I don’t know if I can take this anymore - IBS Network

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I don’t know if I can take this anymore

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I’m sorry for posting this, I just have no one to talk to. I don’t have any friends as I’ve moved and my illness makes me housebound - so I can’t meet anyone new. My family don’t understand what I’m going through. In over eight years this is the WORST I’ve ever felt - pain and mentally. I’m 25 and right now my suicidal thoughts are at an all time high. I honestly can’t take it anymore. I’m sorry for posting this I just need somewhere to vent to people who understand what I’m going through.

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Hi lilrose, Just read your post, and am a little concerned about your suicidal thoughts at the moment. I have read all your other post since you joined the group and started following you this morning.

I know you say your family don't understand but I think you should give your mum a ring and tell her how you are feeling. Are you from UK? Are you not seeing your family over the Bank Holiday? Please call your mum, she will want to know, believe me, I have a son who is he same age as you and I would want to know if it was him. Call her now!! Maureen.

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Hidden in reply to Maureen1958

Hi,

Thanks for the reply.

I live with my mum and sister as I’m unable to live by myself and need a lot of help due to my pains etc. My family know how I’m feeling but recently it’s turned in to “we’ve already heard this” and I feel like I just annoy them so I’ve kept extremely quiet about it. I am in the UK though x

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Cjc_woodworx in reply to Hidden

If you need to talk to someone I am always here I am from UK as well and know how you feel I get really bad pains and sometimes scared to leave my house and my family doesn't understand my parents calls me a hypocondriact which gets me down all the time

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Hi,

Thank you I’m here if you need to talk to.

I barely leave my house as I can’t walk far. I’m so sorry you’re going through this and are scared to leave your house. Try to find things that you can enjoy indoors - that take your mind off of it - like drawing or listening to music or reading etc. Try to ignore your family - they don’t understand - a lot of people don’t - maybe you could sit them down or write a letter to them explaining how you feel and how you need their support.

Sending you strength 💓

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Hi lilrose,

I've read your other posts as well as today's and you really seem in need of immediate support, but short of turning up at A & E and refusing to leave until you get it, I don't know what else you can do.

Have you phoned the NHS helpline on 111? If you tell them exactly how you're feeling maybe they can arrange some help for you. Seems to me you should be in hospital under observation.

Have you ever had or been offered a capsule endoscopy or a defecating proctogram? Neither of these seem to be routinely offered although they can reveal a lot and are available at all NHS hospitals.

You're not alone in this, we're all here to help if we can.

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Hidden in reply to Hidden

Hi,

I went to the a&e a couple of weeks back in the hopes they would get me a quicker appointment (my GP sent me there) and they said “this isn’t gonna get you in quicker you’re just gonna have to wait” and I’ve already been waiting two months to see a new gastro.

I had an actual endoscope Around eight years ago but never had the capsule nor the defecating proctogram. I’m planning to go back to the GP on Tuesday as it’s bank holiday tomorrow and see if there’s anything they can do for me but I’ve already begged and cried so many times to them I don’t see much hope.

Thank you for your reply and support it means a lot x

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Hidden in reply to Hidden

Do read up about capsule endoscopy, it's completely different to any of the other 'scopes'.

Try phoning 111 as well. If you let them know you're on the verge of giving up, surely they'll do something.

You really have to stand your ground with these people, lilrose, otherwise they'll just dismiss you.

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Hidden in reply to Hidden

Ok thank you I’ll start reading up about it now.

Trust me I’ve tried to fight and fight but I’m at the point where I feel like I’m hitting a brick wall that doesn’t want to be knocked down.

Thank you for the advice x

I just replied, but not sure if I addressed the correct person..please scoll down..

