When You Don’t Have IBS: How My Chronic Digestive Problems Took 3 Years to Diagnose

April is IBS Awareness Month, or as some would say: “April is the month for irritable bowels.” But thousands, if not millions of people suffer chronic digestive problems that are not only lesser-known; they’re often more difficult to diagnose and just as debilitating (if not more). Though the diseases are far from something we’d like to “celebrate” here at Blisstree, we’d like to think there’s something to be gained from even the worst symptoms and chronic disease. And so does Dori Manela, whose chronic bowel problems took three years to diagnose. In honor of anyone with IBS or otherwise, here’s Dori’s story. We hope it inspires:

On August 7, 2007, I ordered sushi for dinner. My life has never been the same since.

About six hours after my meal, I got nauseous; inconvenient timing, given the 13-hour flight to Israel I was about to board. I spent the first five hours of that turbulent flight throwing up, and about half of my trip to Israel was spent sick and in bed. Eventually, I started to feel better and figured I’d recovered.

Except that I never really did.

Once I returned home from the trip, I figured my, er, bathroom routine would go back to normal. I waited. And waited. “Normal” never came. A few weeks later, I looked down in the shower to see that my stomach had become horrifyingly distorted. Some areas were raised, others were lumpy; I had no idea what was going on. As weeks went by, I was having terrible gas pains unlike anything I’d ever known. The bloating was so extreme I had to leave work on multiple occasions to buy new, bigger pants. Oh, yeah…and I had barely gone to the bathroom at all since weeks before in August.

The next three years were filled with doctors, ER visits, medical tests, medications, missed workdays, bigger clothing, canceled plans, depression, pain, discomfort, more tests and still more medications.

Three years. That’s how long I spent in limbo, before receiving diagnosis. In the meantime, all I knew was:

  • High fiber foods were a nightmare. Salad, apples, and oatmeal all caused my abdomen to blow up so severely, I looked pregnant. I actually purchased maternity pants to accommodate my painfully growing belly.
  • Laxatives did nothing. Drinking a bottle of magnesium citrate did nothing, and even an entire colonoscopy prep produced absolutely no results – aside from feeling like death with some vomit on the side.
  • Prescription constipation meds didn’t do anything, either. And I tried them all, including medications meant for other symptoms entirely, that happened to induce diarrhea as a side effect (the abortion pill Misoprostol and a medication for gout, to name a couple).
  • CT scans of my stomach and intestines showed spasming and massive dilation but it wasn’t clear why.

My first doctor didn’t believe me. So when my colonoscopy prep didn’t work she had me come in for the procedure anyway, and afterward, she even told my mother that she was hesitant to treat my constipation because she thought my real problem was diarrhea. Why would I lie about something embarrassing with something even more embarrassing?

My second doctor was incredibly well-meaning but very far off the mark. As test after test revealed inconclusive or negative results, he began to suspect I suffered IBS. But that didn’t stop him from sending me for invasive, expensive (insurance doesn’t cover this) and humiliating pelvic floor physical therapy. The kind with anal probes. I wish I was making this up. (And I wish I’d had enough insight at the time to step back and say “this is ridiculous; enough is enough.”) My problem wasn’t with my butt muscles — of course I knew this! And later, I took a test to prove my theory (one the doctor had failed to mention), and who would’ve guessed! I never needed pelvic floor physical therapy at all.

My discomfort took over my life. At first I canceled plans with friends; then I just stopped making plans. I gained weight until I felt uncomfortable in my own body, and I even got to a point where I didn’t recognize myself in the mirror. I hated myself, and for the first time in my life, I was depressed. I spent entire weekends in bed. It felt like weights were pressing me down, so naturally, I just didn’t get up.

I was only getting worse, and in the most traumatic experience of my life, my doctor manually dis-impacted me on his examining room table as I lay there with hot tears streaming down my face – and a diagnosis of IBS.

When I switched to my third doctor, I told the new one my story. The first words out of his mouthL “You absolutely do not have IBS.”

It was a relief to hear confirmation of what I suspected all along, but that didn’t mean that either of us knew what was really wrong. All we really knew was that at some point after I ate food, the food stopped moving. We still had to figure out where — and why — the food stopped before I could receive treatment. And despite the long list of test results I’d collected by this point, none of them held the key to my diagnosis.

