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Irritable Bowel Syndrome (IBS) Message Board

Is it just IBS?

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Old 01-16-2017, 02:25 PM   #1
Join Date: Jan 2017
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Shelley2020 HB User
Is it just IBS?

Long story ahead,

Back in March 2016, I started having major digestive issues. At first it was thought to be the stomach bug going around my area. That made sense since I'd been sitting next to our stage manager a few days prior, who was sick. (Rehearsal must go on, she did her best to avoid spreading it to me). Then, appendicitis. Then they discovered I was constipated. THey then wondered about lactose intolerance and checked my lactase levels I believe. This was over two ER visits.
I followed up with my general practitioner who mentioned the possibility of IBS or some type of irritable bowel situation given my history. At this point I was taking miralax and colase. I was told to stop taking the colase and stay on the Miralax. At this point I'd gone from 108 pounds to 104 pounds over the next month.
Fast forward to my first semester in college and things started to get worse. I had accidentally eaten some dairy and started to have a similar pain and the university health clinic was closed. I could barely move, it was so bad. It was in a C-shape starting at my rib cage (around my stomach) over to the right side and then down into my pelvis. Cue another ER visit, cue another constipation diagnosis. Colase and miralax and Zofran. Then, came the burning under my rib cage on the center over to the left side. After four days of barely being able to eat and the pain getting worse, I was told to go to the ER. (I'd been referred to a GI doc at this point and had an appointment scheduled January 2017). They told me I was no longer constipated and could go down to just Miralax once a day. They also said I had gastritis and put me on pepcid.
My GI doc was then moved up to that Friday (this was Sunday) and I was scheduled to see a physician's assistant (PA). She recommended a flexible sigmoidoscopy (herein called flex sig) to check out the bright red flakes in my stools. She also changed me to Prilosec. Continue to miralax. Refill zofran (still intense nausea) and start citrucel. Well, the fact that it was orange-flavored made me more nauseated so I take the tablets instead.
I scheduled the flex sig and called my parents. I go to college in New York and we decided to do the flex sig back home since the original date was for when I'd be home over winter recess. I saw that doctor (he's a colo-rectal doctor) and he mentioned IBS-C, pretty much positive that was the issue and recommended a probiotic (specifically Align) and agreed to do the flex sig.
Cue severe nausea and cramps with my next menstrual cycle. (I'm now on birth control to help).
The flex sig was normal and they did take some biopsies of a spot of irritation that came back normal.
At my most recent appointment with the PA up by my college and she put me on Linzess since I wasn't having a lot of luck with the Miralax. I strain a lot and spend a lot of time in the bathroom trying to go with no avail. I tried the whole "stool under your legs" thing and it didn't make a difference. Hence the Linzess. She also recommended "analrectal manometry" and that is scheduled for February
So, I've been on that for a week now and am having extremely formed stools still. I was told it'd be liquid. I take it at 7:00, eat at 7:30, and sometimes have a bowel movement with an hour but often its by around 12:00pm. (It's 4:15 now and I've had the urge to go three times with no luck today)
My dad and his mom and his grandma all have a hiatal hernia and it's genetic, so we are wondering if that could be part of the continuing stomach pain. I've been on a Low-FODMAP diet since mid-October and the list of things that trigger a reaction is making things difficult at this point. My weight did go down to 95 lbs when I was having more burning under my ribs to everything I ate. That now only happens every once in a while but still occurs. I'm holding 100lbs and am 5'4" so my doctors aren't totally content with that. My appetite is nonexistant most days and fleeting on good days. So, I'm just wondering if there's something more going on or it's not IBS and is something else or what. I will happily answer any more questions but just wanted to know if you guys have any further ideas.
I should mention any NSAIDs give me severe stomach pain as well. I do have asthma and pretty bad allergies so I'm on a pretty potent antihistamine for that.

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Old 03-07-2017, 06:07 PM   #2
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Re: Is it just IBS?

