H-E-L-P! For almost 2 years now I have had liquid bowel movements, chronic intestinal gurgling & rotten egg burps! Can this really be IBS!?IBSD DIARRHEA ROTTENEGGBURPS SIBO INTESTINALGURGLING CHRONIC CONDITION NAUSEA FATIGUE
Posted 29 June 2018 - 01:39 PM
I have been suffering tremendously for almost 2 years now with a Chronic Gastrointestinal Condition, that has so far been undiagnosed. Below you can find my story. If ANYONE is experiencing the same thing as myself and has found a solution PLEASE POST BELOW. Any guidance is greatly appreciated at this point.
On the morning of October 4, 2016 my life changed as I knew it.
I woke up that morning with stomach cramps and severe rotten egg (sulphur) burps. Within minutes I was having explosive diarrhea. I cleaned myself out over the day, ate something during the night and the next morning it return again. The most off and bothersome symptom was the constant diarrhea accompanied by intense intestinal gurgling mostly felt on my upper left quadrant of my abdomen, the gurgling, the more intense it became the more liquid bowel movements I would have. So off to the ER I went.
There they did tests for C Diff, Bacterial Culture, Blood Tests as well as a CT Scan. Everything was negative. As a pre-caution they sent me home with 14 days of Flagyl. On day 4-5 I started to feel better. We now Fast Forward to 3 weeks off the antibiotics. The symptoms started to return just as aggressive as before. Back to the ER I went. The GI doctor I saw at the ER, scheduled me for a colonoscopy and endoscopy the following Monday morning. Tests were done, biopsy was negative and visually they saw absolutely nothing. I was told you could have IBS.
Over the course of the months following this I suffered tremendously and finally my family doctor sent in a referral to get myself followed my a permanent GI. (Here in Canada where I live, our Health Care if free but with limitations and crowded hospitals with lengthy wait times and appointment scheduling among many other things.)
This Gastro doctor wanted to get to the bottom of it. He told me at this point it could not be infectious due to length of period I had been dealing with it, so his first line was to prescribe me Imodium, Bentylol (Antispasmodics) as well as a Bile Acid Binder called Cholestyramine due to the fact that in 2011 (7 years ago) I had my Gallbladder removed. He also scheduled me for his own set of scoping tests including something called a Push Enteroscopy where they look further down into your small intestine.
I started the anti diarrhea medications. At first it was helping. 1 to 2 pills everytime I was really bad would stop the tap from running and let me go on with my day, as well as the Bentylol for the cramps. The Cholestyramine was being taken at 2 sacs a day but was unsure it it was working just yet due to the fact that it can take a month to see results. In the meantime he performed his series of scoping tests (Colonscopy & Enteroscopy) both were negative on biopsies and visually he saw nothing but clean intestines.
Over time the Imodium and Bentylol started to work less & less. It was at this point that I knew the Cholestyramine was no longer working so I stopped that. He prescribed me Lomotil as a substitution and opening taking it for the first time it reacted just as good as the Imodium did when I started it. While I was juggling with anti-diarrhea medications I was also experiencing with diets (FODMAP, SCD). If I stuck religiously to these diets the Rotten Egg Burps would not be present however I would still get the cramping, burning above my belly button abdominal pain as well as the loose stools and liquid diarrhea.
Fast forward to July 2017. My symptoms have now become so aggressive Imodium is no longer working (I could take up to 10 a day with lomotil and some Bentylol, and still have a liquid bowel movement) at this point my GI doctor thinks outside the box, he sends me for a stool test for my Calprotectin (Stool Inflammation) level and refers me to a doctor here in Montreal who specializes in SIBO (Small Intestinal Bacterial Overgrowth), he also suggest a MRE (Like a MRI but for the small bowel).
