[GilmoreGirl]

Hi all,

Ive posted before but havent received much insight - just posting again in case anyone has any ideas.

My symptoms began after I took morphine and anti-inflammatories for a few months for a painful injury.

I have tested positive for methane SIBO BUT my gp and naturopath both think something else is going on. Ive been on rifaximin and flagyl twice, as well as a herbal antimicrobial + biofilm disrupting protocol. Low carb dieting for months on end. Have seen no relief.

My symptoms are as follows (sorry in advance for the detail):

- cyclical symptoms that come on suddenly, are horrible for one-two days, bad for a day, then subside, only to return after two days. This waxing and waning cycle has been going on WITHOUT FAIL for months

- horrendous gas - constant flatulence that smells awful (smell goes away when Im feeling better), and is non stop. I can feel the gas moving me through me all day and it is constantly being produced - it keeps me up at night

- sudden constipation - when cycle of symptoms starts up again, I have little or no bowel movements

- sudden greasy/fatty stools - when cycle of symptoms begins, I notice that bowel movements (when I have them) are very greasy, float, are loose, and stick to the side of the bowl

- dizziness

- nausea

- extreme fatigue and feeling of pressure in my head

- bloating (obviously from all the gas...)

- lack of appetite

- pretty constant stomach pain - normally left side but sometimes elsewhere

These symptoms I know dont sound horrible...but they are ruining my life. About half of the week (every week) Im not well enough to even get out of bed. I cant concentrate, am farting constantly, and smell horrible. Im often in a lot of pain even on good days. I am unable to work (Im a personal trainer) and am supposed to be starting my phd in the fall but am having trouble finding a supervisor due to my unreliability (its devastating to not be able to give 100% to school). I am going broke too to top it off.

All the obvious things have been tried and tested. My blood work and stool samples are fine. I havent lost weight - probably because I force myself to eat on schedule. My diet has been stripped to bare bones, no improvements. Nothing seems to break this on/off cycle of symptoms every few days.

Im beginning to think its something crazy like Lyme or giardia, because nothing seems to fit the symptoms. Im really having a tough time getting through this, and its dofficult to get doctors to take you seriously when Im not losing weight and seem to have such strange symptoms. Ive been told several times its psychosomatic, been on antianxiety and antidepressant meds, and seen a psychologist and psychiatrist - who agree I have good control over anxiety.

Please, if you have any thoughts let me know. Im absolutely desperate to have a real life! Thanks

 

[attempttohelp]

I'm sorry to hear you're suffering through this, but the less you despair, the faster it'll become manageable or even start to go away!

I made a topic about my recovery story and I think it might be useful for you to read it, even if it's a bit of a big text wall.

http://www.ibsgroup.org/forums/topic/348897-ibs-recovery-a-positive-story/

I'm not a doctor, but in my experience with IBS, sometimes your body is fine but just is "off balance" in the bowel region, and it can't get back to normal by itself as quick as in other people. It just starts feeling it's normal to go to overdrive every couple days, just like a depressed person might go into a really bad mental place every couple days and can't just get themselves out of it.

It's most likely a matter of finding the right combo of diet, medication and mental exercises to throw your body back to balance. Once it goes back to a stable equilibrium for a few days or weeks, it will be harder for something to kick it off that balance.

Hope this gives you some kind of solace, and that you feel better soon!

 

[GilmoreGirl]

Thanks for your reply, but my doctors agree this is not ibs. Your reply is actually a little disheartening - I get where youre coming from, but its tough when youve been so sick for so long to hear another person say its ibs and that changing my attitude and stress will help. Of course everyone feels a little better when stress and anxiety are eliminated - but for me, a little better is not even enough to live a near normal life. And Ive been through intensive therapy for pain management, including mindfulness etc. I have those practices and ideas in my toolbox and I use them.

Its also important to note that I work with a naturopath, gp and a dietician. All of them agree there is something wrong, we just need to get the right specialist on track to figure out what it is. Ive been like this for a long time - Ive tried every combination of diet, medication and mindfulness to make myself feel better. Im really looking for anyone out there who has also had a similar strange symptom pattern or who has any ideas of what may be causing it.

Thanks for the sentiment anyways, Im sure for some it would really help.

 

[attempttohelp]

I totally understand what you mean, and I'm not sure if you had a chance to go through my text wall, but I'm really sorry if I made it seem like your situation (or even IBS for that matter) is some trivial thing you just "get over with" by being less worried. I know from personal experience I hated when people sounded that way towards me, and it happened many times.

I understand you're in a lot of pain. I specifically relate to blood and stool samples being perfect and not losing weight, while still being in great discomfort.

I had over 10 years of IBS stuff and sometimes the flares would happen in patterns similar to the ones you describe. Sometimes I'd feel better, sometimes I'd have worse patterns.

