How did your IBS get diagnosed?
I'm 33. Ive been struggling for years but have been having pain the past 2 years in my left abdomen. I've had cat scans, colonsocopies, endoscopies, ultrasounds,and seen gall bladder surgeons, GI doctors and noone seems to find out what's wrong with me. My blood work all comes back normal but every symptom i search comes back to having IBS. Ive mentioned it to doctors and they usually say "you would know by now if you had it" or it would be hereditary" and I am so tired of being miserable. I'm nauseous, go through bouts of diarrhea and constipation and severe left side abdominal pain. It comes and goes and can last for days to weeks sometimes. If I take probiotics it seems like it makes my stomach more upset and I have more pain. If I take pepto bismol it gives me immediate relief but then I get constipated. I work out everyday for atleast 30 minutes and drink only one coffee in the am and water the rest of the day. I take citrucel and Metamucil to keep regular but it sometimes helps and sometimes doesn't. I have spent thousands of dollars and been unable to get any answers and im just frustrated and tired if having a poor quality of life and it affecting my time with my family. How do I get a doctor to diagnose me with ibs or find some help? Any advice is much appreciated!
I must admit, I don't get what the doctors say to you. They gave you all those tests and found no clinical things wrong but didn't say you may likely have IBS? Did they do a biopsy for microscopic colitis during your colonoscopy? MC often gets missed as it can only be seen via a microscope from a biopsy sample. Another thing that can get missed is bile acid malapsorbtion. Also, did your blood test negative for celiac? Did they run those three tests?
I don't know about IBS always being hereditary either. Neither of my parents had it, or my grandparents on both sides, or my aunts. That was the real 'old days' as my grandparents were born in the 1890s, but I would surely have been told if any of them had bowel problems, as I heard about everything else they had wrong.
So I think your doctor saying "You'd know about it if you had it" (IBS) is b/s. They ought to be capable of giving you an IBS diagnosis after eliminating everything else it could be. Then they ought to be capable of giving you some support and medical help, referral to a dietitian, etc etc, and not shirk that duty to you. I am horrified to hear this has cost you thousands of dollars with no answer in sight! They need shaking up in a tin can! I think they are hanging you on and on with no proper strategy if I am honest.
Please forgive me for getting a bit annoyed about the way you are being treated. What that doctor said just got to me.
Have you tried the low FODMAP diet? And/or found any foods that disagree with you and you can elminate (for now at least) That might help relieve symptoms and make things a bit more controllable at least.
I'm so sorry that you've been suffering from this and haven't gotten any answers. I feel you - I barely got a diagnosis either after doing all the tests. they mentioned IBS but more like "well I guess it's just IBS so it's all in your head really", which was very frustrating.
I really recommend keeping a food journal like you have planned and also trying to adjust your diet. The FODMAP diet (https://irritablebowelsyndrome.net/ibs-diet) is a great place to start, although you might find that it doesn't work for you 100%.
As for gluten, you can be gluten 'intolerant' without having Celiac (I am!) - I'm not sure why or how but I get terrible symptoms from gluten and feel SO much better without it. If you feel better without gluten, you don't need a test to confirm that... at least that's what I tell myself.
Below are some articles that might help you on your journey:
https://irritablebowelsyndrome.net/living/fodmaps-trigger-ibs-symptoms
https://irritablebowelsyndrome.net/living/missing-treatment
https://irritablebowelsyndrome.net/living/hope
I really hope that this helps!
Wishing you all the best,
Karina (team member)I am not a doctor- but when it comes to inflammatory cells, that's not IBS, that's Crohn's or colitis. Crohn's is difficult to diagnose. And it's on a spectrum- some people are mild, some are moderate, some are severe. You could be developing it. Do you get mouth sores? The lining of your mouth is very similar to the lining in your intestines. I have had numerous colonoscopies too, that came up negative- but my rheumatologist told me that there's still a lot they don't know about it. One gastroenterologist told me "If it goes away, it's IBS; if it doesn't go away, it's Crohn's." Because they found inflammatory cells, you may want to consider consulting a rheumatologist. I was prescribed Plaquenil by my rheumatologist. My diarrhea got much better. That's when he said "If your diarrhea got much better, then you have Crohn's. no matter what any other doctor told you, because it only works if you have an autoimmune disease." Many doctors also think that IBS is just mild Crohn's. It is very common to struggle for several years without a diagnosis. Don't give up, just keep at it until you get a diagnosis.
Hello, and I hope you don't feel as bad today?
Microscopic colitis goes under the radar during a colonoscopy. It literally can't be seen except under a microscope. All looks well. Only a biopsy sample can reveal it.
Healthy food. It sounds great, but 'healthy food' has been one of my problems with IBS-D. I can eat some of them and be fine, but can have a bad time after eating certain super healthy foods. I had watercress, one portion, steamed (not even raw!) the other day, and it did not suit my gut. I keep trying with smaller amounts. Most fruits won't work, unless peeled, and even then, some won't. I can now manage 18 vegetables but at the beginning there were only about 4 that didn't cause problems. There are still many that do not suit me.
