Just diagnosed with IBS but...

[guitarjunky]

Hi guys, I haven't been diagnosed with any IBD, but I certainly have digestive issues and I'm in need of your knowledge. To introduce my case, I'm a 25 year old female, and I was diagnosed by my GI with IBS just this week after experiencing one of the most terrible flare-ups I've had since before my gallbladder removal. Thanksgiving of 2013 is when things began to go downhill for me...of course we have a tendency to over-consume that day, and I paid for it with an ER visit and a sonogram that came back positive for gallstones. I had been having episodes for close to a year, but that attack was the worst and the final straw. I lived with the colicky pain, nausea and bile vomiting until May last year, when I finally had it removed. I had lost around 20 lbs (a big deal for me, bc at the time I got sick I only weighed 125) and looked absolutely ghastly. As horrified as I was of surgery, I was ecstatic, because I thought it was going to be life-changing for me in a positive way...I would be able to eat anything again, pain free! How foolish I was. The surgeon warned me that people that have this operation typically have diarrhea for several months afterwards, so I just let it go when I realized I would be one of these people. Now, almost a year later, I still suffer from it, constantly. It interrupts me while I'm driving, working, even while I'm eating! Food seems to take as little as 15 min to pass on bad days, and I don't even see how I can be absorbing nutrients at that rate. In any case, I could tolerate the stomach cramping, and urgent bathroom trips, but more recently it has interfered with my sleeping (I'm constantly fatigued, even if I've just woken up) and I've had tension headaches almost daily since for the last 4 months. A few weeks ago is when I made the move to make a gastro appt finally; I woke up around 3 am one morning nauseas and vomiting dreaded bile, and shook and sweat violently for the next 30 min. This happened again a few days later, right after I got out of bed. I had a dr visit with my GP that same day; she sent me for blood tests (they all came back normal) and right after drawing blood I got sick again, and proceeded to throw up in their bathroom (all bile) while I was giving a urine sample. I was so dizzy and shaking so bad I had to sit in the parking lot for a while before I could drive. The doc called and said I had a UTI (I get them constantly thanks to my stomach probs) and put me on Cipro - I have never been in so much pain. I had all the physical symptoms of the flu, body aches, joint pains, tendon flare up in my left arm, the works (I have joint pain all the time, but not that bad). She told me to stop taking it, apparently I'm intolerant to Cipro. Anyway, visited the GI this week, and all he ordered was an x-ray. I was told that my large intestine is basically too large for my frame, making it take on a capital M shape (not nice and curvy), and that he thinks that means that, when I have bile reflux (bc of having GB removed) that the path of least resistance out is up...hence the throwing up bile. They've given me Questran to try and absorb the excess bile salt, so we will see how that helps. I guess I'm just wondering if anyone else who has been diagnosed with IBS has a similar story bc I'm having trouble finding such. I just want to make sure that is the problem, I don't want to find out years down the road that something else was wrong, and I could have been treating it all along. It's my understanding of post-cholesystectomy syndrome that it's a temp diagnosis for those with their GB removed until they can find the actual problem...and from everything I've read far, IBS doesn't explain the vomiting. I'm wondering about Sphincter of Oddi dysfunction or...who the hell even knows? Maybe I should get a second opinion? I was totally expecting an endoscopy or the like to be suggested bc of my symptoms...

I apologize if any of this was TMI or gross, or just seemed irrelevant, but I wanted to be thorough in case any one else has experienced anything similar.

 

[UnXmas]

A great many people get an IBS diagnosis when they actually have something else (I view IBS as the diagnosis doctors give to people with digestive problems but haven't found the real cause).

I'd advise against trying to diagnose yourself by looking up your symptoms online.

What's your relationship with your GI like? You'll need a helpful doctor who will have further tests done. It can take a while to find a good doctor, but it's often the only way to get help. You may also want to ask any doctors you see to help you more with symptom management even without a diagnosis, if your current treatments don't work well. It's far harder to treat an undiagnosed condition, but diagnosis can take a while so it's worth persisting in making requests to doctors to try and make your life easier during the diagnostic process.

