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Been Going on for 10 years. Awful Pain. Any Suggestions?


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#1 Erika055

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Posted 09 May 2017 - 09:27 PM

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Hello everyone. I am new here and seeing all the posts from other people has made me feel less alone. Well, I might as well start from the beginning. 

 

It all started when I was 8. I would wake up in the middle of the night with awful stomach pain. It felt like I was either being repeatedly stabbed in the abdomen, or acid was eating up my insides. I would just roll on the floor in agony, bawling, for hours trying to get it to subside. I have tried natural stomach pain relievers, like milk, baking soda water, peppermint tea, and even ibuprofen and pepto-bismol. Nothing helps. Fast forward 7 years. I have been dealing with this pain on and off. It comes and goes in waves. There will be weeks where it is relentless and everyday... while other weeks are ok and I only have a few attacks. I finally went to my doctor and told her about it. She thought it might be an ulcer so she gave me medications and sent me on my way. It helped for like a month and I thought that I was finally cured, but it came back. 

 

Fast forward a year and a half. After seeing no improvement, and realizing that my symptoms were only increasing in ferocity, I went back to my doctor. She said that I have abdominal migraines, which is a pretty much a pediatric affliction that goes away, but feels like a headache in your stomach. She gave me medication, but I never took it because I knew that wasn't it. 

 

Now to the present. After increasingly painful and worse symptoms, I changed to a different doctor. He did a bunch of blood tests, urine tests, stool tests, and an ultrasound. Not seeing anything wrong with me, he sent me to a Gastro-Intestinal Specialist. Yesterday I went to this doctor and he told me that I probably have IBS. So here I am. I don't know what to do. I am desperate, constantly in pain, and a little depressed that you can't really get rid of this thing. It is all about life-long management, and I have already tried to manage it for most of my life. I am only 18, but pain is part of my expected routine now. 

 

I don't really have IBS-C or IBS-D. My bowels are pretty regular and normal, I guess. I mostly just deal with excrutiating abdominal pain, and gas and constant bloating. I have gained weight every year, despite my constant efforts to lose it. I have lots of headaches, constant fatigue, sleeping problems, muscle pain, and a little depression. 

 

Anyone have similar symptoms? Ideas to help relieve pain? I am a newbie to the IBS world and am looking for all the help I can get. Sorry for the long post. I just had to get it all out there to give you a clear picture. Thanks to anyone willing to help or offer advice!



#2 everything

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Posted 19 May 2017 - 12:25 AM

I'm undiagnosed too, and get waves of pain, and flares that can last a week or two, then all of a sudden with no rhyme/reason I'm into dull ache mode for a week or two again.  I used to get up in the middle of the night and cry too, but I was in my early 40's.  Summers were always better than winters, and still are.  Are you willing to cut certain foods out of your diet to see if you can get any kind of symptom relief?  I've been working the diet angle for a couple of years now, it seems to help.  I've even attended the heal your gut summits, the microbiome summits, auto immune summits, food revolution, etc.  Nothing relieves the pain except for the strongest pain killers you can find, which have G.I. side effects, not worth it.  Not eating helps allot with symptom management, but I lose weight then, and I've never been able to gain weight.  One positive we both have is that we are not bleeding internally.  Lately I've been browsing Tom Obryans and Kelly Brogans work.  They are both anti gluten, sugar, and dairy.  Tom Obryan would say cut gluten, dairy, and sugar and you should start feeling better in about 5 days.  I eat allot of plants myself, avoid bread/gluten, dairy, and sugar.  I cheat a little mostly just to gain weight, but keep it to a minimum.  You could look into the eat right for your type diet as well.  You got one thing on your side, your youth.  Also, look into the SCD diet which still allows more foods you may enjoy.  All diet mods are usually strict but have great success, and some G.I. centers are using it with good fanfare, it's strict and people don't like that.  Your probably figuring out by now with the different diagnoses from the doctors that they just don't get it, genetics, eating habits, standard american diet, food intolerance/allergy, stress, exercise, even methylation all factors in gut health.  Now, for the gas/bloating you can try fennel or peppermint capsules or peppermint tea, if you get bloated right after eating that could be SIBO but it sounds like you have large intestinal bloating, you can try the low FODMAP diet to get some control over that symptom.  Another thing is food and symptom diary, I've got a 75 page document going.  If your like me, this affects your mood with bouts of irritability, and I don't even want to go out to eat, or eat with friends, I cook my own which is basically low fodmap paleo, shop farmers markets, and don't buy anything packaged, all from scratch.  I've learned to cook and make snacks ahead of time, and prepare for outings away from home so I don't get into foods that bother me as much.  Good luck!  


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#3 Helena

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Posted 19 May 2017 - 05:56 AM

My doctor said that IBS is like having migraines but they are in the gut. I have read that Ibruprofen doesn't work and it's not good to take all the time as it damages the stomach etc. I have also read that some people are given antidpressants like Amitryptline? because it works on the serotonin of which a  large percent 70-80% is produced in the gut, I think and it affects the brain/gut axis and seems to calm the pain signals in the gut? I have never been on it myself but have found over the last 2 years that I can control my symptoms on the low Fodmap diet.   Everything mentions good ideas above. Peppermint also helps the colon relax instead of getting tied up in so called knots. 



