Im on my last legs here. This pain is too much for me, 4 years now and it's just keeps getting worse, nothing works, I'm terrified of eating, I went 2 days without eating and couldn't get up because I had no energy to do so. I live alone, so I'm in torment alone, no one where I live understands what I'm dealing with, there like u can still do this or do that or work, how can I when I'm terrified of eating which makes me weak when I don't eat, and when I am to afraid of leaving my bathroom. Afraid of having a IBS attack in public. All my friends left me, moved on. I dont ever see no one almost ever. I dont know how much more I can take of this. So many times I thought of ending my life just so the pain would stop. Dont worry im not suicidal right now or anything, just expressing how I feel. I wish
Had enough: Im on my last legs here. This pain... - IBS Network
Had enough
You are not alone. I live this life for 30 years.
I can relate to pretty much you said..you are not alone. Lots of great people on this forum..keep coming back. Many of us can relate and going through same feelings and feelings of loneliness and isolation. I have to take a weekend laxative on Sundays..only day I can take it, as I live in housing - my own apartment, but close quarters with 31 other women. I have a pelvic floor disorder and have suffered from severe and chronic constipation for as long as I can remember. I Will be 57 in January. Just sitting here, took the Senna last night..having coffee..only way I can have a bowel movement. As good as Senna-lax is, sometimes I feel I don't get it "all out"..(sorry for TMI) and sometimes the cramping and bowel movements continue until Tuesday. I take stool softeners..two Colace a day..but if it does produce anything, it is a big ordeal..so much straining..them I have to flush a lot and can be very embarrassing, because I know residents here know if my "dirty little secret"..but then I think..there are 42 million people who suffer from chronic constipation..I can't be the only one here who takes laxatives. So my Saturday's are spent cleaning and doing laundry..while everyone else is having fun. Sunday's I don't even answer the door in case someone actually knocks. Just running back and forth to toilet..cleaning it..air freshener..still I know people "know". I too have lost all my friends..I have no social life any more. I can't even go to church like I used to on Sunday's. I can't even date..who would want a woman who has to take a weekend laxative and feels miserable during the week. Sometimes I want to give up. Have been to the emergency room, more times than people go in their lifetime. Have no family. Can't talk to anyone about it..they don't understand. There is not enough research being done by medical community, and I get ridiculed and dismissed by ER staff, Gastros..have been to several..they just throw that awful Miralax at me, which I can't take..too much cramping. Hate that stuff. Right now, have samples of Trulance but too nervous to take it..for fear of diarrhea. I have to go to mandatory groups, no bathroom breaks allowed. I too skip meals. Over the year have lost over 100lbs. Now, I'm skin and bones..but with the help of a dietician..and "Ensure" and "Boost" nutrition drinks..I am slowly gaining weight, And I try to force myself to eat 3 meals a day..even if they are small. I get unkind comments from residents about my weight..but the comments finally are settling down a bit. The Seroquel that my Psychiatrist presribed pretty much stopped the cramping..before I was taking 4 Bentyl or Levsin a day. The neausea has stopped, but still deal with very painful bowel movements, I am lucky if I have one movement a week..It is a very lonely and isolating life. But I keep going on..I figure I have not come this far, to keep getting farther...and that someone out there has it worse..
I hear u Eliana, but when I take linzess it goes from constipated to a waterfall within an hour, and i, telling ya, it takes the pain away most days when it kicks in. And I also hate that miralax stuff, it smells like glue so I know it's not good for you, probably why it body rejects it. Stuff never helped just causes problems. Also think of ur situation like this, just because someone out there has it worse doesn't make ur situation any less painful or important. My mother use to tell me when I was growing up with depression and suicidal thoughts, to get over it, u got a roof over ur head and food on ur plate, u have more then I did when I was little, I didn't have this or that or this or that happened to me so get over it. It's not a matter of how bad ur life is, depression and pain and mental health isnt a d#_÷ measuring contest, it's challenges alot of us face every waking morning. So many times I thought of end in my life and sitting in my room with a knife to my chest, I wasn't bout to write a note because I thought why should i, it's not like anyone would understand. I've had to repeatedly stab and carve at my coffe table just to keep myself from doing it. We all got problems, and hopefully more ppl we get in this site the more serious ppl will start taking us and start listining. If they want to know how it feels to have IBS tell them to allow u to rip open there abdominal and let u play with there colon with no anthiestics.
