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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Antibiotics caused my ill health - still undiagnosed after two years and need some help. - Possible severe SIBO or something else ?.


09-01-2013, 08:44 AM   #1
taya92
 
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Antibiotics caused my ill health - still undiagnosed after two years and need some help. - Possible severe SIBO or something else ?.

Hello everyone , I've just joined up to the forum after reading many threads here and coming to the conclusion that regardless of your digestive health problem this seems to be one of the most informed and friendly forums to visit.

Firstly sorry for the long post but it would be hard to explain my situation briefly so I hope you could kindly take the time to read my post.

I'm from the UK , I'm male and am now aged 21. From birth and being on milk I have always suffered from quite severe constipation with no known cause. This is still the case to this day despite an extremely healthy diet.

Between the ages of 12 and 15 I had an ongoing health problem that was near impossible to get diagnosed , I missed many years of school due to severe pain in my pelvis and passing water that never seemed to let up. It turned out however after seeing numerous urologists that I was suffering from prostatitis and prostate enlargement which as I'm sure you can imagine is very rare in children, it was diagnosed after they actually used a camera to take a look. The urologist I was under was fantastic and a urologist who had previously shunned me actually came to me personally and apologized. Finally getting diagnosed with something was great but little did I know the treatment of prostatitis isn't always helpful. Needless to say I was put on a long term course of various antibiotics and pain killers and was ( and still am ) under the care of a pain doctor. My urologist had come to the conclusion that severe constipation may have in part caused my prostate issues by putting excess pressure on my prostate gland.

After around two years on the treatment which was then discontinued the prostatitis seemed to be getting easier to manage but different health problems started to pop up. I was suddenly deficient in vitamin b12 , b9 and was developing acid reflux which in part was causing breathing difficulty at night. I was also suffering from night sweats and extremely vivid dreams. Later on acne started to appear on my face which was very bothersome and I was always very fatigued.

At the time I hadn't linked any of this to antibiotic uses and after discussing with my doctor that the acne was bothering me he prescribed me a months course of tetracycline. Taking that drug in particular was the biggest mistake of my life.

I finished the months course and over the next month I suddenly dropped two stone in weight , developed severe stomach burning , extreme reflux that made me nauseous all day long, food allergies to wheat , dairy , nuts and fish, worsened constipation, my mal-absorption problems worsened and on top of the b12 and b9 I also developed a severe vitamin D deficiency.

My GP was very un-supportive and wouldn't refer me to a gastroenterologist despite my worrying symptoms. I ended up paying privately to see a doctor who was shocked at how underweight I was and performed an endoscopy and colonoscopy. The colonoscopy came back fine although the endoscopy found stomach and esophagus erosion with no known cause. I was given acid blockers and sent away.

Over the next year the symptoms were worsening , I dramatically changed my diet. I no longer eat gluten , dairy , fish or nuts and have a strict zero sugar diet apart from the sugars in sweet potato and occasionally gluten free bread and sweetcorn. I only drink filtered water.

Whilst the diet made me feel a little better still my health problems were worsening , I was loosing more weight and at this point looked skeletal. I was always fatigued and couldn't gather the energy to do pretty much anything. My stomach was constantly on fire regardless of what I ate , I was always constipated despite my diet , the reflux was terrible , very severe joint pains started to pop up which I now suffer with on a daily basis.

I had to do something so went to see another private doctor who turned out to be much better than the last. He performed another endoscopy which took a look at my stomach and the start of my small intestine and found a stomach ulcer and " evidence of H.pylori " , they took some biopsies and I was told to wait for the results. My small intestine despite the absorption issues apparently looked ok.

Of course the treatment of H.pylori was antibiotics and I did not want to take them. I spoke again to my doctor about how I was positive it was antibiotics that had triggered all of these health problems and also paid for a stool sample to be performed by genova diagnostics. The stool sample found no trace of H.pylori whatsoever and found that I had zero growth of lactobacillus acidophilus ( no surprise after that many antibiotics ). No parasites were found but high levels of streptoccoccus were found and also high levels of betaglucronidase which is an enzyme induced when anerobic bacteria ferment.

