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I need doctor recommendations from people who were successfully cured from SIBO using antibiotics (and didn't relapse) (PLEASE READ)

SIBO antibiotics Rifaximin

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#1 ojfwoefjwpeof

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Posted 30 November 2019 - 06:27 PM

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Hello.

 

I'll try to keep this as brief as I can, so you won't get bored and stop reading. Please try to read it and reply, because I am in terrible desperation! I'll start out by explaining the main purpose with my thread, then I will share some of my back story details later, in case you feel like reading that as well.

Since August this year I have been suffering from chronic acid reflux and several other symptoms. I have undergone colonoscopy and upper endoscopy and also had a SIBO breathing test which came back positive. I have high readings of methane and a some hydrogen.

 

I am not getting any help from the doctors in my country and I now have to look for help in the United States or some other country. Please help directing me to someone who can help me, but that fits the criteria for what I am searching.

 

I am looking for:

 

* A SIBO literate doctor that can treat my SIBO and I want the doctor's key method for treating SIBO to be antibiotics (preferably combined with necessary diet adjustments and supplements if needed). If you do not share this opinion I fully respect that, but please also respect mine.

 

* The doctor should be a real licensed doctor / gastroenterologist, and not only a herbal specialist / dietitian / nutritionist dealing with strictly natural SIBO healing solutions or homeopathic medications, probiotics etc.

 

* The doctor must have the attitude that SIBO can be cured, not that it always comes back. Therefore it is VERY important that the doctor is willing and competent in knowing all the necessary diagnostic detective work required in finding out what caused my SIBO in the first place, in order to address the possible causes and keep the condition from recurring if successfully treated.

 

* I would prefer if you personally, or close friends of you, has been successfully cured, without relapsing after treatment, by this doctor.

 

* I am in Europe and not in the United States, but I am ready to travel there for the treatment, because no SIBO literate doctors exist in my country (more about this in the longer text below). I have access to a house I can stay at for free in Oklahoma, so would be perfect if there is a good doctor in any of the nearby states, but I am 100% willing to travel to any state in the whole country for a successful treatment. I am also willing to travel to any country in the EU. So please, any recommendations that fits my other wishes are of interest!

 

* About medical treatment in USA specifically: Since I am not an American citizen and lack U.S. insurance, I realize it will be an expensive story, but it is worth it to me, because the condition is about to do me in, physically and mentally. I cannot afford a place like the Mayo Clinic, but I recently underwent a colonoscopy and upper endoscopy with biopsies etc at a gastro clinic at a large hospital in Oklahoma City and it costed a fair bit of money but since I am so-called self-pay and paid for everything up front in cash and they did not have to deal with any medical insurance, the cost was still reasonable. Unfortunately I felt this clinic was not enough skilled with SIBO, so I have to find something else.

 

 

Now, here is my longer story (feel free to read and ask any questions you want):

 

I have for several years suffered occasional constipation / loose stools. I suppose during the most recent 2 years or so, it got worse. I would often be constipated for 2, sometimes 3 days, and once I finally went, it was often very loose and pale. The pale poop went on for quite a long time, but got better in periods, and so did the constipation / loose stools from time to time.

 

About a little more than a year ago, I felt the constipation and loose stools got worse. My house doctor prescribed a medication (which was not a laxative) that would increase bowel movements and also make the poop less loose. It worked quite well, for a few months.

Then I started having a dull stomach ache when I woke up in the mornings (that would go away after I got up). My doctor speculated I was suffering from IBS. I was also losing weight and found it hard to gain.

I kept requesting a colonoscopy / EGD but he just kept saying let's wait a bit longer, and see if it gets better first. My country primarily uses public healthcare which used to be good but because of various reasons, it's extremely flawed and non functional today. It's hard to get treatments and at best you can get prescription drugs. Very little time is devoted into the patients and many badly sick people with cancer die before they even have a chance to start any treatment.

