you went through.