 

[Abbynormal]

I was told by my GI before my colonoscopy that he was certain it was just IBS... Few test later I have crohns in my small bowel, rectum and fistulas! Hope they sort you out soon it's so frustrating to feel your being treated for the wrong condition!

 

[guitarjunky]

Thanks for replying guys, I appreciate this forum so much. I'd say you have no idea what a relief it is to have someplace like this to come discuss my issues...but I'm sure you do know! My family and bf try to be supportive, but I feel like they think I'm looking for sympathy when all I really want is an answer. On that note, they've all told me to stop googling symptoms! Lol. I've come to the realization that with digestive issues, its a pointless endeavor anyway bc the symptoms for everything seem to overlap...

That being said, this past week was my first visit to a GI ever...so we have no patient/dr relationship to speak of. When I had my GB removed I went from ER to GP to a surgeon...I now realize I should have insisted to see a GI in-between, as my issues seem to have started a long time before I was fully aware of them (I didn't have insurance until last year, so going for 'minor' stomach complaints was never an option for me). I really like the GI they sent me to, he is into alternatives for some meds like yoga, which is really supposed to help IBS...I was into that bc I've been doing yoga since before my GB surgery to relieve body aches and gastric pains. But I have to say I was a little frustrated that he didn't order any more tests. He seemed to think that bc I have no known history of Crohn's or anything else similar in my family, that doing other tests wasn't necessary...but as I told him, I've had lots of family members with digestive probs...but I also have a lot of alcoholics in my family, so it was always assumed the booze was their problem. It's certainly not mine, bc I'm incapable of drinking these days. I'm starting to think I should have insisted on some of the tests to rule out other problems...

 

[Abbynormal]

It's frustrating when they ask about peoe in your family having crohns- no one else it my family has Crohn's disease- I guess someone has to start it off! Because of no one else suffering with crohns when I first went in to A&E they assumed I had colitis after checking my appendix didn't need removing. I hope they get you some more test seduled- I had to have ultra sounds, x-rays, CT scan, MRI, colonoscopy and a pill cam before they were fully able to confirm crohns and it's location and my lovely fistula!

 

[UnXmas]

There are so many digestive conditions that are not genetic at all, so I don't think that should be a reason for assuming IBS (and as you know, even Crohn's doesn't run in the family of everyone who has it).

It wouldn't be at all unreasonable for you to ask for further tests. You don't need anything more to justify that request than the fact that you're still having problems and don't have a clear diagnosis. However, there are a few reasons you could give your doctor for why you feel you need further investigation: if your symptoms deteriorate or if you get new ones, that warrants rethinking the IBS diagnosis; you've had issues with your gallbladder and previous abdominal surgery, so you're not a straightforward IBS case, it's possible complications may have developed from your earlier surgey or that your current problems do relate to your gallbladder issues; you've tried the treatments the doctor had recommended but are still having problems. Obviously you may have to wait a little while to use this last reason, long enough to know if the Questran helps, but then you can honestly say that you've been doing yoga as well, and while that helps you with some symptoms, you have other symptoms that it just doesn't touch which makes you feel something more may be going on, or at the very least it means you need your doctor to keep trying to find more effective treatments.

Of course this assumes that you do want further tests. Sometimes diagnosis is difficult, tests may be done which come back normal, which can be very frustrating. But I think it sounds like it would be wise for you to make sure your doctor knows how you feel about the IBS diagnosis, about how your medical problems are affecting your life, and about any concerns you may have that your illness may get worse if something has been missed by the tests you've had so far.

I really hope you can get this sorted out. Are you able to make another appointment with your GI? Finding a doctor you like is a massive help, and since you share his thoughts on treatments and yoga, etc. he may well also be on the same page as you regarding further testing, once you've got it through to him that you're still worried. It can sometimes be hard to say what you meant to say in appointments; you go in with a list of questions in your mind but then get side tracked or whatever. Some people find writing down what they want to say helps, then you can just hand over the piece of paper and know that regardless of the direction the conversation goes, you will have communicated to the doctor all you want him to know.