 

I was getting ready for a U.S. trip (I go there every year) and the stomach pains had been a little worse lately. I also had a weird hunger like sensation all the time, even right after eating. I was considering cancelling my trip, but the doctor encouraged me to go, and prescribed Omeprazole. He said my abdominal pain might be caused by excessive stomach acid. He told me to eat that during my U.S. trip, along with probiotics.

 

A day before the trip I had been constipated for a couple days, and the medication I had been taking for it didn't seem to help. I still had the hunger pangs all the time. I went on the trip anyway and by the time I landed I still had not been able to poop.

I bough some OTC laxatives which didn't help either. I then bought magnesium citrate and drank the whole bottle, still nothing. After an additional two days my stomach started hurting more and more and I was worried I had some serious intestinal obstruction, so I called a gastrointestinal clinic at a large hospital and they scheduled me for an appointment the next day. This was a Friday and they immediately put me on a prep diet to perform a colonoscopy and upper endoscopy after the weekend. The super strong laxative finally made me poop. They found no visual abnormalities, hernias, inflammations etc. They took biopsies for Chron's disease, H. Pylori and more and said everything looked fine.

 

My U.S. vacation went on. For about one week I did take Omeprazole and probiotics daily like my doctor at home had adviced. After that I stopped taking it, because I still had the stomach pain and hunger pangs and I didn't feel it was doing any good.

A couple of days later I was back home, this was early August. I then suddenly, all of a sudden, developed acid reflux. It was literally out of the blue. One day I didn't have it, the next I did.

 

I went back to the doctor who referred me to a gastro clinic. They couldn't see me until a month later. That month was horrible. The acid reflux was completely chronic, from day to night. I was taking Zantac (Ranitidine) at first, then I switched to Pepcid (Famotidine) because it felt like it was working slightly better. I had to take a sodium bicarbonate based fizzle type powder mixed in water several times a day as well, especially at night when the reflux is worse.

 

Early September I met with the gastroenterologist and he speculated immediately that my reflux is due to anxiety and stress (because I do have a history of an anxiety related disorder). He also mentioned dyspepsia, IBS, etc. He wanted me to start taking proton pump inhibitors again, without even finding out if my stomach acid was high. I was against this idea, because I am aware of the dangers of long term use of PPI's. At the same time I am very concerned about what this reflux is doing to me internally and possible other medical conditions it can lead to.

He finally said he would be willing to do another upper endoscopy, which I said I would like. He did this a week later and I am still waiting for the results (it takes a very long time for some reason).

I came back and saw him again a few weeks later, and I had by this time read about SIBO and mentioned this. He first said he didn't think I had that because I would be passing more gas, and the condition is rare etc. When I mentioned the common lactulose breath test, he said that test is not offered in my country anymore because it's not reliable enough.

Then he suddenly said well it's not impossible you suffer from SIBO because many people with IBS do. He finally said he was willing to prescribe me a round of Rifaximin pills that I can take if I think I have SIBO, but he didn't think it would do any good. He also said he would let me have a pH test to check if my stomach acid level is too high and how much is leaking up in my esophagus.

I started the Rifaximin, two 550 mg tablets a day, for 2 weeks. At first no difference, but after 10 days or so, I noticed improvements. The reflux was getting less severe. At the end of the antibiotic treatment, it was very low. My throat still burned a lot (and still does) but I speculate that is an inflammation caused by the stomach acid.

I had the 24 hour pH test, but since the reflux had improved, I was not refluxing so much so I think it was pointless in the end.

 

The doctor has scheduled me for a new appointment December 10 where he will evaluate the probably pointless pH test, plus hopefully results from the latest biopsies he took during the upper endoscopy in September.

 

While I was waiting on this, I ordered a lactulose breath test from England, and I got the result back saying it was positive. This was exactly 1 month after taking antibiotics, so even after being freshly treated with Rifaximin, it was still positive. I believe some of the bacteria was killed, but not all of them were eradicated. I suppose a combination of Rifaximin and some other antibiotic would have possibly be more effective. I am worried the readings on my SIBO test would have been even higher if I had done it before the antibiotic treatment.