I want to preface this with: I am not a doctor. I am someone who went through the ringer with digestive issues (diarrhea, abdominal pain, and vomiting) and is now running through all the IBS treatments trying to hit on something that works.

What you describe COULD be IBS or it could be something else (I know I sound like the doctors right). Just remember that "just IBS" is a "just" at all. It is really hard and it isn't "all in your head". It can be very debilitating and very hard to treat.

On a positive note your sigmoidoscopy came back normal... which rules out a lot of scary stuff! If I were you I would keep the anal manometery visit. This measures your ability to both keep stuff and and force it out. It can't really hurt to have it checked out (although for me it was a little embarrassing). I would also push for an upper scope and if that is normal a colonoscopy. The sigmoidscopy is a very short tube. The colonoscopy is much longer. I would also push for random biopsies just to be certain. Your doctor may say no to the biopsies and he/she knows a lot more than me.... so go with what they say, but push for the colonoscopy itself. The prep alone may help to clean you out and get a fresh start on things (though it can be brutal to go through). Given your pain can be higher and lower it is hard to pick whether the upper or lower scope is more important. The upper scope could show something like GERD, which is treatable (you have actually been on a couple of the meds for it, but may not have been the right one for you or might not have done enough without diet modification).

As long as they don't see anything in your blood work or these test I think going forward with a tentative diagnosis of IBS-C isn't crazy... and there are lots of med and different diets you can try to help with IBS. So don't lose hope even if all the tests come back normal. It is a lot of trial and error to treat IBS, but you will eventually hit on what works for you.

If no other IBS meds work you may want to talk to someone about endometriosis. Track your pain and see if there is a cycle to it (you can do this now... don't have to wait). If there is, especially if you pain gets worse around your period, bring it up with your doctor. There are treatments, but they are much more extreme than IBS and can reoccur.

Sorry if I rambled a bit. Like I said I'm not a doctor but I too have been through the craziness of trying to get a diagnosis. As much as medicine tries to project the air of an "exact science" it is more trial and error than anything. I really hope you can find the source of your issues and feel better soon! Let me know if you need any advice from someone who has been in a similar (albeit slightly different) position.

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Old 03-08-2017, 11:46 AM   #3
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Re: Is it just IBS?

hi Shelley,

"Is it just IBS?" Yes and no.
IBS doesn't cause stomach pain and heartburn or that burning sensation under the ribs. That's congruent with gastritis or dyspepsia. It could also be GERD if you have an history of reflux and heartburn.
That said, Dyspepsia can be triggered by IBS and IBS is known to show itself after a traumatic digestive event, like a digestive virus, bacteria or infection. you do say this all started with a stomach flu.
Did you have constipation prior to this?

What were the results of the test for lactose intolerance?
I take it by the fact you continued to eat dairy that it was negative...
Well I'm not intolerant but I found out, also on the FODMAP diet, that I live best without it and I've realised my intestines were not affected by it, it's my stomach that rejects it (causes me nausea and makes me feel full). if you have too much acid in your stomach it will ferment hours later and make you feel sicker.
You say you feel better now from the stomach and that's probably because your on pepcid. what it does is exactly to counter the acids produced in the stomach.

IBS is an exclusionary diagnosis, which means every other possibility should be ruled out before a definite diagnosis.
The flex sig was a good idea but you should do more tests.
The "analrectal manometry" makes every sense, considering your constipation.
You should definitively have an endoscopy. It allows to check for lesions in the stomach and duodenum (for diagnosis of either gastritis, duodenitis or ulcers), also for physical problems like hiatus hernia or functional like presence of bile in the stomach, which would indicate bile reflux.
When I had this done they also did an abdominal echography (checking liver, gallblatter).
Do you know if you were tested for h. pylori?
It could be the root on your problems.
If necessary you could also have a colonoscopy to check the whole large intestine.

NSAIDS do the same to me. Their the worst for stomach (for anyone, but worst in our case).
When I do have to take them I take it in sachets diluted in water, after a meal.