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Hey,

Don’t be silly of course it’s fine you followed me!! 💓 I remember you from my other thread 🙂

I’ve had suicidal thoughts for a while but since the pain has increased in my bum (tmi I’m sorry) and in my stomach and also developing overactive bladder (linked to my IBS) my thoughts have also gotten stronger. The only thing stopping me is that I wouldn’t want my family to find me. My mother already worries every morning that if she doesn’t hear from me, I’ve killed myself. I’m so sorry you have had these thoughts too - sometimes they’re extremely hard to fight when the pain is bad. It’s a shame your “friends” gave up on your friendship because from just these few conversations we’ve had you seem like such a warm, genuine helpful person. Something I’ve needed for a long time. My best friend ditched me because I got sick and that was a hard pill to swallow. It’s hard when people don’t understand what we’re going through so they judge us. Like would you even last a second in our shoes?

I’ve also lost a tonne of weight so I understand the “girl do you eat” comments, I also get told I look like I’m on drugs because I’m so skinny. People can be so heartless.

I know it’s difficult because I also do it but don’t compare your life to a healthy person 💓 I know it’s hard (believe me I still do it) but we have to not put ourselves down for something we sadly cannot change. I hope that life gets easier for you and you see that you ARE so strong. Those “friends” that spread gossip about you are pure evil. Please don’t be embarrassed you can’t control what your body does. No one deserves to be made fun of, honestly screw them. That’s just shown you who they really are and you’ve dodged a bullet. I know we don’t know each other except for a forum but if you EVER want to talk - even not about our illness - please message me. I will always reply. It’s lonely out here when you’re sick. Stay strong and thank you for this message 💓

Eliana5 profile image
Eliana5 in reply to Hidden

Thank you for your kind reply. Sometimes, I wish we all lived near each other..and formed and "in person" support group. So many kind people on here, I wish I could meet. Since my family is gone, I guess it doesn't matter to me, if someone finds me, because residents are very uncaring here. Then I think..well,..I'll just go in front of a truck or car..it Will be quick and painless..No one will know me. Some times I get angry and talk to God, asking why He continues to let me suffer..what have I done so bad in my life, to deserve this. Asking him, why I'm alone, when with others, I appear positive, good sense of humor and upbeat, and why everyone has someone..friends..boyfriend, husband..but you are right, I shouldn't compare myself to what I think others have, because who knows if they are really happy or what's behind closed doors. I deleted my profile/acct from Facebook, as I would see people happy in pictures they put on their page or feed..and have stopped watching media..such as TV, social media..as they would show people like Nicole Kidman, Keith Urban..etc. So, I am trying to look at things more positively..working on volunteering at an animal sanctuary..I think the reason I held on for so long, was because I always had cats all my life which I lived for and adored. I can't have cats where I live now, and if I were allowed, would not have them live in a small efficiency. I'm used to homes or larger apartments where they were happy..playful and could go on a balcony or had lots of Windows to look out of. I guess what keeps me going is there has to be a way..if I am meant to be around animals and help them..someday, I will find a way. It would be a lot less lonely. And try to handle my pains and illness, because at least I would be doing something I love. Thank you for your offer to talk. That means a lot to me. Hoping we both feel better soon..xx

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Hidden in reply to Eliana5

That would be amazing if we all lived near each other or flights didn’t cost anything. We’re lucky this forum exists.

I’m so sorry that your neighbours aren’t caring, please know that I care 💓

I know exactly how you feel, I often ask what have I done? Am I that much of a bad person that I deserve all this? I’ve been in this funk all day today actually questioning what I’ve done to get such karma. There is this saying that bad things happen to good people and although it doesn’t bring comfort know that you are a good person.

Don’t kick yourself about comparing your life, it’s only natural. You have to do what’s best for you and if that means removing any kind of media then so be it - you have to be happy. I also find it hard to look at social media especially Facebook and Instagram, everyone my age is getting married or having babies or going on holiday and I can’t even leave the house to meet anyone. It hurts, you’re not alone in this feeling.

Aw that’s brilliant that you’re wanting to volunteer! Are there any other animals you could keep? I have a lot but one thing I do keep is a tortoise - would you ever consider one? Or they wouldn’t allow you to have one? They’re very easy to care for and don’t make any noise whatsoever.