 

As of one week ago, the acid reflux started returning. It is for the past few days really bad again and I have been forced to start the antacids again (Pepcid). I cannot sleep at night unless I sit almost fully upright. I also have the strange hunger pangs again which goes away for a day every now and then, then returns.

 

I am going to bring this test result back to the doctor on Dec 10, but I already know he will not acknowledge it and he also do not seem to know anything about SIBO. He still insists he wants me to basically live with it, eat proton pump inhibitors to reduce the acid reflux symptoms, and maybe make some dietary changes.

 

I have spent hundreds of hours researching SIBO during the past months and tried many food eliminations / experimentations. Right now I am attempting a low carb FODMAP type diet but it does not do much good so far. The many dietary tips online are extremely contradicting and many times you are told to eat / not to eat something without any explanation why. One moment it says try to limit carbohydrates, then the next it says eat rice and white bread. Some people say try to eliminate as many carbs as possible, only to say the next moment oh you can eat potatoes, onions, etc.

I also am losing weight rapidly. When I cut carbs out, I cannot keep the weight on. I am now 132 pounds only. Even when I ate carbs and lots of fat I couldn't gain. My latest bloodwork was from June (before the acid reflux started) and I already then had decreased Vitamin D and iron. I don't even want to imagine what it is now.

 

I have also spoken to many other sufferers in my country. They all say no doctors will help them. Some of the doctors will not even acknowledge SIBO as a real condition.

I considered seeking private healthcare from a doctor where I would pay everything out of my own pocket, without the help of the government subsidized healthcare facilities, but I couldn't find a single doctor that knew anything about SIBO.

I finally got in contact with a nutritionist who seemed very aware of SIBO and the best treatments. She told me me don't waste your time looking for doctors in this country, because there are no SIBO literate doctors here.

 

Right now I feel horrible. Not just because of the physical symptoms, but this is extremely emotionally draining. I already suffer from anxiety before I got this sick, and this is about to do me in. I have fallen into strong depression because of this thinking I will never be able to live normal again. If I'm not helped soon I am just going to give up. Everything feels extremely hopeless and I really see no light at the end of the tunnel. I have written so many clinics, doctors, etc and they all turn out to either not know anything about SIBO or have the wrong idea on how to treat it.

 

I still don't know what caused my SIBO.

Was it my crappy bowel motility and habit of eating a lot of carbs?

Was it the combination of suspected low stomach acid, combined with Omeprazole and probiotics which contains millions of bacteria which is found in foods I never have eaten in my lifetime?

I have so many questions, but no doctor willing to investigate what is wrong or what caused me to get this sick.

 

I have now decided that I am going to seek help abroad. I am thinking the United States because I am married to an American citizen and we go there every year, have a place to stay for free there etc.

 

I now need someone to give me recommendations to a doctor that has the approach I explained in my opening of this thread:

1. TAKE TIME and sit with me and properly go through the necessary medical diagnostic detective work through tests, medical history, analysis etc. to find out what the probable cause was for me developing SIBO

2. Figure out how to break the cycle so if SIBO is cured, it will reduce the risks of it returning

3. Put me on appropriate diet to prepare for antibiotic treatment to eradicate SIBO

4. Be experienced with which combination of antibiotics will work best for me, and administer the correct dosages and for how many days I should eat it

5. Decide a suitable diet before reintroducing normal food again, and if something in my diet should be avoided in the future to reduce risk of relapse

6. Any supplements or other medications that might be benefitting, depending on what he/she believes caused my SIBO

 

If you read all of this, thank you very much for your patience. I appreciate to hear any recommendations to doctors that operates the way I described above, and that has had success in curing SIBO sufferers that didn't relapse later.

Your help would mean so much to me, you have no idea.

