Crohn's Disease Forum » Support Forum » Undiagnosed Club » IBD or just IBS? The million dollar question.


12-13-2017, 02:39 PM   #1
bp099
 
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Location: Des Moines, Iowa
IBD or just IBS? The million dollar question.

Hi Everyone! Iím looking for a little comfort and advice here. I apologize for the ridiculously long post but hey, everyone needs a good novel every now and again.

I am a 24 year old guy. Iíve been struggling with a number of gastrointestinal issues for the better part of the last year. It all started around a year ago with fairly sharp abdominal pain in the lower right quadrant along with loose stools and watery diarrhea. I swore I had appendicitis or something along that line. Got blood drawn and an X-ray taken and things looked great. Symptoms subsided a couple days later and I was fine for about 6 weeks until it returned again. Back to the doctor and walked out of there with the same story.

Fast forward to May 2017. About once every week or two I would have bouts of loose, crampy, watery diarrhea. No more than 4 or 5 times a day - worse about an hour after breakfast or lunch, but never dinner. Iíd usually feel like crap the next day but I would be fine after that until the next round. Another month of the fluctuating between flare-ups, I had my first real bad one. Severe, debilitating cramping with the most ridiculous diarrhea I think Iíve only had when I had the stomach flu - along with a ton of mucus. From July to August, I was having issues about once every week and a half. My ďnormalĒ bowel movements changed into mush. After many trips to my doctor with countless blood and stool samples that came back fine, I was referred to a gastroenterologist and waited two months for a consult. In the meantime, I had changed my diet quite a bit. Cutting out all beer, wheat, and corn with some success but had lost about 8 lbs in between August and October. This was also the start of my (somewhat irrational) fear of Inflammatory Bowel Disease. However, Iíve had zero blood in my stool, and all inflammation markers came back great.

Went to my GI appointment and was scheduled for a colonoscopy for the end of October. I was also prescribed Hyoscyamine to hopefully keep things at bay until my scope. The meds didnít agree with me at all, and the scope was unremarkable. Doc said I had one of the best colons heís ever seen. No inflammation, ulcerations, polyps, or abnormal structural deficiencies. He took a ton of biopsies that were fine as well. ďSee you when youíre 50Ē is what he told me afterwards. I was thinking ďGreat, IBD is out of the question.Ē

In the meantime, I went and got acupuncture done a couple times. It actually seemed to help for a little bit and things were solid again! It was like a miracle! However, things started back up again about a week and a half afterwards. Still felt better, but the same olí crap came back. I still plan on doing more in the future, just because of the relaxation it promotes.

A few weeks afterwards, I called the GI clinic again to let them know that I was still having issues and would like a follow-up to be done. The doctor put me on Cholestyramine powder that bound me up but seemed to help with the symptoms for a bit. After a week of that, they decided to have me stop the powder and have me start Lialda (yeah, the drug they use for UC and to induce remission in Crohnís) to see if it could have any effect on the symptoms. As I originally thought, it made things about 20 times worse and way more painful. I stopped it, called the GI clinic, they put me on Viberzi. When I (very strongly) inquired about more testing (MRI, CT, or Capsule Endoscopy), I just got the run of the mill ďThe doctor does not believe any further action needs to be taken, and your symptoms seem to resemble IBS.Ē This was when I promptly fired them, and got a referral into a private practice GI clinic literally about 3 blocks away. Now, Iíve been having loud gurgling and pretty large bowel movements that lasts a few days. And this is where things lay right now. More waiting.

So, Iím faced with more unanswered questions and quite a bit of anxiety regarding what the cause of these issues could be and might not be. UC and Microscopic Colitis almost always shows its face in a full colonoscopy with biopsies, and Crohnís still seems fairly unlikely as well... At least to me. SIBO or Bile Acid Malabsorption presents almost the same exact symptoms that I have, but I havenít had a doctor that has even thought about doing testing. Still, I am very concerned with the possibility of IBD and hate the fact that these flares could be doing some sort of damage in there. Who knows, maybe itís just IBS and I need to suck it up.

The emotional toll this has taken on my relationship and personal life has been nothing short of frustrating and borderline depressing. I havenít been able to go out and to the things I used to because of this. Itís also been fairly detrimental to my professional life as well.

If you read all of that, I want to thank you. Iím hoping you guys can give me some advice and comfort.

TL;DR -
*Problems with diarrhea, voluminous stool, crampy abdominal pain, mucus in stool, slight weight loss for about 7 months
*3-4 days at a time then its fine for about the same time.
*Had unremarkable colonoscopy with biopsies, zero inflammation markers in stool samples and tons of blood work
*Pepto and Immodium work to some extent
*Scared as s**t of any sort of IBD.
12-13-2017, 05:50 PM   #2
ronroush7
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Hi. I am sorry for all you are going through. Keep fighting until you get answers. I think more testing would be good. Let us know how you are.
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12-14-2017, 05:51 AM   #3
erk
 
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Hey, hope you can get some answers soon on what's causing your issues

I am undiagnosed myself, doctors suspect IBD so I've been reading about it as much as I can to try and alleviate my symptoms while I wait for biopsy results.
It has been really alarming at times reading people's stories of dealing with IBD and the plethora of issues that can come with it, on the other hand the difficulties folks are facing with it and still getting through is also inspiring to me.