And good for you for not googling your symptoms too much. It can help to get information for yourself, but personally I feel that if you're actually trying to self-diagnose, it's a good idea to step away from it for a while. Do post here if you want support though.

 

[Lolli]

hi guitarjunky, just reading your post, and I can identify with a lot of your symptoms and experiences, especially since my gallbaldder removal in 2008. I began seeing my gastro consultant in 2011, after 3 hospital admissions due to gastrointestinal issues.

I have had 4 colonoscopies, the latest one on 29th December 2014. I went to see my consultant yesterday for the results of this last one which surprise, surprise did not show anything "substantially abnormal" is how it was worded!

I also suffer from adhesions due to all the abdominal surgery I have had, Cesarean section, full hysterectomy, numerous surgeries due to kidney stones, including a reconstruction and reimplantation of my ureter and of course my gallbladder removal. I am currently awaiting a nerve block in my abdomen, in the area of the adhesion pain, lower right side, which is being carried out under the Chronic Neuro Pain Team, who I have recently been referred to as all the medication i take for this is not controlling it sufficiently enough for me to do anything. I have been off sick since September due to the intense pain and diarrhoea and constipation. I am on Oxycodone both tablet and liquid, pregabalin, ramipril, sertraline and omeprazole.

Anyhow, what stood out in your post was the mentioning of the bile issue. During yesterdays appointment, he mentioned about after having your gallbladder removed, and said that out of all the meds i take, the only one that can cause diarrhoea is omeprazole. He asked that I stop taking it for a week and then commence a tablet called colesevelam hydrochloride. Obviously, as soon as I got home, I wanted to read up about it, to learn exactly what it is for and what it does.

I was amazed at what i found, and I think you will be too. I have attached a link for you to look at and see what you think.

http://bile.org.uk/index.html

Feel free to pm me if you want to. Happy reading.

Lolli x

 

[guitarjunky]

Hi Lolli, my doctor did address that (though I had to do a lot of research on my own, he wasn't super informative), and he prescribed me Prevalite powder (which is cholestyramine in generic I think) and it really seems to help the D problem that I've had for the past year, which is great! In fact, I've noticed that my reflux gets horrible, and vomiting returns if I forget to take it...which kind of sucks because I hate taking medicine, it's killing me to think of taking something long term, but if it helps, oh well.

Unfortunately, it doesn't help the rest of my problems. I still have stomach cramps when I eat, no matter what I eat (even smoothies), I'm constantly bloated, and now I've started breaking out in some kind of hives (?) and itch like crazy at least two or three times a week, later in the day. I don't know if it's related to eating or not. The only major dietary changes I've made are more fiber (per the dr, I switched to whole wheat breads and pastas rather than take the expensive supplements) and I try to eat more fruits, less junk, and have a smoothie for breakfast everyday...

I am definitely thinking of giving my GI a call again. I have a feeling it's going to be a pain to get an appt with them though. I called shortly after my first visit to report a little blood with a BM (which they told me to do) and the nurse just said to call if it happened again...frustrating! But I will harass them until I get the care I need, because after doing some research I found that there is only one other GI available with my insurance plan (unless I travel 200 miles) and he works at the same practice. My friend goes to him, she doesn't seem impressed, so I think I'll stick with what I've got.

 

[guitarjunky]

Visited my GP again recently and told her about my hives/rash problem along with eating either high fiber grain filled foods and she put in a celiac blood test asap. I don't have results yet but I feel fairly certain now that gluten is the primary culprit of my issues. I'm pretty excited to start a gluten-free diet per the dr's orders, regardless of what the test results conclude...based on my food diary and symptoms we both think its at least a gluten-intolerance reaction. Anyway, I think I might mosey on to a celiac forum now, thanks for all the advice and help