Can you try Trulance instead of Linzess..supposed to be very good for pain..but does not give you the err..runs..(sorry..) like Linzess. And insurance will cover it. I hear you..I sometimes pray to God, at night..before bed..not to let me wake up..since I have nothing. No support, no husband..nothing. If this means letting someone who has children, work to live for, let me die, let them live..but he must want me to go on..as I always wake up..I just have to not let it get control of my life, but when weekends come, I get depressed..it's hard I know..
Never heard of trulance, what does it do exactly? The reason my insurence won't go for linzess is because it's pricy. I don't mind the runs, I don't think too many ppl do, and if so they rest her deal with waterfalls than pain. The pain is the only thing that holds me down other than the bathroom. Everytime I'm in pain I ask why Lord why must I go on and suffer like this, why have I been cursed, was it my mistakes, my sins, why can't I end it myself, u said u won't give us more than we can bare, well I'm pleading with you know, I've had more than I can take, I'm barly hanging on right now. I know what u mean about letting the kids go on but what if the reason ur here is because they might end up getting it one day, u can support them and be there for them because u know what's it's like to fight the never ending battle. As for me, I got no kids, no wife, no life, no job, just torture, never wanting to wake up when I'm asleep. I wish I could have kids of my own a daughter, Autumn rue (my last name) and sons, a job to support them, I would die for them, protect them, teach them and be damned to let ano0yone take them from me unless God deems it time. My mind has been stuck in this darkness drowning for so long, just waiting to be pulled out and not cast back out but each time I'm pulled out I'm cast back out so it all just seems hopeless. When I was younger this is not what I was imagining my life to be like, I wanted to travel to see the whole world, to spread the good news of the messiah to those who wishes to listen. IBS really is something that nails u down
Here is a link for you..works like Linzess, very similar, but better. I don't have kids either..husband..family..it's hard..I too ask God, why me? Why do I keep suffering..but then I think of third world countries..they don't have roofs over their heads..sleep in gutters, no water, children starving..then I just count my blessings..it's 15 degrees tonight..I have a warm bed to sleep in..was able to just take not shower, clothes to put on..lotion..toothpaste...many people have none of this..
trulance.com/about-trulance...
Mebeverine or Colofac is great- it takes awayall the IBS symptoms and you do not feel drowsy. You can check leaflet on drugs.com and double check on yellow card MRHA under drugs analysis. Thanks for you insights.
I know the pain can be debilitating. Have you ever heard..this phrase: "I am fearful, I have fear, I am scared.." and the other person says "do it, with the fear..what is the worst that can happen"?? and you look at them like..what the?? Well..I Do this..with pain..I take Levsin or Bentyl for pain and horrible cramping..then the fear cycle sets in.."what if I eat..and have an attack or pain?" well..think of something like a child would think..yummy!! imagine back (while you are eating).."I am eating to nourish my body, I have to eat to survive. Wow..this (insert good choice) is going to taste so good!"..just try to think of how good the food is going to taste..when your mind says "oh..no..I'm going to have fear..because what if..I have an attack.." immediately, go back to the good Thought..This is going to taste so delicious..I can't wait!" if you keep repeating this over and over, the fear will lose it's grip on you..and then..just maybe..one day..no attacks..no pain..because you don't care. It won't kill you right? It may hurt..but then it may not. When we think "pain..eating this is going to hurt..your gut, belly, intestines actually tense up and ready for pain. So..try to distract..bring your thoughts back.."this food is going to nourish me, it will be delicious! Yum! Then keep repeating it while you are eating..in time your body will stop being tense..your intestines, belly, will be relaxed for all this "delicious food" that gradually, the anticipation will overtake the fear..less fear..less anxious thoughts, less pain.
I wish it was that easy. But it's not all in my head, IBS pain is real. I don't eat because I know everytime I do what I'm gambling literally. Each bite I take is a gamble that is going to possible cause me pain tomorrow, if I eat a chip or carrots or stuff like it that my body won't digest for some reason like it use too, it hurts trying to get it out, little bits of chips and carrots as small as a grain of salt trying to come out but can't, cause ur so constipated, I try to think positive all the time, but I dont lie to myself into a fairy tale I know isn't true, I know I could have one today or tomorrow, I know my insurence provider is the devil, because there the ones not in pain, so they don't care, all they care about is money, and telling us screw u and ur pain. I can't play that psychology stuff on my brain because it won't fall for something like that. I know ur trying to help, and I know it sounds like I'm hammering down everything u just said. It's just not very helpful, pain from IBS won't go away simple because u choose to try to ignore it or lie to urself. The best way to face ur demons is facing them head on, and not behind a curtain. We have to face the fact we have IBS, the pain is real, there's a problem with our digestion system, now that mentally accepted it lets work togeather to find ways to treat it until there's a cure for it instead of trying to ignore what we know is unavoidable.