 

Also feel free to ask any questions if you need more information or if you want to share your stories / experiences with this horrible condition.



#2 beatingIBS

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Posted 05 December 2019 - 03:48 PM

Hello.

 

First I'm sorry that you're having so much symptoms that IBS can cause.

And ofc having an anxiety related disorder doesn't help. As you know IBS feeds anxiety and anxiety feeds the IBS in a negative cycle.

 

Anyway I'm not in the US nor from it so I can't help you specifically on your request.

 

However from my personal experience, I think it'll be close to impossible to find a gastroenterologist that is the kind of expert that you expect.

I think in all honesty your best bet is you work with a diversed team.

 

So you should find a nutritionist that is specialized in gasto problems and find a good gastroenterologist so that you all three can work together. So in this way you can suit your diet to the treatment you'll take and vice versa. In this way you'll have a much more positive effect in terms of treatment.

 

Finally don't expect silver bullet treatment with a few days/weeks "cure". It'll take time for sure to get better even doing everything right.



#3 Oilersfan

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Posted 12 December 2019 - 06:43 PM

OP,

 

I feel your pain and hope I can offer some advice and stick with you while we both get through this. I read through your story above and it sounds familiar in some ways. 

 

I have been having stomach issues on and off for the last 3-4 years and I was diagnosed with SIBO just over a month ago. Its been hell sometimes for sure but I do have good days too. Over the years I have had many tests but they always come back negative. Ultrasounds, colonoscopy, H.Pylori breath test, Gallbladder scan, blood tests, urine tests, stool tests, CT scans, X-rays, Sibo breath tests, food allergy tests. My family doctor and my GI doctor always just say "IBS, try this medicine and see if it works". I have had many symptoms like frequent heartburn, bloating, back pain, stomach pains, diarrhea and constipation, gas both burping and farting. I have tried many anxiety meds that gave me terrible side effects and I have tried stomach acid reducers and stomach spasm drugs. All to no avail. I finally went to a naturopathic doctor that did the SIBO breath test and it came back positive for Hydrogen SIBO. Im now in the treatment phase.

 

I have also been researching SIBO heavily the last few weeks and I agree that its very frustrating with all the conflicting info. The first thing to remember is that there is no one definitive cure for it but there is light at the end of the tunnel. Some people get rid of it in one treatment, others take years of trying different things but most of what I have read is that it can be done and its very important to stay optimistic. It may take time but you will get there. Its just a matter of finding the right help and plenty of self help as well. 

 

I also wanted to note that I smoke marijuana (legal in canada) and I like to quit from time to time. It seems like every time I quit my anxiety and stress are through the roof and its followed by a return of the stomach issues. This leads me to believe that stress is a major factor in aggravating SIBO and IBS.  

 

Causes of SIBO:

This is a big grey issue in SIBO sufferers.

 

Causes can include:  Stress/anxiety, poor diet, alcohol, abdominal surgeries, overuse of medications (including antibiotics), previous food poisoning, overuse of probiotics, plus many others. No one person seems to have the same root cause and I believe it is different for everyone. Personally, I root my stomach problems back to some food poisoning a had from eating wild game a few years back coupled with Generalized anxiety and stress. It seems to me that a stressful episode combined with poor eating and drinking alcohol everyday brings it all back and then its usually 1 to 4 months trying to find relief again. The unfortunate part is that no doctor can really tell you how you got it and its really up to you to figure out what "probably" caused it and move on to treating it and getting better. 

 

Stress and Anxiety:

This is a big one in my personal opinion.