Animals are amazing at keeping you company, they know when you’re upset. It’s been said the fur of an cat or dog is supposed to calm you down. I hope you do get the chance to volunteer that would be a really good idea.

Anytime, I’m always here and thank you so do I 💓

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Eliana5 in reply to Hidden

Thank you. 🌹☺ What's most difficult at this time to volunteer or really get further than I can walk..is transportation. I live in a small town..and while I am lucky to live downtown and walk to places..affordable transportation, is desperately needed here. We do have a bus line..and the central market (where the hub - all the busses are) is two blocks down. I am on SSDI disability, and very low income a month. The metro bus system also has a curb to curb shuttle, at $5.00 for people with disability..but 10.00 per day (round trip) can get expensive. The bus, is $1.00 but we get a lot of snow, very cold here in Winter..and you pretty much are shivering while waiting at the hub for bus, or even walking the 2 blocks home. They can drop me off at a bus stop by the shelter..but the animal shelter..is down a long road bus won't take you..then there is gravel to walk on..so although it would be almost a mile walk from bus, can be dangerous in Winter, because of no sidewalks, uncleared roads from snow and ice..then I would be walking on a narrow street in Winter..and we don't have the nicest drivers here. They have almost run me down when I cross at a crosswalk, as they are impatient, even though I can walk fairly fast. I don't trust the drivers on the snowy/icy roads. I have a case manager that takes me grocery shopping, but it is rushing, as she only gets an hour with me. She also takes me to most of my gastro or Doctor appts. I still wish to be more dependent, so I am not so dependent on her, but on SSDI, can't afford a car..maintenance, insurance for it, car payments. The only other transportation is one taxi cab service, and it's expensive and unreliable. I have had to take it to ER before..and it can take them an hour to pick you up..and once I waited at 3am when discharged..didn't get home till 6am. It is very anxiety ridden when taking a taxi here. I pray that somehow I Will find a way. My therapist even tried to ask a case mgr near where I live, she passes it every day on her way to work, since my mental health agency is across the gravel road about two blocks from shelter..but no luck. I'm not much of a reptile person I'm afraid..but the turtle does sound cute. I really miss my cats at times, and my former, happier life..but I need to count what blessings I do have like inexpensive rent and places close by, including an outdoor amptheater for concerts. The last one for summer is a "tribute to Pink Floyd" band" where they also have a laser light show..and I have to miss it, since it is my laxative day. Life can be very unfair a lot..lol. Thank you for all your support and kindness and you can private message me if you ever want to talk. x

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Hidden in reply to Eliana5

ah that sounds like quite a hassle! Is there any way you could possibly “cat sit” so you look after someone’s cat but it goes home so technically you’re not really breaking any rules? Or you go to their house? If that’s any easier then getting to the shelter.

I wasn’t much of a reptile person either but we rescued him and he’s lovely 💓 he’s called ernie. All he wants is a warm light some water and good food and he’s good to go! What about a bird? Or would they not be allowed?

Aw I’m sorry I wish I could send you my cats :( it is hard to deal with the life we’ve handed. I often look back at my life when I was able to work and socialise and it makes me so sad because I’ve lost eight years of my life, but like you said we need to be greatful for what we do have right now - shelter, food etc.

Ah damn I’m sorry you have to miss that. I hope your day gets better x

Thank you I appreciate it, you’ve been so kind x

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You could always advertise it online? Ah that’s true. Have you thought about getting an “emotional support” animal. Idk if they do that in America but here they allow you to have an animal for emotional support - you have to register them as an emotional support animal and then legally they’re allowed to live with you regardless.

😂 tortoises are lovely animals. They might not be fluffy but they’re cute as hell.

Thank you but my day actually got worse lmao. Ah well it’s a new day today 💓 hope you’re ok x

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Eliana5 in reply to Hidden

Great idea! I will wait till I get a larger apartment. In glad you are feeling better..☺. I'm just having some cramping from yesterday..but I am feeling better. Just wish I did not have to take a weekly laxative..it's exhausting..lol..

