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New here! Need help! PI-IBS?! Feel like my life is over :(

Ibs ibs-c ibs-d pi-ibs ibs-a post infectious ibs

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#1 Nycgirl516

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Posted 02 September 2016 - 08:23 AM

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Hi!
Have been suffering for a few months now but discovered this site while not being able to sleep
Never had the best digestive system. Sometimes just a rumble in tummy and then oh no! Have to get to a bathroom. It was not very often. Would feel better after I went once or twice. Popped an immodium or 2. Never disrupted my life
I would say January I started to get more constipated. Very uncomfortable and would not go for a few days. Then would need a bathroom all of a sudden because body would decide to push everything out. This went on until May.
My daughter was home sick from school for awhile. Was nauseous every morning. Never threw up. But wasn't well. She got better and then my stomach issues got worse!
So much diarrhea for days. And my entire body felt sick. Had brain fog, panic attacks, suicidal thoughts. It was bad and scary. Ended up in er. Had pain in my right rib cage area. They did blood work, urine, and CT but found nothing. Said I probably had an infection. My neutrophil count was slightly high. Released.
Went to GI Doctor. He did stool test. Found nothing. I had lost about 15lbs at this point. Stool tests couldn't find any parasites or anything like that. He told me I could afford to lose a few pounds because I wasn't skinny. Weight loss wasn't a concern. He did suggest florastor which I started taking. Diarrhea and loose stools every single morning. Most was mud like poop
Went to second GI, he did more bloodwork for thyroid and did food allergy. Nothing shows up. He prescribed viberzi but the diarrhea seems to subsided
i was having more form stools. I was going every morning. I felt like I wasn't going enough. Not quite constipated but it wasn't feeling completely empty
A few days ago went back to stomach cramps and diarrhea. Last night the cramps and then diarrhea. This morning cramps and diarrhea. It was mushy mud poop today
I'm at the end of my rope. I have been out of work because of this since June 1. Have to go back on sept 14. Live in NYC and take trains. Terrified of going back and getting stuck on a train and not being able to use bathroom.
My doctor thinks I had a stomach virus or infection and then it led to post infectious IBS
Please help me :( I was supposed to be training for the NYC marathon. I feel like my life has fallen apart.

#2 Nycgirl516

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Posted 02 September 2016 - 11:59 AM

Still hoping for any answers or replies :(

#3 Balt72

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Posted 07 September 2016 - 06:35 PM

I was the same way in 96 worked 4 world trade took E train in everyday then did a B line for bathrooms. Been they way till August this year someone here Tessa told me about Low FODMAP Diet I looked it up and started it now I have 2 Bam a day last 3 days they where firm no mush or Liquid . I stopped taking Imodium just take Vitamins and stay away from Gluten and Garlic and Onions hard for a Italian believe me but I have very very minor cramps hear and there soft stool once and a while but other then that I'm a happy man.... Try that diet hope it helps ya

#4 RubyinMD

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Posted 07 September 2016 - 10:29 PM

Still hoping for any answers or replies sad.png

I don't have any answers but I can relate to almost everything you said.  I used to take the train into DC for work (I work in a MD suburb, about 15 miles from home now). I'd like to go back to DC but I just can't risk the train ride. i can also relate to the not running. I used to run every day but haven't run in months b/c of this stupid IBS. I want my old life back too!

 

I'm in the middle of my worst flare right now. I've never had problems at night but here I am - still up at almost midnight. I'm so disappointed that amitriptyline didn't work for me. I think my doc is going to put me on verbezi next but i hate taking "new" drugs.

 

Hoping for remission for all of us.



#5 lisaK

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Posted 18 September 2016 - 06:17 AM

Dear NYCgirl- 

I'm 49 years old, have had IBS since I was 18.  Doctors never could help me...but I could tell that I had my attacks just after a stressful event.  Anything that scared me, or that was uncomfortable, I would have an attack just after the event.  I am not sure if my story can help you, but I'll try and hope.

 

So, I discovered that my anxiety about life would cause my gut to tense up.  I would be constipated from the tension in my gut.  I would not have a bowel movement for days...then after the scary event, (like having to speak in public, or travel somewhere, or have a date with a guy, or anything at all that I considered stressful, which at that time was most things) So after the event was over, I would relax and then in the middle of the night, I'd wake up to cramps that felt like stabbing pain.  Eventually, I'd had to run to the bathroom and I'd have diarrhea with more cramps.  sometimes I'd be there for half an hour or more.  Then after the attack, I would feel exhausted and usually have to cancel anything for the next morning as I felt like I'd been hit by a truck.  But soon, I'd be fine and life would resume like nothing happened.  