We took a look at the biopsy results from the endoscopy and it turned out that H.pylori wasn't found there either. My doctor came to the conclusion that H.pylori wasn't the problem at this point with which I agree.

Just in case H.pylori was present though instead of taking the antibiotics I decided to take a course of the controversial natural H.pylori treatment matula herbal formula for one month , I had another stool sample performed by my GP after the treatment and as expected it was negative.

Over the last two days I've had another endoscopy performed which again found no evidence of H.pylori but that my stomach ulcer was looking a little better ( although the test was performed by a different doctor and honestly it seems to be hurting just the same ). I also yesterday had a small bowel CT scan which I'm hoping worked ok since I only managed to drink 3 cups of the barium before I had quite bad stomach ache and couldn't drink anymore as much as I wanted to. They performed the scan and told me my results would be with my doctor shortly.

At this point despite much speculation I still have no diagnosis as to what's going on. My symptoms now consist of stomach burning ( likely caused by the stomach ulcer and gastritis with no apparent cause ! ) , nausea , extreme weight loss ( I look like a walking skeleton at this point regardless of how many calories I eat ) , malabsorption of b12 , b9 and vitamin D , terrible joint pain which worsens upon touching my skin ( I'm guessing this is some type of auto immune issue related to my digestive problems ) , the acne is still present although much better since avoiding the foods I seem to have allergies to , extreme fatigue , the continual constipation and various other bothersome symptoms. Obviously the vitamin deficiencies all come with their own symptoms and supplementing doesn't seem to help my levels , as my doctor says " if you aren't absorbing them taking more isn't likely to help anyway ".

So what do I know for sure ?.

I've had celiac ruled out and I avoid gluten strictly anyway , H.pylori is now ruled out as are parasites, colitis is extremely unlikely as is Crohn's disease although both are still being considered a possibility.

I know for a fact that antibiotics were the cause of my ill health. My doctor has taken into consideration that my stool sample shown evidence of fermenting microbes and no growth of lactobacillus species but doesn't think this alone would cause such severe symptoms.

I'm at a loss of what to do now , if these recent tests come back again with practically nothing I can't think of much else to do , I just want to gain some weight back at least !. It's horrible to look and feel like this. I've tried carb free diets but without much to soak up the acid in my stomach the burning becomes unbearable and honestly I just seem to feel worse without carbohydrates in my diet, more tired and nauseous.

I'm thinking SIBO could be a possibility considering my stool sample results and past experience with antibiotics and am going to request a breath test although it seems to be usually diarrhea and bloating that is symptomatic of this and although I suffer with occasional bloating I don't really suffer with either. Could SIBO really cause stomach ulcers , extreme weight loss and so on ?.

I can't think of anything else I can do to help myself.
I don't expect any miracles but if any here has had any similar experiences with antibiotics or anything similar at all any comments would be appreciated.

Again sorry for the extremely long post and thanks for reading if you've taken the time out to do so.
09-01-2013, 11:47 AM   #2
bozzylozzy
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Hi taya! And welcome to the forum.. Thank you for sharing your story with us.

You have been through a lot
I dont know if the antibiotics caused this.. however with the amount of treatments you have had over the years.. I wouldnt be surprised.
Do you have any other symptoms that dont involve your digestive system? (Such as joint pain?)Because there are other auto immune illnesses that can mimic IBD. So maybe a referral to a rheumatologist could be a good idea? I have found my GP and gastros to be dismissive.. but my rheumatology team are great. They treat patients with a wide range of AI illnesses including IBD.

What is the next step for you?
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09-02-2013, 06:50 AM   #3
UnXmas
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I know how hard it is to have so many symptoms undiagnosed and untreated for so long. I have a few different health conditions, some extremely rare, and spent years undiagnosed. Honestly, what helped me most was to give up on trying to get diagnosed and healthy. Whilst some of my symptoms were eventually diagnosed (which was actually a real anti-climax - it didn't lead to better treatment, it didn't feel like I'd found "the answer", which I'd previously thought diagnosis would give), I've concluded that I have a medical condition which is all my own.

Personally, I would only avoid foods if you're truly allergic to them, or have conditions like lactose intolerance, coeliac or whatever where there is a clear link between food and your health. If you're underweight, giving up sugar is not a good idea. Even if certain foods are classed as unhealthy, if you're underweight it can be better for you to eat "unhealthy" foods if they help you gain.