It took three more doctors and many more tests to get an answer. Once we had an answer, we confirmed with even more tests. Finally, I had my official diagnosis: colonic inertia.

My stomach and small intestine moved things along at a normal pace, but once it got to my colon, there was practically no movement. The theory is that when I was sick back in 2007, the virus I had might have resembled my colon. The antibodies that went to attack the virus also attacked my colon in the process, causing nerve damage. While this is a more common phenomenon in the stomach and the heart, it is certainly plausible. It’s also the best theory as to why I was fine one day and chronically ill the next.

After trying even more ineffective medications, my doctor suggested I see a colon and rectal surgeon. I was getting by on enemas and colonic hydrotherapy to move my digestion along, but I was also feeling desperate so I went to see what the surgeon had to say. There was bad news, and there was bad news: If I wanted to have a baby, there was a chance my colon could rupture. The solution? A subtotal colectomy – removing the entire colon except for the rectum.

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    • Lauralee Hensley

      I have complete empathy for this individual. It took many years to be diagnosed with the digestive problem of Achalasia. I had chest pain and back pain so bad I thought I was having heart attacks every day. I was choaking constantly. Thankfully, after aspirating thinned out mashed potato’s (about the only thing I could eat) I couldn’t get in to see my Dr., and was sent to see a Nurse practitioner instead. She knew I had aspiration pneumonia from listening to my lungs. She really listened to me and sent me for the right tests. Thankfully I was sent to a hospital out of the military system for the x-ray, which was read by the radiologist there. Actually he stopped the Barium swallow quickly after we started it, because he saw the problem. I ended up needing a Heller myotomy with a Dor Fundoplication surgery (cutting the cardiac sphincter open so food could pass from my very dilated esophagus down into my stomach). That surgery gave me good results for two years. Yet, that is not the only problem with achalasia. The spasms can and for me do each and every day happen anywhere in the digestive system they want. I ended up having allergic or severe side effects to meds they gave me to try and stop these, so they don’t give me anything. So what to do, well you just try to get through the pain, but pain keeps me from sleeping. So I walk around like a zombie from lack of sleep. Try to stay by myself when the pain is bad because I don’t want people to see me cry, or I don’t want to yell at people who have no idea about the level of pain I am almost constantly in. So anyone who have digestive problems, I say I understand and I feel for you.

    • Dori

      Lauralee – Thank you so much for your comment. Your situation sounds terrible and I am so sorry you have to go through all this. I understand your relief in finally finding someone who recognized your problem and knew how to treat it. It is unfortunate that we both still suffer now, but it is comforting to know I am not alone.

    • Sam

      Dori, you are so brave to share your story and a real inspiration. GI issues are so hard to talk about and often people feel like they are the only ones suffering. Five years ago, I went through similar symptoms for weeks. My gastroenterologist did not know what was going on and my CT scans and blood tests were normal. My symptoms were eventually attributed to a parasitic infection and I was able to get treated. The frustration of not knowing what is happening to your body can be incapacitating.

      Having met you, I would never have realized that you have been through all this given what a rockstar you are when it comes to fitness. Now you can add “warrior” to your resume also.

    • Ann

      Dear Dori,
      I’m 19 years old and a freshman in college. About 3 months ago, I started experiencing similar symptoms to those you are describing, and my life has pretty much sucked ever since. I was diagnosed with IBS, and more recently with GERD. This last diagnosis seems to be promising, but I feel your pain. Do you have any dietary suggestions for me?

      I wish you all the best, and my thoughts are with you.

      • Dori

        Hi Ann,

        I am so sorry you have to go through this when you are in your first year of college! I don’t know how I would have handled my own symptoms if they started that early; I would have felt even more lost.

        As for dietary suggestions, what works best for me is avoiding high-fiber foods. I can’t eat any raw vegetables or salad and I avoid breads and other foods that have more than a couple grams of fiber.

        You might find different things work for you though, so experiment and see how you feel. My stomach responds immediately after eating something I can’t handle.

        Best,
        Dori

    • melissa (fitnessnyc)

      Amazing. I feel the same way with Meniere’s disease. At least I know what it is, but anything you can only manage and not cure is so frustrating.