The stool test comes back in the massive upper range of 2100 (Normal is below 150). The MRE however is negative. A positive stool test this high signifies Chrons or UC or some form of Inflammatory Bowel Disease, however besides the elevated stool level all other tests so far show absolutely nothing. I see the doctor for a test for SIBO, a lactulose Breath Test. It came back elevated but not extremely high and due to the fact I had diarrhea when I was doing the Breath Test which can lower your results he was confident enough to diagnose me with Small Intestinal Bacterial Overgrowth and claimed I got these from taking two many antibiotics during the 2016 year for a reoccuring dental and prostate infections I kept having and then in July of 2016 I came down with the stomach flu which consisted mostly of diarrhea and little to no vomiting which he stated destroyed me intestinal flora composition. His treatment was 14 day antibiotic called Rifaxamin and a decent probiotic to replace my beneficial bacteria.
I took the Rifaxamin as prescribed (which by the way is ridiculously expensive) and followed with probiotics.
While on the medication I was perfect. I thought I was cured..little did I know..this was just the beginning.
As I came off the medication once again all symptoms started to return! So my gastro put me back on it for 10 days and this time had absolutely no result from it. I was lost at this point, no clue what to do to help me or my situation. I had quit school (when all this originally started) was down to working 10 hours a week at a part time job, have a 6 year old daughter and a wonderful fiancee that I could never take part in any daily plans with them due to the fear or me pooping my pants (which has happened many a times by this point).
In a last ditch effort my Gastroenterologist put me on Entocort, a cortosteroid made for the treatment in Crohn's Disease. At first I thought it might actually be working. But after 3 months at the highest dose I realized it was not actually working. He re-tested my Fecal Calprotectin level and this time it came back at a low marker of only 45 so he considered the first test a "false positive" reading. I thought the Entocort had lowered it and he told me not from 2100 to 45, maybe from 2100 to 1500 but not that big of a difference. So he waited and tested again and it came back at 22.
As I sit here and type this on the forum I am still currently suffering from daily explosive diarrhea, chronic intestinal gurgling on upper left side of abdomen (which gets significantly worse after food) and sulphuric burps. I am currently on the waiting list for a Capsule Endoscopy however the doctor is convinced it won't find anything due to all the other tests showing absolutely nothing. I have also recently completed a 5-HIAA Urine Collection to check for rare endocrine tumors in my pancreas or small bowel, however I am assuming at this stage if it was a tumor especially in my pancreas it would have most likely spread and I would be hospitalized on the regular.
Below is a list of all tests and medications I have done and taken to try and diagnosis and solve my problem:
CT SCAN + CT ENTEROGRAPHY
STOOL TESTS FOR C DIFF, BACTERIA, PARASITES
LACTULOSE AND GLUCOSE BREATH TESTING
GASTROPARESIS NUCLEAR SCAN
BLOOD TESTS FOR EVERYTHING
IGG FOOD INTOLERANCE TESTING
5-HIAA URINE COLLECTION (AWAITING RESULTS)
CAPSULE ENDOSCOPY (PENDING APPLICATION)
Medications Currently Taking or Previously Taken
Imodium, Lomotil, Bentylol, Cholestyramine, Entocort (Cortosteroid), Flaygl, Cipro, Rifaxamin, Caltrate Plus, Saccromyches Bouleardi, Align, HMF Multi-Strain Probotic, Peppermint Oil Capsules, Pepto-Bismol, Candibactin AR & BR (Naturopahtic Treatment for SIBO), CBD Oil & Medical Marijuana. As well as Elavil and Desipramine which are anti-depressants to help slow bowel motility. I am currently trying Atrantil which is another supplement used for Hydrogen or Methane SIBO and I have been taking it 7 days now with no returned results. If anything my liquid diarrhea has been sent into overdrive.
This can't just be IBS like every doctor is trying to put it off to be. I know people who have IBS and they do not go to the bathroom 10-15 times a day pure liquid and have sulphuric rotten egg burps which accompany before these diarrhea episodes.
ANY ADVICE OR COMMENTS WOULD BE GREATLY APPRECIATED.
I just want to be better
Posted 30 June 2018 - 06:53 PM
Posted 01 July 2018 - 09:08 AM
Heres what i do to manage. I dont care if you try it or not but this is what has worked best for me.
