Just need someone to talk to really!

Posted , 15 users are following.

I guess this is my way of reaching out to someone for some help, or just someone I can speak to about what I'm going through..

I'm 19 and over the last 4 years I've been in and out of hospital with horrific stomach pains. They try to tell me I have a urine infection despite tests showing up negative or they say it's appendicitis and set me up for surgery, only to tell me it's not and send me home. I had a short spell of pancreatitis and they found an inflamed bile duct, but never told me what this meant. I've seen 10+ doctors; been for around 20 ultrasounds; a promise of an MRCP that never happened, 100's of blood tests and sample pots that get sent off and never reveal an answer.

My current doctor says he thinks it may be IBS because there's nothing left to test for anymore and has prescribed me with lobramide and buscopan, but hasn't provided me with any information or support, and I don't want to have to search all over the internet, I'd rather just speak with other people, someone that can relate to me and give me tips on what to do. I don't have any family or friends that can help with this and no one else seems to understand the frustration and agony of living like this.

Going back four years, my main problem was the pain, coming every two or three weeks and leaving me bent over, screaming in agony until someone called a doctor or an ambulance. I could never figure out what was causing it. I stopped drinking pepsi as I'd get pains like someone was stabbing me from the inside out all over my abdomen that would pass within 30 minutes, and I no longer drink alcohol due to fear pancreatitis will come back.

But recently, the pains have been constant -- all day, every day. It doesn't matter what I eat or if I don't eat at all, it feels like sharp stabbing pains, 8 times out of 10 it's on the left, but also feels like pressure.. Like I'm full of air and the slightest movement is agonising and feels like I'm going to burst. I'm bloated 24/7. If get the urge to go to the toilet about 15 seconds before the pain intensifies by 100% and I barely have the chance to get to a bathroom in time. I'm constipated in the morning but by night it's the complete opposite, going about 10 times a day.

I had to quit my job as a care assistant as the pains were too much to bare on my feet all day, and I'm now bound to office work and call centres, which is embarrassing when you have to sprint past 400 people to reach the bathroom, or if the urge comes while I'm on the phone to a customer. I lost a job a few weeks back due to being off sick and I'm afraid I'll lose my current job also if I don't find an answer quickly. If the pain is too bad, I can't make the journey to work, so not only am I ill and in pain, I'm stressed over job security and money.

Please, if anyone has taken the time to read this and feels they may have a spare few minutes to share their experiences with me, hints and tips on the do's and don'ts, anything you feel may help, or you just feel that you could be a friend to me, someone to relate to and just discuss how our day has been and how we're feeling, I'd really appreciate it. I feel so alone and isolated living like this and I just don't know what else to do. Every day is constant agony when all I want to do is have fun and live a normal life.

2 likes, 16 replies

16 Replies

  • Posted

    First of all, I am so sorry you have to go through all of this! sad

    But on the other side, I am so happy (I know that's not the right way to say it!) that someone else has exactly the same as I have!! You are definitely not alone in this! And if you ever need to rant of anything, do get intouch!

    I am currently trying to set up a support page on Facebook, called Bog buddies. You're more than welcome to join that! There's only a couple of us at the minute but we're all going through similar things!

    What is an MRCP?

    Like you, I've had numerous amounts of tests and everything and they're still saying its IBS. Which it's clearly not.

    I have D and for nearly a year now, have been housebound and had to leave my job.

    But the pain is exactly like yours!!

    And the doctors are saying its nothing to worry about and probably just a spasm.

    There was a time my dad found me in and out of consciousness on the bathroom floor and I was passing so much blood, the doctors sent me home from A&E with ibuprofen and said if it happens again to go to my GP! Absolute joke isn't it?!

    Do you take any tablets or anything? For the pains and the poops?

    Are you in the UK? You can go on the sick and get SSP or ESA which isn't much but it's better than nothing I guess. You also get free prescriptions.

    Sending you big hugs! Just remember, you aren't alone through all of this!!