      • laurakitty

        Your comment was a long time ago, but I thought I would add a reply in case anyone else reads this- I had Meniere’s disease for years and it was really taking a toll on my ability to actively live my life, but when I gave up dairy after finding out I was allergic it completely went away. Now anytime that I by accident have a little bit of dairy (incorrect restaurant order, etc) it starts to come back. It might be worth giving up dairy for a few weeks to try it out!

    • B. Shanks

      I suggest people diagnosed with IBS try a gluten free diet for several weeks.
      They might see a wonderful change. I spent four years of misery with test after test coming up negative for the usual colon problems, but when I read a story about gluten enteropathy, I saw myself immediately. I was losing weight, had been in the hospital with ileus, etc. It took two weeks to stop the diarrhea. It took several months to calm the cramps and bloating. The illness that my doctor kept saying I was causing myself disappeared. My older daughter has now had to change to the gluten free diet as well, and my granddaughter is also starting to follow it after years of intestinal trouble.

      • Dori

        Thank you for your comment. We tried all the simpler ways of managing this early on, including eliminating gluten for a long time. It did not change anything though. My main symptoms generally come from high-fiber foods — whether they have gluten or not. Thank you!!

    • B. Shanks

      I suggest people diagnosed with IBS try a gluten free diet for several weeks.
      They might see a wonderful change. I spent four years of misery with test after test coming up negative for the usual colon problems, but when I read a story about gluten enteropathy, I saw myself immediately. I was losing weight, had been in the hospital with ileus, etc. It took two weeks to stop the diarrhea. It took several months to calm the cramps and bloating. The illness that my doctor kept saying I was causing myself disappeared. My older daughter has now had to change to the gluten free diet as well, and my granddaughter is also starting to follow it after years of intestinal trouble. (This is the first time I have visited this site, so I can’t imagine how you have a duplicate comment from me.)

    • B. Shanks

      Can’t figure how you got duplicate statements from me one day ago as I was not even at home on the 14th. I hit post comment twice, however, so delete one copy.

    • Sara

      I feel your pain..literally. I have suffered with constipation all my life which has progressively got worse. Yes, the prescription by well meaning Dr’s to eat more fiber is the worst advice ever. I used to eat a high fiber, high carbohydrate diet and felt worse and worse.
      I was actually relieved when I WAS pregnant, because I had a reason to look so bloated!
      You don’t mention if you have considered food sensitivities or tried eliminating foods that might be triggering your bodies reaction? I have finally found that by eliminating, among other things, WHEAT and all gluten containing products (very hard to do) I was able to go to the bathroom everyday! I’m also sensitive to dairy, eggs and soy. I avoid high fiber foods like beans and peanuts, even almonds are difficult for me to digest. On the occasion that I do ingest gluten or dairy products, sure enough..bloat, discomfort and constipation. Often I have felt like I have rocks and glass in my belly.
      I have found that a small amount of flax seeds in water every day, fish oil, acidophilus supplements and taking magnesium at night all help..but not as much as avoiding Gluten. It’s a very tricky diet to stick to, but worth it to have a flat stomach, more energy, clearer head and sinuses, less achy back and I also lost weight when I followed this diet, even though I was probably eating MORE than before. Websites such as mercola.com and bodyecology.com have also been extremely educational for me. Best of luck to you.

      • Dori

        Thanks, Sara! I eliminated all the foods that cause my body to react, which in my case is high-fiber foods, vegetables, fruits. Dairy doesn’t cause the same reaction but I avoid it because it isn’t good for anyone’s digestion. Gluten does not seem to bother me; I experimented with an elimination diet but it made no difference. Really, it is only fiber that causes my body to react.

    • Macy

      This is so unbelievable! No one believes me that I need a “low residue” diet. I also have to really watch eating spicy and fatty food; Only small portions work.

      Along with the worst flare-up that I’ve had over the past year, my legs hurt so much. Does anyone else with IBS have leg pain?

      Thank you so much for posting your perspective and coping mechanisms.

      • Dori

        Macy,

        I have met a few others! It sounds crazy to others because we are all brainwashed to think fiber is the greatest thing ever and the cure-all.

    • ann

      This year I am having sudden unstoppable diarrhea. I’m a teacher – I have stayed home numrous times because I am afaraid I’ll have an epidsode in class.