1- dramatically reduce your diet. Find your safest foods. Try low fodmap and then go even lower. I am having the most comfort with rice, meat, eggs, zucchini, asparagus, bananas, plantains. Its not much but if this is all i eat and i feel ok, its SO worth it.
2- never take probiotics again. I have spent loads of money and wasted time and these things always make me worse worse worse. I never want to take another oral probiotic again. FMT is another story but it did not solve my issues. Maybe it can help you.
3- keep antibiotics close and take them as needed. I have used rifaximin, metronidazole, bactrim, and tetracycline. I actually find that tetracycline works best for me to calm everything down inside me. I take it for a couple days every couple weeks and it helps keep the bloating and urgency down a little bit.
If something helps you, keep doing it. I do not worry anymore about long term damage or whatever. I just do what i have to do to get by today. Good luck. IBS is a heavy weight to carry. But after 15 years I have found a few things to help me cope.
Posted 01 July 2018 - 09:48 AM
Might be worth talking to an ND. Treating SIBO can cause SIYO/SIFO b/c Xifaxan nukes the bacteria keeping the yeast in check.
The sulfur belching is interesting. Wondering if that means you're Hydrogen Sulfide high instead of H2. Most breath tests can't separate those two compounds and it makes a big difference in treatment.
Some doctors treat SIBO with Xifaxan + Diflucan in order to avoid an iatogenic yeast problem. (Which probably happened to me)
Did you have any luck with the low-FODMAP or SCD?
Posted 01 July 2018 - 09:51 AM
Also... thought of something else... how do you feel if you take Benadryl (anti-histamine)?
Posted 01 July 2018 - 01:41 PM
Posted 08 September 2018 - 04:24 PM
I read your story and I think it's very touching and people shouldn't be suffering like you had for 2 yrs and counting without a diagnosis.
First of all let me tell you that a calprotectin level as high as yours, it is indicative of some inflamation disease problem for sure.
Tell us something. On both colonoscopies you did, did they test you for microscopic colitis? It's a kind of UC that it can only detected with a biopsy and viewed in the microscope.
At the same time if you took a steroid used for crohn's(or UC don't know) for 3 months, that of course will lower your inflamation markers to normal values(steroids are only supposed to be used for short term remisson 3 months is a bit of stretch).
There are patients that when use steroids and acheive remission they can even have negative calprotectin values just FYI.
Did you have C reactive protein measured also before and after steroid use? how much was it?
Then what you say happen afterwards is also compatible with this. There are steroids that are used to bring remission to crohn's patients. However, when used and then when people discontinue them abruptely, they may not be able to use the same steroid again if state of remission is "lost". That's why people need to speak to their doctor in a very careful way about this and lower the dosage progressively to see if the remission is maintained(and if everything goes ok, then and only then, stop using them).
The problem here I think is that you were never officialy diagnosed. From you test list I'm baffled to not see a fecal occult blood. This could be useful together with your calprotectin initial test.(now after the steroid use don't know if it will be that useful...).
Finally the capsule endoscopy test can be very useful because it may show scarred/narrow tissue/inflammation in the small intestine and help to give some light.
However, please take into consideration the fact that if you have active crohn's, the probability of capsule getting stuck is much higher than 0,5%-1%.
Of course in your case I think it's still worth doing it because you don't have a diagnosis, but as all medical procedures the risk vs benefit trade off should be weighted by everyone of us that submit to diagnostic procedures.
Hope you can be diagnosed and start your path to recovery.
I'll wait for your feedback and with that maybe I can try and give you some more help(if I can).
Posted 08 December 2018 - 08:15 PM
I just found this forum. I have been struggling with IBS since the spring of 2018 and my have went from severe to pretty mild but I still feel I have a lot of recovery to go. I live in Montreal as well perhaps we can meet up and share about our experiences. Even if I could just lend a listening ear.
Hope you find relief soon and keep persevering!