  • Posted

    Hi, sorry to hear your having a bad time & you have not got anyone you can talk to about your distress. i have ibs-d, colitis, bile acid malabsorption & fructose malabsorption all successfuly controlled by meds & diet now. it took nearly 3yrs to get to being better & i know how frustrating & painful that can be. i too nearly lost my beloved job earlier this year to my sick absence, but after much pushing with hospital finally got proper diagnosis & treated for all my conditions, & am happily back at work now. from what you describe i think it could be worth you asking your doc or gastroenterologist for a sehcat scan to see if you have bile acid malabsorption(bam). this causes urgent diarrea, bloating, stomach pain & often mimics other bowel conditions. after i was successfully put on meds to control colitis(colonoscopies came back within normal limits) i was still getting the above symptoms & my gastroenterogist sent for a sehcat scan as he suspected bile acid malabsorption. the test was positive & i was put on additional meds for this which resolved all my symptoms within about 3wks!! i still get the odd blip now & then, but i expect that with several bowel problems to deal with, but the odd blip is nothing like i used to go through & does not stop me going to work or going shopping etc. i no longer have to dump my trolley in a shop to find a toilet urgently!! please keep your chin up, things do get better as proven by me. take care
  • Posted

    Hi, it sounds like your having a really rough time of it. This is a great forum to get help so you've done the right thing. I recently put on a post regarding my IBS and had fantastic responses, one of which I think might help you greatly. Take a scroll down and have a read if you haven't already done so.  Remember, everybody's different so what works for somebody might not work the same for you but you can tweak it to suit yourself. You will find a solution to this, it might take time, but you will get there.

    Your symptoms definitely sound like IBS. Personally I don't find that Buscapan helps me at all and NHS 24/7 recommended taking Ibuprofen which helped more. I'm still trying to find my way but as I say, have a read on here and start getting yourself back on track.

  • Posted

    Sorry for what your experiencing and feeling, the physical is bad enough, but also affect of lifestyle, more so if on your own trying to cope with all.

    l didnt really have symptoms like yours, but did suffer frequent severe pain, poor health, bouts of aneamia, thrush, long catalogue of symptoms, tests, xrays,s scans, nothing found, so put down to post csection, gyny, hormonal, phycalogical, now many get told ibs. mine turned out to be intersticial cystitus, took l3yr to get diagnosis through scope, meds helped 90percent, In that time ld gall bladder pain and had it removed, not stones, inflamed, For some it can take a long time to get right diagnoses. Have you seen gastroenterologist and had a scope,of stomach.   l guess theyve checked your gall bladder, l think the bile duct is connected to it,,and pancreas near,  have you been tested for being ceoliac, If youve not seen one ask for referral to gastroenterologist, l think gps sometimes make light of problems which are devastating to patient, affecting their lifestyle badly, sometimes you come away feeling worse, but keep at them till you get answers and help. Re work, you can only do your best, if able, and if not its not your fault your ill. l hope you get help and support and keep battling on and it will improve in time. best wishes,  

  • Posted

    So sorry for what you are going through. This is so very difficult to deal with at any age, but It's definately unfair at such a young age...I know most people don't want to hear about the spiritual aspect, but sometimes the only way God can get us to is thru bringing us to situations we cannot deal with and so last but not least we turn to or look for Him. I know up until the past couple of years I believed in God and in salvation. I DIDNT REALLY practice anything or would have ever believed that my Dad's terminal cancer was to learn from or losing my father in law 6 mos. After my Dad losing his battle as during all of this my mother in law was and still is fighting her uncurable cancer battle...my uncle lost His battle and my aunt was diagnosed w/cancer had surgery, chemo and is in remission..ya it is/was their battles, but if someone would have led me down a God path during all of that I would have thought ok...whatever if God wants to talk to me...He could definately find a better way of doing it...well I ended up hearing a little during all these trying times and then a year after all of that and a year ago this month I had my 1st of what seemed to be never ending diverticulitis attack which they are now treating me for IBS. So now that I have gotten so far off track, but not really....if nothing else is working and your not opposed to trying something that can definately have healing results, why don't you say a prayer and open up a bible to the book of John and then Matthew