Hi Alphanes - you might have a similar problem as myself - I have multi intolerances to food. I have been eating this foods continuously for most of my life without realising they are irritating the intestines. You have a lot of hidden painful memories of how the older age group just thought if kids had stomach problems then they were making a fuss. The good thing to know is that there are so many people like us. Has your nutritionist mentioned anything about gluten dairy egg intolerances which are recognised as part of celiac disease? The test I had was through a pharmacy chain but you can buy self testing kits on Amazon.com for 64 different food intolerances.
I know if you eat the same food without recognising that you have all these intolerances your life holds no future. I can understand you not wanting to go for invasive tests. Would be so interested to know what your nutritionist has advised.
I have cut most grains out of my diet including wheat, barley, rye rice maize corn flour
banana eggs dairy - I drink lactase free milk and don't eat yoghurt or rice puddings,
cheese - but I am grateful I can eat so many other foods which has helped.
I have melon drink warm Ribena for breakfast have ham and slad or vegetables, make my own soup - and eat oat bisucits made with no additives. I have porridge and flap jack home made. I use olive oil and coconut oil in casseroles. I don't et smoked foods but like fish pie and fresh fish with vegetables. I find cooked carrots and potatoes help my digestion - I can eat crisps so if I snack I have a pack of crisps with no pain or runs.
Think you have helped other sufferers to understand your feelings - keep being real we want the warts - they are the truth.
Never give up Alphanes! Your anxiety levels have gone off the scale you must seek help to bring them down by going to your doctor-then you can start the process of getting each symptom controllable -don't take no for an answer. Remember others have been there including me but now I run my live not my IBS. Good Luck
Alphanes - this problem is debilitating and affects your mental health. A cycle starts with stress and fear as you need to be near the loo. Can you say what tests and medication you have had? Have you asked for tests for food intolerances such as gluten, dairy, and egg? Have you had thyroid and diabetes tests? If you don't want to go to your doctor would you be able to leave your home and go by taxi to a branch of chemists with minor ailments clinic or a minor injuries unit which are open until 6pm during the week and over the weekends? Some online pharmacies will do tests online linking you with your GP. You can get a free diabetes test at a branch of LLoyds chemists which you might find online near you. The important thing is to make sure the mental health problems are due to the bowel problem. Can you say how you feel when you have visited your GP ? Keep in contact. Make an urgent appointment with another doctor if you have felt negative vibes before and try to sort this problem out.
I went to a gastroligest who ran no tests, just asked questions and said u have IBS, I've been on many laxatives which non helped execpt linzess which my insurence refuses to pay for again, it's the only thing that takes the pain away most days. Only thing I can tolerate is white rice, I don't eat nothing els, it's been 4 years now since I was diagnosed with IBS. I can't see no doctors or anybody that my insurence won't pay for or deem nessasry. My mental health problems I've had since I was a little kid, but my bowel problems makes some of them worse, like my depression, anxiety and suicidal ideations. I am trying to get a different gastroligest, in the mean time I'm trying to beat my insurence to a pulp trying to get back on linzess. My last gastroligest didn't take me seriously and only kept prescribing me anti acids, and saying it was for this and that but got home looked up the meds online and found out he was lying, so I see a dietitian next week hopefully but am scared to death of the more pain it will bring. I'm tired of suffering like this, alone in this apartment day in and day out, stuck here, fearing each day I'm awake of having an attack. I'm just tired, just remove my large colon and attach a shit bag. I've had enough pain. It's torture and physically exsasting and ruiins friendships and love.
Hey Alphanes,
I'm having the worst flare up ever right now. Been going on for 10 months and I am off work for the longest period of time in 25 years of employment.
I just ran out of mental and physical resources this time around. Had a good 14 years with minimal symptoms then had a couple of things go wrong (drug a GP prescribed for something minor and unrelated screwed up my gut big time).
I lost the ability to manage the stress and frustration and it got a hold into the dreaded stress/IBS cycle of doom. I also stopped eating out of fear and lost 8 kgs in 6 weeks. I forced myself to keep working with no nutrition and high stress and finally I broke. I realised I needed a better plan when I tried to go to work one day a week ago and my anxiety levels hit the roof and I lasted 1 hour on shift.
I went home and immediately booked an appointment with a Psychiatrist. Didn't go back to my Gastro (who doesn't get it really but is good at making sure I don't have any pathological disease going on and already told me straight out that he can't cure IBS), didn't go to a psychologist or counsellor who can't prescribe drugs, straight to the big guns.