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Hidden in reply to Eliana5

Sounds like a good idea. I’m far from feeling better last night was awful for me. sadly I was just trying to stay positive in my message. I’ve been bedbound for two days. I’m glad you’re feeling better though, take it easy x

Hi Lilrose92

I’m so sorry to hear that you are feeling so badly, both physically and mentally. I realize that pain can immobilize and that family can be be intolerable of understanding. I too have gone round with my mom until one day when I finally cracked! I explained that I would LOVE to be “normal”, feel like a normal person feels, do normal things. I explained that just like any other sickness it makes you SICK! I told her that no one enjoys having this and that just because she can’t understand she can at least be sympathetic to my position or don’t call me anymore because she angers and depresses me! I don’t need someone saying “ just go with me, you’ll be fine, you are being ridiculous”. I simply told everyone that If you cant understand don’t bother giving me your opinions about how I should feel!

I’m in Indiana and lucky enough to have a great doctor. I am doing much better after telling myself that I don’t care what others think and telling myself it could be worse.

I go where I want ( sometimes I actually wear a depends), it gives me a sense of security. I eat what I want and I know the consequences. I know my body now and what days will be good and bad. I take no meds, no laxitives, no diet changes. What I have done is change my attitude from negative to positive, I don’t let anyone else’s opinions matter in my life because I will do what’s best for me. I do not let anxiety overwhelm me any more and when I begin to think negative I immediately find reasons I am lucky. I truly believe a great deal of IBS is triggered by our emotions. It has truly helped me ALOT! I hope this might help you, keep a stiff upper lip and remember that no one in your life is more important than you. Only you can let others effect the way you feel, they are entitled to say anything they want but you can walk away with a smile on your face, shaking your head at their stupidity👍😄

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hi,

I’m glad you’re in a better place now. With my mum and sister they have been extremely supportive but it’s got to the point where if I say I’m in pain it’s “oh” or “you’re so dramatic” (but they say they’re joking) I can tell the jokes have some truth and it hurts me. I’m not being dramatic and believe me if I could get up and go to work like a normal person I would! I do try to stay positive but it’s hard when my health is just getting worse. Thank you for the advice

Hi Lilrose, I m sorry you are feeling so down. Can I suggest you give Samaritans a call?

samaritans.org/ns They will listen, anytime, about anything. They were really helpful to my son when he was in his early twenties and did not know where to turn for help. Now, he is a Samaritan himself. The number is free in UK 116 123.

BW

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I'm so sorry you feeling this way. On a practical note I've just started the fodmap diet and I already feel so much better the pain has eased lots and the poo is solid I also found I felt better because I was taking control of it myself not waiting for others. Hope this helps x

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I’ve already tried the FODMAP. It doesn’t work. Thank you

I know it's not easy but you can get through this. Have you thought about speaking to a therapist, there is no shame in it. I've been ill for 10 years with rapid gastric emptying, diffuse bowel disease and dysmotility in my colon and it's been a struggle but I never told anyone how I was feeling or that I had suicidal thoughts. In April it all got too much for me and a little voice inside my head was telling me to end it. This scared me enough to see my gastro doctor, he told me I needed counselling I was living with an incurable chronic illness and nobody can get through what we are all going through without some help. Four months later I'm doing a lot better, when I'm in a lot of pain I have to distract myself, I use art therapy and it does help. Two weeks ago I started yoga and my therapist introduced me to meditation which is a bit hit and miss but I suppose every little helps. One thing I do know for sure is that it's ok to admit you are struggling and never be afraid to ask for help or pretend that everthing is ok. We are the strong ones because we are living with our illnesses. The one who falls and gets up is stronger than the one who never fell.

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Hidden in reply to AmandaJW

Hi,

I’m sorry you’re going through this but I’m glad you’re feeling better. Unfortunately I cannot leave my house as it causes me too much pain. My sister drives me everywhere and she works and I can’t afford a taxi most time tbh and on top of that I live in a little village so not everything is close.