      I LOVE apples, almonds, salad. I am also a diabetic so I am feeling very sorry for myself realizing I probably have to give up more delicious foods.

      I am having tests done over the next few weeks. Hope the docs know what they’re doing.

      Best of luck to all of you!

    • Andrea Psoras

      Hello,

      Sushi has worms, and thus parasites. It’s not the case all the time, however sounds like that’s the condition with the bloating and other symptoms which compare to those of people battling parasites.

      Moreover parasites from sushi are a misery. good anti parasitics, even with the amount of ecoli and shigella in the unboiled milk, cheese, yogurt and the amount of live stock pharmaceuticals also in the food supply that erode and actually interfere with a person’s immune system and gut health but the effective anti parasitics are cloves by OW, wormwood extract by the same company, grapefruit seed extract by nutribiotics? There also is blackwalnut hull extract but I dont use it because I’m sensitive to high phosphorus substances, food, herbals, beverages, leavenings, etc. thinks high in phosphorus flair the candida and probably also the physiological condition that parasites like.

      and avoid yeast and soy and other legumes. minimizing that plumes the candida albicans by keeping a clean diet as well as feed lot livestock, and dairy which were administered pharma including stimulant hormones and antio-biotics both too which interfere with the colon health that minimizes candida proliforation. Although not as miserable as parasites, it too is annoying.

      • Andrea Psoras

        actually – this is a correction on my comment.

        yeast allergy aka candida albicans and parasites are commensalistic. Aside from the herbals I suggested for killing parasites including a good colon cleanse like Sonnes liquid No7 and Original Cleanse Smart by Renew Life, a diet that minimizes candida flair up is a low phosphorus diet.

        low phosphorus diet includes more dandelion tea, dandelion green, but little to no: legumes, poultry, soy, yeast, nuts, baking powder products also avoiding baking soda and things of soda in general. the antibiotics in feed lot meat will foul with colon chemistry. In general avoid processed food.

        best to eat grass fed live stock, dairy from grass fed cows, clean of pharma, also if eating chicken eggs, these too should be free of any pharma because the pharma again will foul with colon chemistry. more lacto bacilius, more propolis and other bee related products.

        boil all milk – from cows free of any pharma or organic milk and eat only cooked cheese. yogurt should be organic unless one makes their own.

        There is an excellent book by Dr. Hulda Clark ” the Cure for All Diseases”. She was an expert on parasites and related matters. She had a PhD in micro biology and was a successful and effective medical advisor however was railroaded by the intelligence apparatus because she was effective and the medical system feared and resented her.

        All of you, your medical practitioners and bigPharma are into you and your wallets, big time. it will take a little while to see the effectiveness of the anti parasitics and get traction with a diet cleanup, but it’s better than misery adn teh cost of failure and marginal outcomes by way of the mengele medical/medtec profession. that system is a volume based revenue model. the more ignorant people fall into the sytem and stay ignorant and think they should stay tied to the system, ignorantly, the more money the system makes and by playing into the ignorance of the victims.

      • Dori

        Thank you Andrea!

        I actually don’t have the infection anymore. The infection likely led to my nerve damage. Also, it is not definite that the food caused this. It is just a theory based on the timing. All great suggestions though and definitely something to think about.

    • Bonnie

      Dear Dori,

      Thank you for sharing your story. So many people are way to embarrassed to talk with others about bowel issues so they suffer in silence. For about 10 years I’ve struggled with digestion, mostly constipation. I was told I had IBS by my doctor and dairy intolerance. But with out education I did not know how to change and continued to suffer. Finally last winter things got really bad. Between the constant hours in the bathroom without results, feeling toxic all the time, bloating, joint and back pain and headaches I knew I HAD to do something.

      I was so fortunate to make friends with a lady who was a nutritionist. She suggested I keep a food journal, and try giving up things with gluten since many people who are dairy intolerant are also gluten intolerant. I started to eliminate things from my diet. Things like caffeine, gluten products, white sugar, soda, red meat and of course all dairy. This was NOT easy, but with my friends help in substituting healthy alternatives and because I immediately felt the wonderful results of being able to move my bowels without strain and pain, I kept it up. With in one week all joint and back pain was gone.