He has put me straight on to a drug that works directly on subduing the Vagal nerve. This works on both the stress and the gut. Interestingly it was accidentally discovered that this drug had that effect when they were experimenting on war vets with epilepsy and intractable pain issues and found it reducing their PTSD also.
It's called Pregabalin.
I'm too early into the treatment to tell you if it is working (day 4) but as it works on pain too it might be worth asking about. I'm in NZ and it has only just been subsidised here. I will try to keep you updated on how it goes. At least I am not having any side effects so far.
I have not taken a serious drug route before so hoping for good results so I can be back in the good place I was 1 year ago. Cause this is no way to live. I need to treat my whole body so it doesn't sabotage my efforts though.
Don't give up Alphanes.
You are not alone in this.
I hear ya Kilgh, these gastroligest don't help at all in trying to find a treatment for IBS because most of them still believe it's all in our heads. There's this new device that was invented a couple years back that helps men to experience what contractions feel like in a women, I wish they would come out with one that shows how IBS pain feels like so that way ppl can truly understand what we really mean by doctor I'm in torturous pain. Sometimes I think my colon is going to explode, like burst from the pressure. They say what don't kill u makes u stronger, but they don't know swat about IBS yet, so as far as we know we could be on a death sentence. Also I'm sure plenty of ppl have offed themselves because of the pain. I'm sick and tired of doctors and ppl saying it's all in ur head, it's going to get better. It's stuff ppl say because they have no clue to what is causing it. It's an excuse they say so they don't have to deal with us because they think of they can't find nothing then nothing is wrong, well they ever think there looking in the wrong place, I mean just because it's our colon that's acting up doesn't mean that's where the solution will be. Our bodies are very complicated so finding the answer for the problem will be no less complicated. Instead of focusing only on the bowel and brain, search the immune system, the liver, kidneys, behind the bowels, below the bowels. If the answers ur looking for isn't in the bowels then the smart thing to do is look els where.
Hi Alphanes - the miralax made with polymers is not recommended now in some areas.
If you have not had a prescription for Mebeverine before, for coated tablets, I can recommend them. They take away all the symptoms of the constipation and the runs.
I got my life back after a few days on these before I found food intolerances. If you go on drugs.com you can get a leaflet downloaded of the product or read it on line.
You an check for potential allergies. I found it fine and it saved my life.
Please become gluten free it saved my life...so much out there now. And remember alcohol has gluten in it! Smoking aggravates too
To give you some hope, I had IBS for 25 years, but I have now found the way out and completely recovered. This could be a place to start: sickofibs.com/well-being/ib...
Alison
I’ve had it for 40 years you must seek help for mental health reasons I have after 40 years it has helped me have you tried amytriptilne helped me hope you improve
Amytriptyline is not only used for mental health - it is used to relax the nerves .My daughter had fibromylagia after birth , the amytriptoline helped the added tension
from pain from the fibromyagia and it helped the fear of eating syndrome as it helped relieve the spasm from the nerves.
I have a theropist I see weekly, it does help until I come back home, knowing I got stuff off my chest but nothing still hasn't changed, where trying to get me a new gastro doctor to see what they will do for me and see what tests we can do.
Think you need a combination of help. Other suggestions might be DAO enzyme deficiency
which can be hereditary, or be due to lack of copper and zinc. Sibo a type of fungal disease sometimes linked with candida yeast, can be tested for with a stool test. No need to cut you open - or give you a frontal lobotomy! The drug mentioned which works a treat for the blocks and waterfalls is called Colospa in the US. You can buy this in the US using
trustpharm365. Foods to boost any mineral deficiency such as copper and zinc can be found on draxe.com livestrong,com . myfooddata.com. I know you are so frightened to eat food as it might upset you. Do you like water melon or other melons, potatoes, avocado and dark chocolate as they contain vitamins and minerals which you might need.
The drug works well to calm down the colon so you are not frightened of fear of pain.
We are the same in the UK - when you can't find any help and they give you something that won't work you go round in circles thinking no one understands until you get some information that clicks. Many people are having to do research to help themselves -
and getting tests from |Medichecks or other private sources and then buying drugs independently as they can't get their doctors to understand their problems.
This is so expensive. Not sure where you can get Sibo breath tests, done - or the DAO enzyme test. May be you should put out a post asking other IBS sufferers to recommend where they had these tests. Sibo is not recognised in the Uk - but is recognised in the US.
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