Thank you for the advice though I do appreciate it.

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I know I’m not technically “there” but I am here for you - as I’m sure are a lot of people on this forum. I know it’s not an in real life situation but at least it’s something.

Please ignore the ignorant people. You know in yourself how much help you do or don’t need. You also know what living situation is correct for you at this moment in time. I would take no notice of other people. You do what’s best for you.

I’m sorry you didn’t get to have a lie in, maybe tomorrow? Tbh I haven’t had a lie in, in years I’m always up at 4am. It gets tiring lmao.

I’m down mainly because of my health and then because I can’t leave the house and make friends so I’m extremely lonely and I’m only 25 so I feel like my life is just wasting away - yourself?

No need to thank me, anytime x

I wish I could offer more help but please don't give up, you have people who love you dearly.

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I’m so sorry that horrible woman said that to you! You are not “wasting away” at all, that’s absolutely disgusting that she would say that. So she has UC but is STILL eating pure junk? right, that sure says a lot about her intelligence. I really wouldn’t pay any mind to what she has to say.

When it comes to the case workers, it doesn’t sound like they’re actually doing their jobs - is there anyone you can contact about this? You definitely shouldn’t let how they’re treating you and allowing you to go with barely any food slide - that’s unacceptable.

As for the “friend” have you tried asking her what’s wrong? Like maybe it’s something you guys can work on idk? Or maybe she doesn’t even realise she’s being like that with you? Sometimes it’s just better for you and even your health to just come out and say how you’re feeling instead of being left to be confused about it all.

My life isn’t much better tbh, I go for a little dog walk in the morning with my mum (unless I’m in to much pain) and then stay either in bed or on the sofa on the Internet or watching bad daytime tv. My life is extremely repetitive and I hate it. We’ll get through this though 💓

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it’s ok! I appreciate the advice you did give me honestly I’m just stuck in a bad situation ha 💓 the only thing keeping me here is my mum and sister tbh

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Hi Lil rose - this is an out of date reply - as to IBS it can be extremely painful - I found I have been helped by a test to screen out food intolerances and allergens and since cutting out wheat barley rye, eggs, ordinary milk yoghurt and soft cheeses, bananas, malt, in beer,

and other foods and tannins from smoked food and ordinary food have improved.

I went to the Alphega chemist chain, and had a quick finger prick test, with detailed case history taken by pharmacist. The tests were fed into a smart device linked to the computer for analysis, and the results came through within about an hour. I had another online friend who had hashimotos disease, and her doctor sent her away even though she had severe pain, in joints, and muscles. She did not want to go back to her GP, so had a free test to LLoyds chemist linked to NHS, and was referred directly back to her GP - she had type 1 diabetes! The pain she was experiencing was due to her blood sugar disorder.

If you have not had a diabetes test recently, then may be you should have one. She was fine after 18months of hell!

If you have not had a thyroid test, may be you should have a check up. Other tests which relate to pain such as you describe can be from pernicious anaemia with low B12 and iron.

Even if your test is normal, for thyroid, the test has been altered so it may not test for thyroid symptoms which are due to gluten intolerance, such as Hashimotos. The gluten intolerance is a feature of celiac disease too. Pain from this intolerance might be another cause of your pain. it is worth checking out other possibilities for your pain.

You can send your thyroid test results back to thyroid unlocked administrators - they will tell you what your test results mean and whether any further tests need doing.

Keep trying - you never know you might find out what is causing your problems.

Hello, I've got a drawer full of medicines and pro-biotics that I have taken over the years, and do you know what I take now? None of them. After 27 years of suffering with IBS-D I have found that the long term solution that actually works is all about vitamins and fasting and both are equally important. You are effectively the manager of a food processing factory, I know that is obvious, but I have found that IBS is not about medicines, but about changing the way you run the factory.