 

Stress and anxiety can really cause some havoc to your body both physically and mentally. I have had anxiety all my life and my stress levels seem to increase greatly after having my first and only child a few years ago. One of the main physical effects of stress and anxiety is stomach problems weather it be nausea, pain, bloating, motility issues or acid problems (just to name a few). Its really important to try and have a good mindset even if you feel crappy because the stress of the stomach problems will just create a vicious cycle (stomach problems stress you out and the stress gives you more stomach problems). I found myself in this cycle for an entire month back in October and I really think it made things much worse. Find a bunch of ways to help you with stress and anxiety, the more remedies the better. I take walks, hot baths with some relaxing music, exercise (nothing too strenuous while having stomach issues as it may make things worse), Acupuncture, see a therapist, massage, the company of some close friends or family, quiet meditation, deep breathing exercises and even the odd Ativan when I have a panic attack or anxiety attack (i dont recommend frequent use of pharma drugs though). Specifically with anxiety, try to eliminate those situations that make you the most anxious if at all possible. Make your friends and family aware of your anxiety issue so they understand when need to duck out of a situation or need to talk about something. You need to be able to excuse yourself from any stressful/anxiety induced situation if even just for a few minutes and get your mind back on track and relax. Getting your mind settled is really step one to solving stomach problems in my opinion.

 

SIBO treatments:

As you have probably already researched, there are 3 options (not including diet changes) to cure SIBO:

 

Antibiotics. Here in canada you need a doctor to prescribe them and I was fortunate enough to have my naturopath relay my SIBO test to my GI doctor. While the GI doctor didnt specifically acknowledge that SIBO is a real ting he did did agree that RIFAXIMIN can be used for IBS and often it has good results so he gave me the prescription. Im on it for 2 weeks, 3 times a day and I have seen some improvement after being on it for 8 days. I believe the most common for SIBO with predominant Methane is both Rifaximin and Neomycin together but I have Hydrogen SIBO so im just on Rifaximin. 

 

Herbal. I tried this for a week and half and got impatient because its a 6 week protocol. I was seeing some improvement for sure but got a stomach flu 12 days into the treatment and had to stop the supplements which essentially send me back to square one. I was taking Berberine, Biocidin, Cinammon and Grapefruit seed extract for the first two weeks and was suppose to move on to Biocidin, Neem and Garlic for weeks 3 and 4. Then back to the same stuff from the first two weeks for weeks 5 & 6. On top of that I am taking L-glutamin and Omega D3 Fish Oil to repair any damage to my intestines. I felt like all the supplements was a bit much (12 pills a day) so I wasn't liking it one bit. Plus I was feeling really weird sometimes and Im sure my stomach wasn't liking all that weird stuff so. At least the antibiotics is only 3 pills a day and I have had minimal to no side effects so far. Im still taking the L-glutamin and the Omega every day and I plan on going back to the Grapefruit seed extract in a smaller dose when the antibiotics are done. 

 

Elemental diet. I cant speak much to this. Both the naturopath and GI doctor didnt recommend it although I have heard it usually works. Gross drinks and nothing but for two weeks, no thanks!

 

Prokinetics. This is more of an after treatment thing as far as I know but they help fix motility (movement of food through the intestines). Im just taking Ginger pills and ginger tea and hoping that works so I dont have to get a prescription for more drugs. 

 

 

Naturopaths:

 

While I do think these doctors have some merit be careful and do lots of research before they talk you into anything. I had some bogus testing done that was very expensive and medical doctors wont really acknowledge a test from a private lab so you will be basically be going off what the naturopath says weather its good advice or not. These naturopathic doctors are private business so most of the costs come from out of pocket and I think they want to keep you coming back so they will push as many tests and supplements on you that they possibly can. I would stick with just a SIBO test to start unless you really believe you have food allergies, candida or parasites. Most of their testing isn't totally proven so its up to you wether to believe it or not.  I do believe the herbal route works for SIBO but it feels like a long haul of lots of pills and its not guaranteed to work. 