About me:
chronically constipated since childhood. Diagnosed bile reflux at 18. Episodes of gastroesofagial reflux.
Hiatus hernia at 24. After years of tests finally diagnosed with IBS C and D at 26.
GI says hiatus hernia doesn't account for all my stomach pain and symptoms and says I have dyspepsia, that could or not be related to my IBS.

Last edited by SDR25; 03-08-2017 at 03:26 PM.

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Old 03-20-2017, 07:34 PM   #4
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Shelley2020 HB User
Re: Is it just IBS?

Thanks for the input!
I will be going through with the anorectal manometry but I got sick and spiked a 102 fever the day before the testing that did not come down for three days. I'm rescheduling it through my colorectal doctor back home as opposed to be GI doc near college due to grievances that have led me to start the hunt for a new GI doc (more on that later).

I have not been tested for h. pylori. As far as I know, the lactose intolerance test came back negative/normal. I have had constipation for years but didn't really know what was "normal" (I'm only 18) and things also got worse with the stomach virus and eating campus food. I now avoid my college dining halls and eat somewhere else on campus or make my own food.

I avoid dairy except for hard cheeses and greek yogurt (natural, no added stuff, just yogurt) with 2 lactaid pills. This is just what works for me and I have found the yogurt has helped me feel a bit better, it's hard to explain. I do know I have to be careful with wheat and eggs. No whole grains. No garlic or onions. No spicy food.

My pain, nausea, and bloating do have a monthly pattern. I talked to an OB/GYN back around Christmas when I noticed it and she put me on a low-dose birth control to see in what ways it would help. She only wants to run tests if necessary but doesn't want to leave things unchecked. I was supposed to see her over spring break last week (mid-March) but a large snowstorm dropped a foot of snow on us and it got cancelled with no time slots available that week. I will reschedule for when I come home in May.

The grievances concerning the GI doc start with the fact that she does suspect a hiatal hernia as it runs in my Dad's family but refuses to pursue testing as she wants to "figure out the constipation first" (total BS in my opinion). She never gives me a straight answer and consistently contradicts herself. An example being taking a fiber supplement to bulk up the stool then at the next visit saying it should work as a laxative. I'm just really frustrated by her and plan to find a GI doc closer to home.

My colorectal doctor was initially uneasy about only doing the flex sig since he felt he would not show the full picture. (Due to scheduling, it ended up being done at home, rather than with the GI doc up in NY where I go to college). He hasn't really said anything about doing a full colonoscopy but he's basically taken the backseat in my care and wants my GI doc to be the primary person handling this, which is totally fine. He was super great about explaining everything when I went to him questioning the GI doc.

At the moment, a combination of Miralax and Linzess mostly works. I say mostly because once a month things get thrown off and I "flare".

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Old 03-21-2017, 12:15 PM   #5
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Re: Is it just IBS?

Seems lately they tend to lump a lot of stuff into IBS.

Let them rule out ulcerative colitis and chron's disease.

I've had IBS for 2 years now and basically they have me take Metamucil 3 times a day and that's it.

Praying you get some relief soon.

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Old 03-21-2017, 02:38 PM   #6
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Shelley2020 HB User
Re: Is it just IBS?

Yeah I've noticed that IBS seems to be the "we don't know and don't feel like continuing to try to figure this out". I'm just really frustrated because my current GI doc refuses to actually listen to me and is really set on it being IBS. I am currently hunting for a new one.
A big reason my parents are in with me on actually checking everything out is that my dad's college roommate had his doctor ignoring his symptoms and calling it IBS, back when IBS was thought of as being all in your head. He ended up in the ER and lost his colon. Yup, it was ulcerative colitis.

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Old 03-21-2017, 04:13 PM   #7
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Shelley2020 HB User
Re: Is it just IBS?

Another quick note, wouldn't they have seen ulcerative colitis in the flex sig? I did notice that crohns can sometimes cause constipation and makes more sense of the consistent lower right abdominal pain I've been having. I also get random black stools that have me concerned but don't worry my GI for some reason.

Last edited by Shelley2020; 03-21-2017 at 04:14 PM.

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