This is based on some excellent publications, and also just observing how healthy people live. First, go to the doctors and get yourself checked for intestinal infections, and whatever other tests they want to do, you can be a carrier of some bugs and only suffer occasional flare-ups. But, if you are all clear then the first thing to sort out is your vitamins and the timing of your eating (fasting periods). An incident of food poisoning or infection can start you on a cycle that you need to make a really concerted effort to break out of. IBS causes vitamin deficiencies which are very difficult to overcome in most people’s diets, especially because you are probably eating selectively to manage your symptoms. Your vitamin levels affect the health of your guts, and the health of your guts affects your vitamin absorption, so it is a vicious circle that you have to break. Get some really good, expensive, multi-vitamins (ideally constituted for your age) and take them without fail every day before your breakfast. Do not get the ones with high calcium and magnesium initially as certainly in large doses these minerals can mess you up as they consume your stomach acid, and you should get enough of these minerals from your diet. If you are on low FODMAPs, go for all lactose free dairy products to boost your calcium. At the same time, sort out your fasting periods straight away. Your small intestine should be practically sterile, and your stomach acid along with bowel cleaning during fasting (called MMC) will usually do this. You need to fast for this to be effective, and by that I mean, ABSOLUTELY NO eating in between meals, only water, or tea with saccharin. Imagine that you never washed your dinner plates and just kept putting food on them all the time!, they would be filthy. You need to give your small intestine plenty of time free of food for cleaning and maintaining the factory. God didn't design us to have cupboards full of rich foods permanently available day and night. Your stomach will sort itself out when you have got control of your small intestine (although if you've got gastritis you'll need to finish a course of omeprazole first), and then your large intestine will improve later as nutrients are more efficiently absorbed from your small intestine. Eat a good breakfast at say 7am (porridge with 50% lactose free milk) or what suits you and then a good lunch at 12 o'clock - absolutely no food in between. After lunch, no food again for at least 5 hours, and eat well again for your evening meal because it has got to get you through the night. No supper or snacks, no food or milk at all until breakfast the next day. In general, do not eat fried or roasted starches, i.e. crisps, chips, roast veg or fried rice. The high temperature that gives the lovely crispy bits, makes complex polymers that are very difficult to digest, they feed the bacteria and make you ill. Starches should only be boiled, and this is enough. Red meats take a long time to digest, only have them once a day, and just a light salad to go with them, not a load of starchy foods, as they have conflicting digest times. You will feel hunger in the fasting periods, but you must not respond to it - only with water or no-sugar drinks. Importantly, when you are feeling better, do not resort to your old ways, you are still recovering, and you need to make a life-style change to have this level of discipline in your eating and continue with it. Start doing some exercise if you don’t already, as this will really help with your gut motility. Your intestines take time to fully recover, it takes a few weeks at least, and you need to persevere. You then need to maintain a healthy and consistent way of eating and always keep the vitamins topped up all the time to prevent you from relapsing. There is a lot of support for L-glutamine to help with nutrition specifically for your intestinal lining, this means buying 500g of the bodybuilder powder type and having a couple of tea-spoons of this a day, one before breakfast and one just before you go to bed, and you can have this in a light cordial drink. A lot of this was taken from this GENIUS paper below, but it does fit exactly with what I have experienced, and for the first time I really feel in control of something that has been a burden for years, but is not longer. Good luck.

Treatment and Management of SIBO — Taking a Dietary Approach Can Control Intestinal Fermentation and Inflammation

By Aglaée Jacob, MS, RD

Today’s Dietitian

December 2012, Vol. 14 No. 12 P. 16

I totally feel for you and understand. Just wanted you to know that samaritans are always available to listen - they can provide you with a source of support - also MIND may be able to help and it may be worth calling your local one. The samaritans freephone number is 116123. Hope today is a better day and that you feel more supported on here and in life.

I know exactly how you feel. It is debilitating and the only people who realise how debilitating it is are those who also suffer. Please call 111 as they will be able to give you the best support and also the Samaritans or Mind. My inbox is also open if you want to chat or vent. Us IBS suffers got to stick together because only we know how hard it is x

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