#4 Akn1965

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Posted 20 May 2017 - 10:34 PM

Low fodmap diet is a very nice diet plan for ibsers.I think with low Fodmap diet we have to take some safe drugs and supplements to be cured quickly.Otherwise we will be able to remain symptoms free only year after year.Low Fodmap can't support to all people.I decide I will be on this diet only for 12 weeks.Then I'll try another things.

Thanks.

#5 AlisonfromSickofIBS

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Posted 31 May 2017 - 12:15 PM

Hi there,

Have you been tested for dysbiosis (Candida/ SIBO)? This could be causing your symptoms and is really worth checking out.

This article goes into typical symptoms and testing: https://sickofibs.co...thing-part-one/

Alison



#6 Akn1965

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Posted 04 June 2017 - 12:23 PM

I have read the article many times.my symptoms don't match the symptoms in the article.
There is no facility of testing SIBO in my home town.
Thanks.

#7 oneillkat

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Posted 11 June 2017 - 10:19 PM

This sounds VERY familiar to me! I have struggled with random episodes of severe abdominal pain for a few years now. However, mine is usually associated with some sort of BM - sometimes diarrhea, sometimes just normal. The pain has gotten so bad at times that I have actually passed out from it. It's sometimes accompanied by sweating, dizziness, and nausea. I've developed severe anxiety because of it. I went to the GI doctor and was diagnosed with IBS. It is AWUFL and has ruined my life! I've missed out on so many opportunities because I am afraid of getting these horrendous pains while I am out. They are so unpredictable and random. I was prescribed Levsin to take as needed during the attacks, and I have to say that it does help a bit, but it makes me extremely tired and usually causes constipation. But it does take the edge off, and it works relatively quickly. I'm sorry that I can't offer you more advice, because I'm still trying to figure it out myself! I do commiserate with you, though, and I know how horrible it is. 



#8 sjtoole

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Posted 10 July 2017 - 09:06 PM

I have tried many different antibiotics, but the only combination that knocks my severe bloating down temporarily is azithromycin (250 mg) + doxycycline (100 mg) twice per day. Adding an Advil to this combination seems to help a bit also. If you haven't tried that combination, I would definitely give it a shot! (These are generally considered non-standard antibiotics for IBS, so you may need to prod your GI doctor to prescribe them for you.)

 

Have you been checked for h. pylori? I went to several GI specialists before one found that I had the infection.



#9 Erika055

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Posted 23 July 2017 - 02:16 PM

I have tried many different antibiotics, but the only combination that knocks my severe bloating down temporarily is azithromycin (250 mg) + doxycycline (100 mg) twice per day. Adding an Advil to this combination seems to help a bit also. If you haven't tried that combination, I would definitely give it a shot! (These are generally considered non-standard antibiotics for IBS, so you may need to prod your GI doctor to prescribe them for you.)

 

Have you been checked for h. pylori? I went to several GI specialists before one found that I had the infection.

I have been tested for H. Pylori, and the results came back negative. 



#10 sjtoole

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Posted 06 June 2018 - 10:25 PM

Working treatment - after 10 years of non-stop suffering!

 

I discovered by complete accident that when I take an over-the-counter antihistamine, fexofenadine (generic Allegra), my intense bloating symptoms decreased dramatically. They are not eliminated, but they are 70-80% reduced, and I can bend over to pick things up and can go up a flight of steps without severe chest pain.

 

None of the GI specialists I have visited over the past 10 years mentioned this as a treatment option, but there are several academic papers on pub med that discuss this, so it's definitely an up and coming topic. 

 

I am now going to add an additional non-drowsy antihistamine (loratadine) to the fexofenadine to see if it works even better.

 

Since none of the many antibiotics that I have tried really had this dramatic of a positive effect, I would definitely give the anti-histmaine OTC drugs a try, since they are cheap and very safe.



#11 sjtoole

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Posted 22 August 2020 - 12:32 AM

UPDATE AUG/2020: Bloating Issue Solved after 12 years of sufferingI finally stumbled on to something that puts a serious dent in my severe bloating! Non-prescription digestive enzymes

 

While searching the keyword "bloating" on Amazon, I discovered that many people had great luck with non-prescription digestive enzymes.

 

There are many brands available on Amazon and at health/vitamin stores, and they all pretty much contain the same enzymes in different combinations. (Ex. Protease, Peptidase, Lipase, etc.)

I have had good luck with a brand called HUM Flatter Me, available on Amazon.

 

They are basically the same enzymes that your stomach and pancreas produce normally, and are relatively cheap.

 

I take them before and immediately after I eat a meal, and they DRASTICALLY reduce my bloating.

 

My H. Pylori infection may have damaged my stomach's ability to produce these enzymes. I am really disappointed that none of the GI specialists that I visited even suggested this as a possible treatment!

 

The anti-histamines still help, but not nearly as much as the digestive enzymes.

 

If nothing is working for you, order these from Amazon or buy a bottle at your local nutrition /vitamin store and give them a try.







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