I know we are all different and you must find your own way, but personally I had to cut out a heck of a lot of really healthy foods just to get by day to day without flares.
I don't like that really, because I ate so healthy before all this. I ate high fibre, and a huge range of fruits and vegetables, and was fine on that for about 40 years!The more I kept trying to 'eat healthy' the less I improved.
But now if I want a quiet tummy, I have to aim for a lower fibre intake. Then, I will actually feel well the following day. Yes, it's completely upside down from the usual food health guidance. I do take a multivitamin/mineral tablet and a B complex daily, which I know has supported me through times when my diet was a lot more restricted than it is now..
But there are some good healthy choices on the low Fodmap diet. Even so, you may find some suit and some don't, as I do. If you have a dietician working with you it is much better. Otherwise you have to do the work: the elimination phase, and the gradual re-introduction phase. I did it myself.
I found I was OK with gluten too, and am OK with butter daily, so likely not lactose intolerant though I don't use milk products and cheese upsets me if I have too much.
Thank you for this post!! I have lots of digestive tract problems, and severe pain on my left side. Drs and sites all say ... more fiber, more water. I drink A LOT of water and still feel dehydrated. Also what rang with me on your comment was the fiber. I've tried it in all kinds of forms, and end up being sooooo miserable when I do 🙁 Just kind of a relief to not think I'm crazy or making it up.
A few weeks ago I started using pure Aloe Vera juice. I still have left pain, but as far a the digestive issues, I truly think its helped me ( a lot more than fiber and water anyway, lol). Just thought I'd throw that out there in case you wanted to give it a try ..... good luck and hope you feel better.Yes, you are definitely not alone if you have IBS d and you struggle with fibre. I hear soluble fibre is OK but the insoluble form is the worst culprit. But in all the foods I eat it's impossible to find a fruit or veggie, or other foods with just soluble without the other kind as well in there.
Well, I thought about trying Aloe Vera juice, as it's very healing. But then I heard my aunt say it got rid of her constipation so I thought -uh-oh (for my IBS d)
Then I read up on it and found it's a bit laxative.
But...it might be just the thing if there's inflammation going on in the gut. It might help to soothe and heal that.
Apparently I don't have inflammation though.
Yes, I did try Camembert. The result wasn't wonderful. Gouda wasn't so bad, but again I wasn't sure. I also tried Cheddar because it's one of my favourites. I was okay with a piece about 1/2 inch by 2 inches with my food at dinner. So I tried it again the next evening and was fine again. But the 4th time I tried it, I got an upset gut the following day and it was unpleasant (toilet 9 times in 24 hours!)
I seemed to be okay with Cheshire cheese, which is a very mild crumbly semi-hard white cheese. It's so tasty. If thare had to be one cheese that I think (not sure) may be okay for me it would be that. But I am quite wary of eating any cheese after the Cheddar flare-up! I do love it too. I don't like the taste of goats milk cheese though.But butter....there seems to be no problem at all, and I can eat it every day, and as much as I want with never any ill effects, thank goodness.
I don't shun milk because of any bad effects. I have no idea if I'd get that or not. I just seriously 'went off milky things' about 40 ish years ago, and can't enjoy anything milky ever since for some reason so haven't eaten yogurt, cream, milk puddings, drunk fresh milk or any drink with milk since. Though occasionally in the past I had ice cream.
The only two dairy products I ever ate since then were butter and cheese.
Yes, every task in life when I lived in the mountains involved hard work of one kind or another but I didn't mind. I loved it.
I am sorry that from what sounds like quite a young age, your gut was not great. It must have been so difficult at sleepover parties with your friends. Did you know what it was, then? Or were you confused by it all?No, I can't see anything I would have done differently because my gut was pretty healthy all my life until 2018, except maybe have a bit more gratitude and be aware of blessings. I never used to think about how my gut worked. It was just there, just did the job, I never gave it a second thought. I ate healthy food all my life too, and even moreso since the 1980s. So there was nothing I could really do differently.
It sounds like you have no regrets then, that's so great! Maybe it's best that you didn't think about your gut for so long. After all, it probably wouldn't have helped had you known that you would get IBS one day?
I wish I could say the same thing... I always wonder if I would have the same problems had I eaten less processed food, dealt with my anxiety early on or even if I hadn't gone on birth control at 16. I guess I'll never know.
Since I had digestive symptoms since I can remember (my mom tells me that I used to throw up every day before kindergarten), I never really thought about it that much. It was just an annoyance, like my curly hair. It was only in my 20s, when my actual IBS-D started and I couldn't function anymore, that I actually began to realize that this wasn't normal. I just keep wondering why my parents never took me to a doctor.
Karina (team member)
After of years of pain when I went to the bathroom I ended up in ambulance 🚑 go to ER hospital and was there for over a week with diverticulitis and I was diagnosed with IBS/C