 

after 10 years, I got into bible study (I'm not telling you to do this by the way, just keep reading...)  I learned about God's love and I gave my life up to the Lord so to speak.  My IBS was gone for years.  Basically, what I think happened, is since I had faith in something, my fears and anxiety decreased significantly, but then, I moved to Australia with my family 2 years ago.  Even though the move was amazing, it was much out of my comfort zone.  I started having attacks again, but now I also have seizures with them.  I pass out, and my husband makes sure to keep me in the bed until I have the seizure since I have fallen and hurt myself badly.  I even broke my toe once falling while on the toilet.  

 

I have reason to believe that for me, it's mostly my mental perspective that causes me intense anxiety and possibly greasy food.  When I eat chicken wings or greasy food, it increases the likelihood of an attack, and also I recently discovered a connection to vitamins.  I stopped taking the 20+ vitamins I usually took and I have not had an attack since.  It's been a month without an attack now. 

 

So, for me that biggest thing was having a healthy perspective on life.  I had to take a close look at my fears, and conquer them.  I am a very spiritual person, and I find that being in a state of Love and bliss makes my IBS less likely.  When I'm trying to control things too much, or let other peoples opinions and interference in my life get to me, I get more likely to have an attack.  

 

Maybe look to see if you are that way too and maybe we have more talks about it.  I have found that Wayne Dyers "Ten Secrets for Success and inner peace" was a profound help to me, and more recently the Isha Foundation has a 7 day online course that really changed my perspective in a way that has completely eliminated stress altogether.  If you have an open mind, and want to heal your inner pain, I would encourage you to look into that.  Good luck to you, and feel free to ask me anything.  I'm happy to help in any way I can.



#6 amineamine

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Posted 24 September 2016 - 05:44 AM

Hi, i'am new to this forum and quite happy to find out about it, not that i wish people to get those health issues, but like not feeling alone with it... So here it is, 18years ago, during summer holidays, symptoms started, as i remember, need to go quite often to the toilets, i lost about 10kg in 1 month, and so i did all the test possible without any results. Dr said, its on his head... Thks Doc. so i did change my diet, but at 15 yo, you dont know nothing about diet, and so i avoid all the vegetable, milk, thinking that fiber increase my IBS-D. i will say during a year and more i had the same symptome, going to school was a nightmare, as taking bus for about 30/40mn was a real challenge, so just arrived at school, first things was to go to toilets. but during the rest of the day, it was let say "ok", i could go for lunch out of school, go to sports...
then with time it get better, at a point i could move quite as i want, without thinking of toilet issue. around my 24yo, i started again to drink alcohol and all was good, can go dinner out without problem, drink alcohol, eat what i want, travel, a normal life, with just that issue that, on morning i need to walk a bit, move, to go to toilet and then the rest of the day is usually without any symptoms.
Then last year i worked in the worst company i never been and if i say one of the worst in Hospitality industry is not too much. over there i was constently on stress, from 6am to 1am, yes yes 6am to 1 am, it was my shift work, 19hours a day, 1 off day a week, under CCTV all the time, and the boss asking for more and more. Then, one day, same as it happen 18years ago, i was drinking a glass of alcohol, and i had a violent D in just 20mn. need to go 4 times to toilet in 1hour and half, so took imodium to be able to back in my place, and the next day asked to go to hospital. Nothing have been done overthere (it was in Malaysia), but then 3 weeks later i did some blood test in Bangkok, without any result. i did a 2 weeks moto road trip in North of Thailand, and it was "ok", but to get on the plane i should take imodium.
then i went to Vietnam and one day i had again a big attack, and then, symptoms got worst. every morning 3 times to toilet before to go work, then 1-2 times on the afternoon. i did again some more test, i will say again all the test available, but no result. so i started some treatment. I will say that now i am better, lot better in the way that i go once, maybe twice a day to the toilet, but, its when i need to go out that things get worst. the stress of maybe i will have D, increase the bloating, and i don't feel well at all, so i go dinner out only in few place near home, and do all only near home...
a recent Dr gave me Dicetel and Irribow, which improve also, but the issue of moving out of home is still here, and now, i should continue Irribow but cant find it in Vietnam, and i will start my new job soon and start to be worry of it, as i dont want to loose that job at all! Would like to get some feedback, of people, who get some similar issue regarding bloating when they need to go out, and how they worked on it to be able to get a "normal life".
Thanks for your help and sorry to be long, but i think as each case is different, details on time are important...



#7 ims99

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Posted 25 September 2016 - 02:30 AM

tell your doctor to prescribe some anti-depressant drugs it will help .your fear of not being able to make it to the bathroom will minimize and your stomach will feel relaxed. hope you get better soon.







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