What makes you certain that antibiotics caused your problems? I've found that I tend to want to look for correlations between food, meds., etc. and symptoms, but it was too easy for me to start seeing patterns which I later found weren't there. I'm not saying this is the case for you, but it you might want to think about it.

The best thing anyone can do with chronic illness where there's no guarantee that treatment will be found anytime soon is to learn to live as best they can with the illness they have; I wasn't able to do this for a long time, but now that I can, even though my symptoms are worse now than before, I don't find they impact on my life nearly as much as when I was concentrating on trying to get diagnosed.
09-02-2013, 07:26 AM   #4
plantluvr
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hiya.sorry your going through this. have you been tested for gull stones? i went 8 months with similar symptoms.nausea vomiting weight loss burning in my stomach joint aches. i went to the er 40 times with being in so much pain. somtimes they said crohns flare. i had one doc tell me constipation even though i had d 5 times that day. finally got a dr who who actually seem to care. did a ultrasound and found stones in my cystic duct. had them and gull bladder removed. also some antibiotics and some crohns meds have given me pancreatitis. so i do know meds can be responsible for other medical issues. i hope you find something out soon. may want intoduce probiotics maybe homemade yogurt. take care and wish you well!
09-02-2013, 06:34 PM   #5
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I was diagnosed with SIBO, but two courses of Xifaxan did not help. If you and your doctor think that SIBO is likely (as even part of the problem), it would probably be worth taking Xifaxan (Rifaximin). Honestly, though, I think it's probably more than SIBO. I wish I could tell you WHAT, but I am also dealing with undiagnosed digestive issues. Have you tried various probiotics?
09-03-2013, 02:18 PM   #6
taya92
 
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Thank you for all the replies and I hope you're all feeling well.

Hi taya! And welcome to the forum.. Thank you for sharing your story with us.

You have been through a lot
I dont know if the antibiotics caused this.. however with the amount of treatments you have had over the years.. I wouldnt be surprised.
Do you have any other symptoms that dont involve your digestive system? (Such as joint pain?)Because there are other auto immune illnesses that can mimic IBD. So maybe a referral to a rheumatologist could be a good idea? I have found my GP and gastros to be dismissive.. but my rheumatology team are great. They treat patients with a wide range of AI illnesses including IBD.

What is the next step for you?
Thanks , I do suffer from severe joint pain which strangely worsens upon bathing or having any pressure applied to my skin. I've got no idea what that is !. I've also been suffering from migraines and frequent urination waking me up 1 - 3 times a night.
I may just ask my doctor about a referral to a rheumatologist.

As for what's next I'm planning on asking my GP this week to check my for diabetes ( which seems unlikely ) , to check my thyroid and also my blood sugars in general.

I know how hard it is to have so many symptoms undiagnosed and untreated for so long. I have a few different health conditions, some extremely rare, and spent years undiagnosed. Honestly, what helped me most was to give up on trying to get diagnosed and healthy. Whilst some of my symptoms were eventually diagnosed (which was actually a real anti-climax - it didn't lead to better treatment, it didn't feel like I'd found "the answer", which I'd previously thought diagnosis would give), I've concluded that I have a medical condition which is all my own.

Personally, I would only avoid foods if you're truly allergic to them, or have conditions like lactose intolerance, coeliac or whatever where there is a clear link between food and your health. If you're underweight, giving up sugar is not a good idea. Even if certain foods are classed as unhealthy, if you're underweight it can be better for you to eat "unhealthy" foods if they help you gain.

What makes you certain that antibiotics caused your problems? I've found that I tend to want to look for correlations between food, meds., etc. and symptoms, but it was too easy for me to start seeing patterns which I later found weren't there. I'm not saying this is the case for you, but it you might want to think about it.