There's a book called "The Clever Guts Diet" by Dr Michael Mosley, I really recommend you read a copy of that if you can. Although there are meal plans in the back of the book, it's primarily about gut bacteria and your biome. If you are having IBS symptoms there are some good ideas in there and a lot of success stories with people successfully overcoming IBS. Even if the book doesn't give you answers it's a great resource, I think, it might give you some good pointers to try.
12-19-2017, 11:03 PM   #4
bp099
 
Join Date: Dec 2017
Location: Des Moines, Iowa
Hi. I am sorry for all you are going through. Keep fighting until you get answers. I think more testing would be good. Let us know how you are.
Thanks, Ron. GI #1 finally approved a CT scan but theyíre over a month out yet and since the new clinic has been in contact, they want me to go through them instead. I now have an appointment with the new GI clinic on the 11th of January for a consult, so weíll see how this goes. Phew... I donít think hamsters even run in circles this much!
12-19-2017, 11:10 PM   #5
bp099
 
Join Date: Dec 2017
Location: Des Moines, Iowa
Hey, hope you can get some answers soon on what's causing your issues

I am undiagnosed myself, doctors suspect IBD so I've been reading about it as much as I can to try and alleviate my symptoms while I wait for biopsy results.
It has been really alarming at times reading people's stories of dealing with IBD and the plethora of issues that can come with it, on the other hand the difficulties folks are facing with it and still getting through is also inspiring to me.

There's a book called "The Clever Guts Diet" by Dr Michael Mosley, I really recommend you read a copy of that if you can. Although there are meal plans in the back of the book, it's primarily about gut bacteria and your biome. If you are having IBS symptoms there are some good ideas in there and a lot of success stories with people successfully overcoming IBS. Even if the book doesn't give you answers it's a great resource, I think, it might give you some good pointers to try.
It is alarming for sure. It makes me even more of a hypochondriac when Dr. Google starts to tell me stories. You are completely right on the inspiring part though, some people just donít even let it phase them and they just do their thing. Just gotta play with the cards you got.

I also ordered ďThe Clever Guts DietĒ today. I cant wait to crack that thing open. Thank you so much for the recommendation!
12-20-2017, 12:29 PM   #6
ronroush7
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Thanks, Ron. GI #1 finally approved a CT scan but theyíre over a month out yet and since the new clinic has been in contact, they want me to go through them instead. I now have an appointment with the new GI clinic on the 11th of January for a consult, so weíll see how this goes. Phew... I donít think hamsters even run in circles this much!
Best to you.

12-20-2017, 12:42 PM   #7
bp099
 
Join Date: Dec 2017
Location: Des Moines, Iowa
Quick update: Had another tough day yesterday and this morning. Went to Urgent Care and they called GI#2. They have now expidited my consultation to tomorrow. Hoping to be one more step closer to an answer!
12-25-2017, 10:45 PM   #8
bp099
 
Join Date: Dec 2017
Location: Des Moines, Iowa
Another Update:

Had my appointment with my new GI people. Very awesome registered nurse that actually took about a half hour to talk to me about what has been happening and the complications that have taken place. They were dumbfounded on what the old doctor was doing and really want to make things right and get the ball rolling on getting answers. Finally they took more blood and scheduled me for a CT scan tomorrow morning. They also scheduled me for a hydrogen breath test a couple weeks from now.

I had a pretty good Christmas weekend minus a couple of small setbacks. More or less tons of gas and abdominal cramping when I wake up that doesnít want to come out for a few hours after. Hoping things are on the right track now. I will update with the outcomes of all the tests. Thank you everyone for the support!
12-25-2017, 10:55 PM   #9
ronroush7
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Glad you are getting some help.
01-03-2018, 01:37 PM   #10
bp099
 
Join Date: Dec 2017
Location: Des Moines, Iowa
Hey everyone, just thought Iíd report back on the CT Scan and blood work. Basically they told me nothing looked out of the ordinary except a couple small regions of large intestine that are ever so slightly dilated. For some reason they didnít seem concerned at all by this and told me not to worry too much about it either. Blood work came back perfect.

They still do not suspect any sort of IBD at this point and we are still on track to do the fructose and SIBO tests in a couple weeks. Iím still having symptoms and things havenít gotten a whole lot better over the last few weeks.

So... should I have any reason to be concerned about the small amount of dilation they found? I know my GI stressed not to be worried about it, and I have had my colonoscopy two months ago where they should have seen any inflammation.

Praying for good things!
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