 

 

Diet:

This is the toughest one and probably the hardest and its largely up to the individual person to figure out what works. Everyone seems to be different in this regard and its mentally draining not eating the things you like. The best you can do is try one of the recommended diets (Paleo, Fodmap, Sibe specific diet). Keep a journal of what you eat and try your best to find the things that bother you the most. I haven't seen a dietician but that would also probably help. I have heard to eat normal while on the antibiotics so the bacteria is active so thats what I have been doing. I find dairy and processed foods are the worst when my stomach is acting up but I can eat most other things. Too much garlic can be bad but I tolerate bread and gluten in most cases as long as I dont overdue it. When my stomach is feeling good after a month or two I can pretty much eat or drink anything. 

 

 

Whew, thats a lot of info for one day but I hope it helps someone and I hope there is some response here. Im always looking for success stories and advice along the way. I will try to post some links tomorrow of the most helpful websites and articles I have found regarding SIBO. 

 

In my opinion, do whatever you can to get your stress and anxiety levels down, try an elimination diet for a bit if you can and try to find some food triggers, then do a two week run of the two Antibiotics I mentioned above coupled with some ginger. If it doesn't work, try another run of the antibiotics or the 6 week herbal regiment. Im halfway through the treatment and feeling some improvement but I know it will take time for everything to heal up again. If this doesn't work Im going to try the herbals again and then back to the antibiotic if I have to. Hopefully you can get access to the antibiotics or the herbal stuff and get on route to being healthy again. Keep your head up. I will check this forum every day if I can and I know we can get healthy again with time and positivity. Cheers. 



#4 Oilersfan

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Posted 12 December 2019 - 07:54 PM

Just to add to my last post,

Probiotics seems to be another Issue with sibo. Many conflicting reports. In my mind it seems counterproductive to add more bacteria to a bacteria problem but it seems like it works for some. When I had stomach issues 8months ago I took probiotics every day for a month and it seemed to help then but I was also on the fodmap diet, getting regular acupuncture and exercising a bunch. I still havent decided if I will take them after Im done the antibiotics but I have some probiotics already so Im still on the fence about when and if I should to take them.

Links:
Sibo specific diet http://www.siboinfo....e_sept_2014.pdf

BlogS about Sibo
https://feedmephoebe...ms-and-testing/

https://victoriaalbina.com/sibo/

https://centrefordig...ediseases.com/#

https://medium.com/@...ibo-c091bb5aa00

https://sibosurvivor.com/

https://www.sibosolution.com/schedule/

https://sibocenter.com/

https://www.siboinfo.com/



#5 ojfwoefjwpeof

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Posted 01 January 2020 - 08:19 AM

Hello.

 

OP,

Thank you both for your responses, especially Oilersfan for that very extensive and informative reply.

First of all, I am so sorry for responding so late, but my health condition has been a nightmare since I wrote the original post; more (serious) symptoms, two trips to the ER, and some horrible news. If you feel like reading what has happened to me since my last post and what else has been found out about my health, please read on.

 

I went back to the gastroenterologist on December 10. He told me the biopsies had shown a chronic inactive gastritis in my stomach. He said this probably has been there for a long time and not something that happened recently. I don't know what caused it. I read it's usually caused by Helicobacter pylori infections (none of the other risk factors are relevant in my case). I did suffer a food poisoning in Egypt 10 years ago. I don't know if that had anything to do with it, but in either case they have done biopsies on two occasions checking for Helicobacter pylori and it's definitely not there now. I don't know if it can go away by itself, or if it's likely to have been missed on two biopsies, or if perhaps I have eaten antibiotics sometime during the last 10 years for something else (I really cannot remember) that just happened to kill the bacteria in the process, after they had already caused the gastritis.