The best thing anyone can do with chronic illness where there's no guarantee that treatment will be found anytime soon is to learn to live as best they can with the illness they have; I wasn't able to do this for a long time, but now that I can, even though my symptoms are worse now than before, I don't find they impact on my life nearly as much as when I was concentrating on trying to get diagnosed.
Thanks for the reply, I know for a fact antibiotics caused my health problems since I deteriorated extremely fast just at the end of the last months course of tetracycline I took. I've read numerous people saying the same thing ( about tetracycline in paticular also funnily enoug ) many times now whilst searching the web. A cause of SIBO , gut dysbiosis and certain digestive diseases can be antibiotics also as I'm sure you'll know so it make sense in that regard also. My question really is just what problem did they cause.

I'd love to be able to learn to live with this but being so underweight and in constant pain I'm in need of at least some relief and hopefully a diagnosis.

hiya.sorry your going through this. have you been tested for gull stones? i went 8 months with similar symptoms.nausea vomiting weight loss burning in my stomach joint aches. i went to the er 40 times with being in so much pain. somtimes they said crohns flare. i had one doc tell me constipation even though i had d 5 times that day. finally got a dr who who actually seem to care. did a ultrasound and found stones in my cystic duct. had them and gull bladder removed. also some antibiotics and some crohns meds have given me pancreatitis. so i do know meds can be responsible for other medical issues. i hope you find something out soon. may want intoduce probiotics maybe homemade yogurt. take care and wish you well!
Thanks for the advice, I haven't been checked for gallstones but as mentioned I do have the stomach ulcer. My mum actually suffers from gallstones lol !.

I was diagnosed with SIBO, but two courses of Xifaxan did not help. If you and your doctor think that SIBO is likely (as even part of the problem), it would probably be worth taking Xifaxan (Rifaximin). Honestly, though, I think it's probably more than SIBO. I wish I could tell you WHAT, but I am also dealing with undiagnosed digestive issues. Have you tried various probiotics?
Thanks , I have tried a few different strains of antibiotics and they actually tend to make me feel worse more than anything but this can be the case with SIBO and finding a specific strain of probiotic is sometimes necersarry. I'm just hoping that the CT scan I had performed might find something although it's looking unlikely.


I was think week attempting to try the SCD diet and I've bought a few things, I'll see how far this goes I suppose. I doubt I'd ever get better though without some form of treatment , whatever is wrong with me is so severe to be causing extreme weight loss and malabsorption regardless of what I eat so I can't see a diet helping much alone.
09-03-2013, 06:02 PM   #7
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Did you specifically try Rifaximin? It's supposed to be the best for SIBO, I think.

Have you been tested for C. Diff?
09-04-2013, 06:03 AM   #8
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Hi , sorry I meant to say I'd tried different strains of probiotics , not antibiotics.
Since taking the last course of tetracycline that made me loose all the weight and start my declining health around two years ago I haven't dreamed of touching a course of antibiotics since. In fact I'll be honest and say I've developed a fear of them. It's the reason I was so reluctant to take the H.pylori treatment and it's lucky I didn't really since it may have turned out it was never there in the first place.

I wrote down rifaxamin to ask my gastroenterlogist about it and he was very open minded about it and I think he'll do a breath test for me but wanted to do the endoscopy and CT scan I've just had first to make sure there is nothing else going on first.

I first heard of Rifaxmin when I had the comprehensive digestive stool analysis and the doctor who interpreted the results mentioned it may be useful for me although she thinks a low carb diet ( which I don't generally agree with ) and high dose vitamin C may be sufficient.

I worry vitamin C ( being ascorbic acid ) may irritate the lining of my stomach more and make the gastritis and ulcer worse and before I try any natural treatment I'd like to actually get a diagnosis. Having nothing concrete it's extremely hard to get my GP to take me seriously, I'm lucky to have found a gastroenterologist who like me is convinced something is definitely wrong.

If I do however unlikely it may seem have crohns disease it would be likely be in my Ilieum considering the malabsorption of vitamin B12 and vitamin D in particular and also the malnutrition.

As for C.diff I'm fairly certain that the digestive stool analysis I had performed would have picked up any traces.

Thanks for all the help.
09-04-2013, 12:15 PM   #9
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The stool analysis may not have picked up C. Diff if it wasn't specifically looking for that. Check with your doctor.

High dose vitamin C may also cause and exacerbate diarrhea.
09-04-2013, 01:07 PM   #10
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The stool analysis may not have picked up C. Diff if it wasn't specifically looking for that. Check with your doctor.