Specifically, maybe ask your doctors about pinaverium bromide and trimebutin maleate. The first one is a phytotherapic compound, a simple plant extract, so your naturopath might be familiar with it too. It takes a while to start going, but over the course of months it did a lot for me. The second one is just a stronger version of this first one, for when the bowel swings are more out of control.

Even if it's not IBS, maybe those might help? Also did you try any kind of probiotics (the most common one here seems to be saccharomyses boulardii)? Do gluten free products help at all? I know in my case I didn't have any actual problem with gluten, but eating gluten free for a while relieved things a little bit. Do you take some medicine for the cramps and the gas? There's some that can help through the worse moments.

I'm sorry if my replies are disheartening. I'm throwing as many ideas as I can to hopefully see your situation improve

 

[GBFreek]

I'm assuming your doc has ran all the standard tests, basic scans? (ultrasound, etc).

I'm 12 months into PI-IBS after suspected food poisoning or water borne parasite (campy, giardia). I was NEVER fully diagnosed with any parasite, as did not have stool tests done until 7 weeks after it started. However, it simply may not have been picked up. My symptoms were never as severe or constant as yours appear to be, but the first 3-6 months were pretty rough (gas, fatigue, death farts, very sudden bowel movements, oatmeal consistency, and just a general sense of discomfort - would not call it pain). Never had dizziness or nausea

I have trended to 80-90% better - via the simple passage of time, sticking to a moderate FODMAP (I am not very strict on it), and probiotic use. I still have days of bloating, and my stools are more inconsistent than previous to coming down with this, but are generally solid.

I doubt I have a lot of ideas for you that you would not have already vetted - but check for food intolerance's, try the low-fodmap or Cedar-Sinai diet, rotate probiotics, limit fiber/raw vegetables. IDK, shooting in the dark here. I did not really make a consistent positive turn until the 9 month point. My doctor was always certain it was just a post infectious issue that could last years(!) - however, I did request a ultrasound given bloating was a consistent symptom for me. Ultrasound was the simplest, least invasive method he agreed to given my symptoms did not require a CT in his mind. It ended up being all clear.

Keep us posted...

 

[GilmoreGirl]

Attempttohekp - thanks. Its good to know there are others who understand how I feel. I did read through your story and Im sorry you had to go through that. I will ask my doctors about those medications - but antispasmodics generally are not good for sibo as they can slow down the movement of the bowel - I need to keep the movement of the small intestine as active as possible (plus I have constipation).

I have tried several probiotics. I had good luck with a blend of lactobacillus and bifidum probiotics, but the positive effects were temporary. Because I have sibo, I should avoid taking probiotics until the bacteria is eradicated and the movement of the small intestine is restored - we dont want to add more bacteria to a place where they should not be.

Generally, I feel horrible when I eat any carbs (thats probably because of the abnormally high amounts of methane bacteria). But even when I avoid them completely I have symptoms. I currently eat dairy free, gluten free, low fodmap, low carb, and moderate fat (because I dont seem to absorb them at all). Basically, chicken, some well cooked veg, turkey, low carb rice based protein powder, etc. Fun stuff.

I havent found any medication that helps me with cramps and gas - but Ive tried many. Simethicone in particular makes my pain much worse.

Thanks SO much for the ideas - I really do appreciate it. And I can relate to your story - part of the reason I know this isnt just ibs + sibo is that I was diagnosed with ibs 8 years ago. I had it under great control, and never in my life had symptoms even remotely like this. My food tolerance was much wider, my life much more normal. Id love to go back to that lol!

 

[GilmoreGirl]

GBFreek - thanks also for your reply! Im sorry youve also struggled. This stuff is no treat.

Like I said above, pretty much tried every diet out there and I am sticking to the absolute basics at the moment. Not much help there - except keeping carbs low at least seems to help maybe %10-15. Definitely have to limit fibre - especially insoluble - gives me HORRENDOUS pain. Went to the hospital once after eating a granola bar with flax in it by accident.

Probiotics have helped a little but temproraily (even with rotation) - but are not good for me at the moment as Im trying to eradicate the sibo. I think they improve the situation in my large intestine but the issue in my small intestine remains. Nothing has broken the cycle of symptoms so far, just sometimes the bad days are not as bad (normally that was during antibiotics).

I had lots of tests before this all started for an unrelated reason (kind of yuck but I was having a rectal surgery and needed to make sure I had no intestinal inflammation first). I had a colonoscopy many years ago that showed some inflammation, but the one last year showed none. I also had an endoscopy and small bowel mri - both were clear.

There are some caveats to this however - my doctor was a horrible person. Since my tests, he was removed from his position for malpractice. When I wanted to see him for my current issue many months ago, he told my doctor that I should seek psychological help and refused to see me. Apparently he did this to several patients, so something there was not right.

Secondly - I was on strong anti knflammatories during these tests, as well as antibiotics! This makes the results pretty unreliable as far as testing biopsies ( for h pylori etc).

I do see a new gastroenterologist mid April - I have my fingers crossed they will take me seriously but Im not getting my hopes up.