      Six months have passed. I’ve done a LOT of reading and food experimenting. I’ve gotten a dehydrator and am looking to purchase a juicer. My life is totally changed. Not only has my diet change benefited the digestion issue more than I ever hoped for, but made me feel healthier than I have felt in 10 years or more. I have less and less cravings for my “old” diet foods and less and less slip ups because whenever I eat something my body can not tolerate I really pay the price.

      As you say, it is tough sometimes to be on a “special” diet when everyone around you is eating without thinking about it. I have to always be aware and vigilant of what I eat to the point of packing my own food when I go anywhere. But I am also grateful to know that not only am I benefiting from this diet every day, but for the rest of my life. Like most people, I would like to live a long life. But I’d like it to be a long, healthy life.

      I’m finding the closer I get to a totally raw diet, the better I feel but I’m not sure I can ever go all the way there since I still love cooked grains. However, I really believe learning to eat and live in a healthy way is going to be a life long learning process. This also includes learning to listen to your body and it’s needs.

      Every day it seems more and more people are coming forward with dietary issues which means there is more awareness, education and access to better food options. I am so grateful that my stubborn body made me stop and change my life’s eating habits for left to my own devices I’d still be Queen of soda, candy and fast food.

      Now I’m not only able to keep myself as healthy and happy as possible, but I’m spreading the word and making a difference for others as well which is very rewarding. Good luck and thanks again for taking the time to share your story.

    • KATHLEEN WALKER

      This is a message to Ann who is having diarrhea and is diabetic. I am a lab tech in a doctor’s office, and I have found that there are a few people who can’t tolerate Metformin and develop extreme diarrhea from it. Please discuss this with your doctor, because I have seen people get total relief from a change in meds.

    • Wow

      Finally people who are talking my language! I do react to gluten, but I seem to have a twist at the splenic flexure. Amitiza helps me a lot. Before I found that, every day was focused on how to cope. Normal people hate to talk about digestion, as if there is a problem it must be in your head.

      • Dori

        Amitiza did nothing for me! I wish it helped. Also, I heard they took it off the market, is that correct?

    • Sarah T

      Thank you……… so much for sharing your story! I have been having issues for YEARS with bloating and constipation. I always get the same advice -”increase your fiber intake”. One time I tried psyllium husks and I can’t even tell you the level of agony I was in about 5 days after I tried it and all that fiber had bound the contents of my colon into a huge impassable ball. Then just this past week I was sick again – I had increased my fiber and protein intake in an effort to improve my diet, and again went 5 days with no bm, and again had to resort to a combination of strategies to be able to pass even just gas. Reading this haas given me some things to consider & I am so overwhelmed at the thought of trying to change my eating habits completely, but it is a relief to know that I wasn’t necessarily crazy in thinking that fiber is not the elixir that everyone says it is.

    • Nessa

      Wow, that really sucks. Sounds like you’ve had a similar experience to this girl here: http://girlgirlsileostomyblog.blogspot.com/2011_12_01_archive.html At least before her surgery.

      I recently had my colon removed and have an illeostomy now. And honestly, it’s easier to deal with than what you’re describing. Other than having to dress a little differently, it’s no big deal. I had ulcerative colitis that had gotten so bad that I hardly got out of bed for months and was in the bathroom 20-50 times a day.

      I tried all sorts of crazy diets to ease symptoms because I knew that my options at that point were crazy immune suppressant drugs or surgery. Of course, a colonoscopy showed cancer, so surgery it was. 7 weeks out from surgery, I feel better than I have in almost a year. I’m very nearly back to feeling as good as I did in remission. (I don’t remember what I felt like before the disease–it’s been almost 10 years since my diagnosis with over a year of symptoms that slowly built up before that!)

      If you do end up needing a colectomy, don’t be too afraid of it. Almost everyone comes out feeling so much better than they have in ages. And an ostomy is really not that big of a deal. And if you can get a J-pouch (I’m still deciding whether to do that or keep my bag), then you won’t even have the physical annoyance of a bag on your side.

      Nessa

    • arnold

      I know exactly how you feel. Ive had IBS for 4 years and sometimes i get so nervous about bowel movements that I have to stay at home and I cant do nothing to stop this problem. After 4 years I realized that eating oatmeal in the mornings and not eating any spicy or fast food helps a lot. But I still wonder what my life would be if I didnt have IBS and constipation.