 

Furthermore, biopsies showed my stomach walls have a cell change which is called an intestinal metaplasia. The doctor didn't explain much about the condition, but I have after the meeting learned it's basically something that could potentially be a precancerous cell change. He said he needed to do a new upper endoscopy a.s.a.p. to find out if or how often this cell change needs to be followed up on (with regular EGDs, to make sure a possible development into stomach cancer is caught early). He scheduled the new endoscopy for December 27. He also said he didn't think this had anything to do with my current symptoms. I then presented the positive SIBO test result to him. He is still ignorant about SIBO, but after I asked, he agreed to prescribe more antibiotics. At first he wanted to ordinate the exact same dosage (2 x 550 mg a day for 14 days), but after I showed him the widely available dosage recommendations of Dr. Mark Pimentel, he finally agreed to ordinate me 3 x 550 mg a day for 10 days in combination with 2 x 400 mg Flagyl (Metronidazole) - he would not prescribe Neomycin, but I managed to get that from a U.S. friend so I technically could self medicate myself with whichever combo I want to, although I am a bit hesitant about Neomycin as I heard some bad stuff about it. I am also not sure how long I should be eating the antibiotics, as I now have spoken to many methane predominant SIBO sufferers who had to eat antibiotics for 30 days straight or more to completely eradicate the bacteria. Since Rifaximin comes in packages of 56 pills, and I only ate 28 pills last time, I still got quite a bit left. I then will have 56 more pills, so I could eat it for 28 days straight if I wanted to. The other two drugs I got enough for about 20 days each of. Not so sure I should decide on this without consulting with a doctor, but I don't know how to find a doctor that is SIBO literate enough to tell me what to do.

 

Like I said earlier, my SIBO test had quite high readings of methane (and some hydrogen), but this was done just a month after the initial Rifaximin round, so I am thinking that my readings would probably be off the chart if I did them now when all symptoms are back. I think I will try to do a fresh SIBO test to get some more accurate numbers, before I start the antibiotics again.

In any case, I still need to get my motility going before I do anything else, as I'm extremely constipated lately and that needs to be addressed first before I even attempt any SIBO eradication.

 

The doctor also said he wanted a CT scan of my stomach (something which I in hindsight have learned is probably to see if the metaplasia has developed into cancer, as I have realized many of my symptoms points to that). I was scheduled to do those x-rays on January 13th.

The doctor also ordered some fecal tests to check the calprotectine and elastase status in my stool. The calprotectine is to determine if my colon is inflamed, and the elastase is to find out if my pancreas is functioning properly. He also ordered new bloodwork to check for various possible insufficiences as I'm speculating my weight loss and overall poor health also could have to do with fat/nutrient/vitamin malabsorption.

These tests have since returned showing that I am low on iron (despite eating so much red meat lately). The calprotectine showed I had no inflammation, while the elastase was borderline of showing an abnormal pancreas. The doctor said these tests can sometime show inaccurate results, so he asked me to redo them. These came back too, but the doctor has not evaluated them yet, but second time it was the exact opposite result -- the calprotectine showed numbers indicating an inflammation, while the elastase was within normal range. So I don't know what to think!

 

Anyways. A few days after that doctor visit, I noticed blood in my stool. Not fresh, red blood, but dark coagulated lumps of blood. I had been noticing the poop being darker than usual for a couple weeks but I assumed it was due to something I had eaten like beets, but given the fact I had once again had to go on a no-carb diet (just meat, fish and eggs) for the past week, I knew this time it was blood. I went to the ER and they ordered a quick sigmoidoscopy (which is basically like a light version of a colonoscopy where they only check the first part of the rectum). I had this done a couple days later, and biopsies were taken from my rectum. I watched the screen during the procedure and saw small red marks all over the colon. The doctor said that is a sign of an irritated colon but not necessarily an inflammation. The biopsies came back a few days later and said there was no inflammation in that part of the rectum anyway, so the rectal bleeding must come from further up the GI tract.

 

I managed to see a dietitian in the gastro clinic's office and she said we need to get your motility going a.s.a.p. and prescribed a new laxative which is supposed to be stronger than what I have been taking.

 

My gastroenterologist also called me the same day after finding out about my rectal bleeding and said he wanted to go ahead and perform a new colonoscopy at the same time as my already planned upper endoscopy (on Dec 27).