High dose vitamin C may also cause and exacerbate diarrhea.
Thanks , I'll ask my doctor about the C.Diff then ( if I can ever get an appointment ! ). Diarrhea is something I've never suffered with unless I'm ill so that's something I'm generally never worried about. That's another reason I doubt Crohns is my problems but only time will tell I suppose.

I'm going to ring my gastroenterologist's secretary tomorrow and she if she has the results and can tell me over the phone whilst making a new appointment. There's nothing worse than waiting for stuff like this.
09-11-2013, 07:00 PM   #11
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Hi. Sorry you are suffering for so long. I hope the recent tests bring some helpful results. My son used VSL#3 Probiotic for about a year .... it may have been a very SLOW contributor to his improved health. My other children have also been on doxycycline and that caused stomach pain for them - but worked wonders on their acne. I will not let Danny take that as I am too afraid it will set things back.
Good luck and keep us posted!
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09-14-2013, 05:53 PM   #12
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The doctor that had been pioneering the treatment for SIBO is Mark Pimentel. His book is called "A New IBS Solution". Like Chikadee mentioned, he treats his patients with Rifaximin and he recommends a diet that starves the bad bacteria.

http://www.anewibssolution.com/

I know there's no easy answers, but being proactive can give hope. Try to stay positive. Hope you feel better!
09-20-2013, 04:50 AM   #13
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Well as expected all the results from the scan came back fine. Nothing worth noting. My doctor seems at a loss of what to do now and my symptoms are only getting worse. I got the impression he didn't want to do the SIBO breath test either. I've just booked an appointment with a professor who deals with gastro problems and I read he's familiar with SIBO and bacterial problems but that's not until the end of November so I suppose I'll be struggling until then. I've had over 10 hours sleep after a busy week and today I feel as if I've not slept a wink , my body is aching , stomach burning. Whatever happened to me is driving me insane. It's so frustrating to keep getting negative results on everything and being so underweight that I look skeletal and not being able to absorb anything I eat with no help from anyone is a nightmare. It knocks my confidence massively.

I want to eat more carbs and sugar to gain weight but I'm terrified they'll be feeding the bacteria and make the symptoms worse. What a dilemma I'm in.
09-22-2013, 09:30 AM   #14
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Taya92,

I am sorry you are struggling. I understand where you are coming from. I also have had tests come back not showing much, but I am miserable 98% of the time. I also try and stay with a healthy diet, I try not to eat sweets to much either. It is like a catch 22. But I will say that actually, when you eat carbs, it is true it can feed the bad bacteria, but it also feeds like good as well. So when you stop eating the carbs and such, then you are probably killing off a small number of the bad guys, but also you are killing the good guys as well. Sometimes I just do not know which way to go with it either. I try and stay organic as much as possible and I do not consume much sugar stuff. But I do have carbs in my diet. Not a lot, but I do have some. You need to have some carbs in the diet, especially if you are underweight. Carbs also are what give you energy. You have to pick healthy carbs ( like sweet potatoes are a good choice). I also eat Organic squash cooked very soft and that is also pretty good. I add a small amount of butter to it and that also adds needed calories. One thing I was told by one doctor I use to see ( she was a holistic doctor) was that ALL foods you eat will feed bacteria. They eat on all of it. Yeast and stuff really feed off of sugar more so. I totally see where you are coming from though. But right now, I would try and limit your sugar intake as much as you can ( I mean table sugar). If you can eat some fruits, like apples peeled, or whatever you are able to digest, that is ok. You can also make smoothies which blend everything into mush and is much easier to digest. That is an option too. I guess you just have to see what you can eat that does not bother you as much. Hang in there.
09-23-2013, 12:40 AM   #15
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Taya, I hear you on the antibiotics. I've been on doxycycline for more than 10 years to treat rosacea and acne. It's a "low dose," but still, antibiotics destroy the "good" bacteria in your gut along with the bad. So it makes sense to me that prolonged use could cause a problem in your gut. Good luck in your quest for the truth.
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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Antibiotics caused my ill health - still undiagnosed after two years and need some help. - Possible severe SIBO or something else ?.
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