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20+ years and at the end of my rope...

3K views 3 replies 4 participants last post by  Leo41 
#1 ·
I'm not new to this life... But I still find myself begging for this to end and wondering why I always have to be in pain and sick...

Ever since I can remember I have had "belly" issues. When I was little I remember diarrhea all of the time. I remember getting stomach aches every time I ate, whether it was two bites or ten.

Most of the time people just yelled at my mom for not forcing me to eat more, and as many issues as me and my mother have had over the years, I am extremely happy that she always believed my pain and never forced me to eat something I couldn't.

When I was around eight I had my first upper endoscopy and found that I had the beginnings of ulcers and that the tissue in the bottom inch or two of my esophagus was inflamed and that's why it hurt when I ate (it still does when I have had bad reflux days). I was put on zantac (the liquid is horrid!!) and they increased it a few times before I was 18 and by then I was on 300 mg twice a day... and It still wasn't helping...

I live in a constant state of nausea. it is more rare for me to not feel ill than it is for me to feel ill. Most mornings I wake up early and feel sick, sometimes have to sit in the bathroom for a while, and sometimes I just out right vomit.

I have two little boys, with my first I was 19 and so sick that I lost ten pounds the first month I knew I was pregnant and didn't start gaining weight back til I was almost five months pregnant.

With my second I miraculously had no heartburn for months and months, it finally came back when I was eight months pregnant, but just after I had him I breastfed and wasn't sick for ages! granted I had the occasional I ate too much, or ate something too greasy, but it was literally the first year of my life that I ate normal amounts of food! It lasted almost 10 months, but as soon as I was breastfeeding less I started loosing my appetite again and started loosing weight.

during that time, basically all of 2014, I was also doing really well with my abdominal pain, and by really well I mean only a few terrible days a month if that, but around thanksgiving I seemed to be sliding right back into my old ways...

I'm rarely hungry, tho I know I need to eat, I don't feel hungry per-say I just immediately feel sick...

So I have been eating less than i know i need to but can't force myself into that pain...

and the last few days I have been feeling something coming on but I tried to ignore it... well now since Sunday I have been having terrible cramps, diarrhea, vomiting from pain and pressure. it feels like someone shoved a lead weight in my stomach and nothing I do can make it go away...

honestly haven't eaten anything that has stayed down, and I can barely drink water without feeling like I need to immediately go to the bathroom...

I only slept an hour at a time last night... I kept waking up dizzy and sick to my stomach and needing to try to use the toilet again...

Most of my family thinks I am over reacting... (yea because going to the er where i hate needles and getting morphine for pain is over reacting....) My friends are very few these days, somewhat due to constant canceling... I don't like to eat at restaurants or have to feel like people are watching me and judging me on how much I don't eat... I don't do parties because I can't drink and I'm always worried I will destroy someones bathroom and have to move cities and change my name...

I'm getting very depressed from this lately... It was hard having a wonderful year where I felt like a normal functioning person and then back slide to the hell i'm use to.

My best friend in the whole world, we have known eachother since we were seven! (i'm 26 now) She has always been the one person to never judge me or minimize my pain. shes just there for me... whether its to pause the movie every time so i don't miss anything during a flare up, or holding my hair when I can't help but be ill...

She is taking me and my two boys to Oklahoma to visit her for two weeks in august, the only thing that worries me is that we are planning a trip to South Padre Island, Texas. It is a beautiful place with beaches everywhere, our hotel is only a few blocks from the ocean! This is the best trip I have ever planned and more than needed for me and my boys! did I mention we were homeless most of 2014?

I worry that when the time comes I will still be suffering in pain when I should be sitting on a beach! I have about 38 days before we make a 12 hour drive... i'm so nervous... But I wouldn't plan this trip with anyone else, because no matter what she will do everything in her power to help me and make sure we all have a good time :) If i didn't have her... i'm not sure I would survive this... or would have survived my childhood either!

i do have a boyfriend, we have been together eight years, he is the father of both of my children. I am in school to become an RN (cuz i'm stupid and love stress).

Well thanks for listening! If anyone has any suggestions? maybe a brand of probiotic? the one I tried I don't think it did much...
 