I came to do this, and then doctor turned out to be home sick and I was given another doctor I had never met. She did the procedures on me and said the colon looked fine and there was no need for biopsies. She did take the biopsies from my stomach that will evaluate my metaplasi cells.

 

I have since then had more blood in my poop. Yesterday it was really dark and red and I went back to the ER hoping they would do a CT scan right there, but they refused. Instead they said they will schedule me for some type of camera procedure where I swallow a mini camera that will travel through my whole system. That will give them a clearer view of my small intestine, which is the only part of my GI tract that hasn't been scoped. But this won't happen until earliest a month or more from now. They don't seem overly concerned about me having chronic internal bleedings for over a month. The did blood tests that showed I wasn't seriousiously hemorrhaging!

 

Before everything really went downhill, I actually scheduled myself for an appointment at a functional medicine clinic, as I want to do the Heidelberg test which checks the pH level in the stomach. This is said to be the gold standard in measuring the stomach acid levels in the actual stomach, yet I cannot find much information about how reliable the test is. The reason I had to go with a functional medicine clinic is due to them being the only clinic in my country that does the test. I felt it was necessary to figure out if I could possibly be suffering from low stomach acid and that could be causing my slow motility. The earliest time they had for me was January 27.

There is also some mandatory, inescapable super-duper health analysis involved (which of course is expensive) they are forcing me to do. All the conventional healthcare procedures so far have been covered by the public healthcare in Sweden, but the functional medicine place will have to be paid out of own pocket money. I worry about they are a bunch of snake oil doctors that will just try to sell my supplements. I don't mind spending money on my health, but I don't want to spend my savings I worked so hard to save up, if it's going to be spent on scammers. What if they tell me I suffer from this and that, just to sell more useless products.

 

So right now I am just going around here waiting on results from the stomach biopsies, Heidelberg test, the miniature camera through my small intestine and to hear back from my gastroenterologist to evaluate all these results. I doubt I will hear from him before all test results are back. This is extremely stressful for me as I'm worrying the metaplasia has already turned to cancer. Chronic acid reflux, stomach pains (which has been worse recent week), dark coagulated blood in my stool and involuntary weight loss.

Up until now it has been very hard to manage my anxiety with all physical symptoms, and now next to impossible while going through all this added distress. I have been given two new medications to relieve me of some of the anxiety and depression this is all causing, but I have been too scared to take them as they both have horrible physical side effects listed under "common" in the pamphlet. They also both cause constipation, something I really don't need more of now. The new laxative is so far not very effective either.

 

Sadly I don't have any friends for many years, so there is not anyone around to offer me emotional support. All I have is my closest family members and most of them are either not too involved in my life or do not understand anxiety. Some of them even get annoyed about me suffering from anxiety. My only support is really my mother but I am feeling I am emotionally draining her too while talking nonstop medical stuff... :-(

I simply cannot turn my mind off, as much as I'd like to, the toxic thoughts are just too overwhelming and I am worrying I'm already standing with one foot in the grave here.

 

Sorry for the wall of text, I don't really know what good any of this will do by telling it to you all, I guess just needed to get some of this off my chest. Thank you for reading if you managed to get through it all to the end.



#6 beatingIBS

beatingIBS

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Posted 24 February 2020 - 05:42 PM

Hello again.

 

Regarding the pill cam exam is a very low risk exam so it should go fine. If the calprotectin value you had is high it means that basically you can have crohn's disease or some other disease that is causing the inflamation. The pill cam will try to find the inflamed/bleeding parts of your intestine to see that. Of course it can just be a mild inflamaton and that is consistent with IBS as sometimes IBS is characterized by a low grade inflamation. I know that you may not believe in what I will say next but this inflamation is directly related to your mind. There is no concrete evidence yet but most of the times these symptoms are caused by extreme stress/anxiety.that have symptoms caused in the intestine. As you should know the enteric nervous system is considered to be one's second brain.

 

 

 

Anyway I hope you're better now. Let us know your progress and if need to clarify something please ask







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