    I will pray for you too because I know how dark and helpless most of the last 12 months has been for myself, but when I decided to do a little searching myself I found everything falling right into everything that I am reading and comming to realize....with knowing Him He wants nothing but the Best for US even thru the bad. I am so greatful for the health problems I have as crazy as that sounds becuz it has allowed me to to see life in a whole new way and have nothing to worry about...with knowing God's plans smile and I can tell u 3 months ago I would have laughed and said whatever ya nut job if I would have read something like this...lol......so I hope this helps....keep going to Dr's, be persistent press for answers and if they have none make them tell u where u can get the answers....Mayo Clinic in Mn depending on where u live. Don't give up....find the answers u need and don't stop til u do. Keep food log, drink lots of water see a nutritionist....gastro Dr. Natural things such as ginger, curry....not for everyone, but cannabis is said proven to help with IBS, JUST SAYIN

  • Posted

    Sorry to hear what you are going through. Personally I was ill for a year with a range of different things but had to figure it out for myself because the doctors left me undiagnosed but I suggest if you've tried everything to look into low stomach acid, maybe even gut bacteria as this seems to be the answer to a lot of stomach/gut issues doctors can't seem to figure out yet. There are IBS specialists who might be able to tell you what it is who could be helpful, would suggest looking into it.
  • Posted

    Hi there, certainly the abdominal stabbing pains are synonymous with IBS , the pain will literally double you over it can be that bad, however can you try answer a few questions

    1) are your stools a consistent colour (medium brownish)

    2) do you see undigested food in your stools

    3) have you had a Calprotectin test done on your stools

    4) is your urine the same colour it's always been if not how has it changed

    5) have you had full blood test and if so was there anything out of the ordinary

    6) other than lower abdominal pains do you have any others and where

    7) do your stools have a unusual smell or repugnant smell

    Sorry about questions it's just it would help to know a bit more to make educated guess

  • Posted

    Hi you need to checkout for sure what you have to be sure you have nothing serious. If its IBS I had a similar problem for a while after taking a course of antibiotics (6 months) to "treat" rosacea. it worked temporaily but destroyed my guts and i had to keep taking the antibiotics or it woudl come back. Same thing as you dreadful cramps / pain / toilet! So I tried going vegan, no meat fish or dairy. this cleared up teh rosacea. also no coffee. I then tried a 3 day just water fast. Honestly it sorted my IBS and i haven't had any problems since. anyway, it might sound wacky but it worked for me! Good luck to you!   
  • Posted

    Hi. Im 19 and my fiance has colitis and has been struggling with that for around 7 years now. So although i can not give you advice from me personally, but from being with him i believe i have a average knowledge and hands on experince. Feel free to ask me anything and i will do my very best to help ir if you even just need to speak to someone. I have my own medical problems and i know it can be frustrating and upsetting being young with medical problems no one can help you with or relate to.
  • Posted

    Hi. Im 19 and my fiance has colitis and has been struggling with that for around 7 years now. So although i can not give you advice from me personally, but from being with him i believe i have a average knowledge and hands on experince. Feel free to ask me anything and i will do my very best to help ir if you even just need to speak to someone. I have my own medical problems and i know it can be frustrating and upsetting being young with medical problems no one can help you with or relate to.
  • Posted

    Hello

    Have you tried to work as a freelancer? I live in Eastern Europe and work for some American sites. Sitting at home mostly. Going out only to pick up some food at the supermarket. It is very comfortable job if compared to journalistics. I am a former journalist. I'm so happy that I can go to the bathroom whenever I want  biggrin

  • Posted

    Ive dealt with the same issues for over a year and a half before I got any real help. Severe left side pain, constipation followed by diarrhea, hair loss, malnutrition and unable to eat much more than bananas, potatoes, yogurt, ice cream and little amounts at that. I lost over 30 lbs. After a lot of time off work and pain and suffering, I finally had surgery to remove 1.5 ft of my colon. Now the pain is gone but I still have issues. But I can eat. I was diagnosed with gastritis, gastroparesis, gallbladder was removed, colitis, crohns, and with all that it only matters that the pain is gone, I can eat, and my hair has come back.
  • Posted

    19 years old also bin dealing with some kinda pain I suffer with everyday 6 years now sad came across this post on google looking for help and wow can say I finally found someone who has similar stuff like me I felt hopeless and alone !

  • Posted

    Hi i started with a lot of air burping flaring. I have being drinkng tea chamilone ginger with probiotics and mint n it has help. Less bloated.
    • Posted

      Then aftwr feeling bloated started having pain. And my stool was softer n then i would get constipated. But as i said tea has helped

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