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#2 ·
Hi, Im sorry to here about your troubles :(

I've had IBS-D for 20+ years. Same as you, I was very young when I got it and (unlike you) my parents would force me to eat food that made me feel so sick. I would have to come home from school early because the pain would be so bad that I could barely walk. Over the years I have also developed multiple auto-immune disorders. What works for some doesn't work for others but I'll share what cured all my auto-immune disorders including IBS. My doc also has IBS so this is all based on her results and her fancy doctor research ;)

Stage 1:

a. Go on the Atkins diet for 2 weeks & don't eat any wheat, gluten, soy, or corn products. If you start to feel weak/overly tired just force feed yourself. Protein fills me up really fast (I also kind of hate meat) so I tended not to eat all that much but I would feel like I could fall to the floor and enter an internal sleep. lol. I was SOO tired. So I forced myself to eat more. I eat a lot of eggs(mostly egg whites), meat (any seasoning is homemade, no deli meat), blueberries, asparagus, lettuce, Brussels spouts, butter (no olive oil). I basically try to stick to paleo type foods, everything homemade. But I stay away from things I know will trigger me just to be safe. Since, I've cut out the wheat, gluten etc, I've been able to eat foods that have previously been a huge trigger for me. I actually got to the point that ANY vegetable was a huge trigger. Now I can eat whatever vegi I want.

I should also point out that I tested negative for gluten/wheat/whatever intolerance.

b. Probiotics: My doc recommended the RAW brand at 80 billion (it's expensive!). But she said that her daughter (in medical school) at Harvard recommended taking 400 billion. She does 3 capsules of 80 billion every other day(or something like that). I'm doing 100 billion once a day and it's working fine. I'm taking the GNC brand because it was on sale and I'm poor lol.

Stage 2: SLOWLY integrate rice THEN potatoes. I haven't gotten to this point. I'm hanging out in stage one a little longer...mostly because I'm scared my symptoms will come back and also I want to lose a few more lbs before I start eating rice again. haha

A few more things. Don't trust labels. If you want to eat gluten free bread/pasta/whatever then just make it at home. But you shouldn't be eating any until stage 2 anyways ;)

Hope this helps. If not you then someone else.
 
#3 ·
Hello,

I don't really have any advice to gve because i was just diagnosed with IBS a few months ago, but I wanted to say that I feel your pain! I'm so sorry that you've been trough all of this. I am also in school o be an RN and the stress from 2nd semester nursing school is what triggered my first serious IBS attack which led to my diagnosis, so I definitely understand the stress in that way! I'm also in my early twenties and don't really have a lot of friends to go to for support because of frequent cancellations, so I understand that as well. Most of my friends were supportive and concerned when I first started having serious pain all of the time last semester and I lost about 15 pounds in two months because I couldn't keep anything down. I went to the ER multiple times and the first doctor I had ran a bunch of tests but just kept giving me narcotics instead of fixing anything. When I switched GI's he finally figured it out. But I realized that my friends who were so supportive at first became kind of tired of hearing me say that I was hurting all of the time or that I was always tired. They would've never told me this but I could feel it in the qay they reacted to me. I started feeling bad for burdening them so much with it so I kind of just stopped saying anthing about it and would lie saying that i feel fine. So I really just shared all of this to say that I understand and I feel your pain. You're not alone. Wish you the best!
 
#4 ·
I am making a 14 hr drive to the beach tomorrow.

What are you worst symptoms? The cramps... are they spasms. Diarrhea... how often?

I STRONGLY suggest you read my thread to see if this sounds like you, if so I have lots of recommendations. Are you on any meds from your GI? At the end of the thread I detail what I am taking that has helped IMMENSELY. Also a good tricyclic antidepressant would likely do you wonders. Remeron would be my choice for you... direct gut pain relief, and helps with the diarrhea. If you are having spasms of pain like I describe in my thread peppermint tea from heathers will be a major help in pain but will mess with your heartburn unless you now have it managed with meds. The magnesium citrate is FANTASTIC for cramps/spasms but will push you more D unless you have something to offset it with (above mentioned remeron, or an antispasmatic... such as Levbid/Levsin, or at least bentyl.

I would for sure be on L-Glutamine in your case as it directly heals the intestinal linings and helps with the inflammation.

Probiotics could be risky right now, as many people have a worsening of symptoms during. No question they are a good thing, but us IBSer's dealing with them during can be a problem. You do not want to worsen in the short term.

Link to my thread... http://www.ibsgroup.org/forums/topic/238785-hi-everyone-i-am-new-in-pain-and-hoping-for-some-answers/

Good luck.. I do my drive tomorrow at 6:00am.
 
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