Hi all, I’m not new here I just haven’t been on recently. I’m on here today because I don’t know which way to turn. I’ve suffered this pain daily for about 10-12yrs.
My problem is it’s getting harder to deal with. I’ve been Dow every avenue in the past 12yrs,but I’m still at a loss. Not to be to detailed,but I poopabout 3-4 times a day,and after each time I feel worse.Which I can handle during the day,but come the evening and I’m up and down to the toilet with constant bad pain,just with a strong feeling I need to go,but I don’t. I have to take a Temazapam to get me through the pain to sleep. If I get myself really relaxed almost asleep the pain dies down. But obviously I can’t live like that. On my medical records it states IBS,and Perineal pain,so that confuses me. It is just constant severe pain,and it’s really getting me down.
So ANY suggestions will be welcomed. Thank you.🥲
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Breathless1943
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Hi Breathless1943, first I want to say I’m so sorry you are dealing with this, it’s a lot. I’m sure you’ve maybe tried this, but in case you haven’t, have you tried or heard of Nerva? It’s hypnotherapy out of Australia, I believe. It’s helped me quite a bit. All my best
Although you say your medical notes state IBS have you actually had tests such as colonoscopy etc to rule out anything else? It may be worth booking a face to face appt with a GP who you will know will listen (some do not!) and push for more tests in the first instance if you have not already had them.
Thank you for your suggestion,but I’ve had some of the best consultants,all the tests possible,tried most medication,and my GP is a total waste of time.But I do thank you for taking the time to reply.
Hi there, it could be me writing this as I'm exactly the same, constant pain 24/7, no sleep. I too have had to take sleeping pills over the past year to get any sleep. Zopliclone for most of the time them they stopped working so started on temazepam. At first I had pain most days but could still manage to get some sleep, then started sleeping pills which were brilliant for a few months, then I had to keep upping the dose for them to work. I realised I was now tolerant to the zopliclone so started with temazepam. I noticed that over time my symptoms got worse and the pain was 24/7 and no sleep since starting pills. I have extensively researched the benzos and am pretty sure that these have my symptoms worse
They interfere with gut/brain gaba receptors so we end up totally relying on them to relax the guts and also help us sleep. Eventually the body stops producing it's own and totally relys on the pills so your body craves it in between doses. I am currently weaning myself off temazepam, it's really hard and takes time and a lot of willpower, I'm still in constant pain and hardly sleep but am determined to see whether things improve without these pills. Check out side affects of benzos and benzobuddies website. These pills are poisen and will only make things worse in the long run.
Hi Breathless, so sorry to hear you have such awful constant pain. Have you spoken to your dr about this? Please do as there are medications like amitrypitine that could really help. Have you a consultant that you can refer to ? Or ask your gp for a referral to a pain clinic, especially if it’s getting worse…..best Wishes
Hi,I’ve had about 6 consultants,I have tried Amitrpitine,Tramadol,Just a couple to start with.right now I’m taking nothing. My GP referred me to a pain Clinic about 2 mths ago, but I’ve heard nothing. I have tried a pain clinic before. Sorry I am taking something for it right now,Pregablin and Mirtazapine,which I have have been on for 10yrs,my GP says it’s doing nothing I’m just addicted,but she can’t advise me how to come off them,that has to be a pain specialist or consultant apparently. But thank you for your reply.
Hi there,Right now just let me start with the Benzos. I’ve been taking them now for over 30 yrs,on a take as needed basis. That’s including Diazapam and I believe taken properly,they are two of the best tablets I’m on.I’m on Pregablin and Mirtazapine which I’m just addicted to,and have never done anything for me,plus my GP tells me I need a pain specialist or consultant to wean me off. At the moment I have niether. I had one of the best specialist in the country,who whole heartedly believed in Diazapam for IBS,as I say as needed,so basically you don’t get addicted,I was already on 5mg and he upped it to 10mg,but I’ve never really took more than 5mg a day so I see them as not a problem. The Temazapam the same I try to take as little as possible to get me to sleep,but like you say just lately it’s gone up a bit. Zoplicone ,I tried once and I’m allergic to it,so my GP says.
But I will look the Benzos up,and thank you very much for your time.
You're welcome. You've been on all these meds for so long that I am convinced that they are not helping. It doesn't matter if you take them as prescribed or not every day your body still becomes reliant on them. It's normal to be in denial that they are the cause, the more you take the worse things get. When I read your post I suspected that you were taking more than just temazepam. Please read up as much as you can about GABA and GABA receptors. Join benzobuddies and read some of the 100s of thousands of people who are having similar problems and being diagnosed as having other conditions because most doctors are unaware of tolerance to these drugs and how to come off them. Please keep in touch and let me know how you get on
Yea I will just add that I was diagnosed with gastroparesis and I have always read and been told by doctors, including psychiatrists that benzos do slow down the movements of the stomach. Opioids do as well. It does not matter if you are taking them as needed or a few times a day. They are not good for the stomach and gi problems. To me it's like you are getting a temporary relief of 1 part of the problem but you are overall exacerbating the overall problem. That is stated about them in any gi research that you do and thankfully I'm no longer on them and it has made a difference in my gastroparesis significantly. I'm not a doctor but I know what I experienced and I know what doctors and research says about them and how they are not good overall for gi even if you don't have any problems to begin with.
So sorry to hear you are in pain. Have you kept a food and symptoms diary. This would also include the meds you are taking. You can then see if there is a pattern. Unfortunately whatever an IBS sufferer eats, drinks or takes it can affect them.
I'm not a doctor so use your own judgement on anything I say. I think there is a tendency for people in our society to over-use pain relief so they can keep working (or having fun) when we actually need to rest and heal. I'll use pain relief when I think I really need it, and I don't think the worse of anyone for using it, but I also think pain is often there to tell us something and there is often a price to pay for ignoring it.
If deep relaxation (to the point of almost being asleep) reduces your pain a lot, I wonder if it's the actual relaxation helping, or whether some of the natural chemical changes associated with going to sleep are what's helping.
You say after each time you poop it gets worse. I take it that means not during but immediately after, and not that it builds up over the course of the day (like my own discomfort does). It sounds from that like the cause of the pain is something in your bowel area or nearby.
You mention feeling the need to poop late in the day when there's actually nothing to come out. I've had that urge too. In my case I think it was from distorted connective tissue causing pressure in the bowel area that mimicked the pressure of poop waiting to come out. My understanding is it's one of the symptoms associated with IBS, so probably it can also be caused by gas or by irritation in that area.
You say you've tried hypnotherapy. Was that a recording, or one-to-one with a live hypnotherapist? I've used Michael Mahoney's hypnotherapy recordings for IBS - they didn't help my IBS but I found them deeply relaxing to the point of putting me to sleep sometimes. I wonder if you've tried using hypnotherapy recordings right after you poop, to see if this can relax you and counter the increase in pain? I appreciate this might often not be possible if you have time commitments such as paid work, and you may have already tried it. With some types of pain, I've found it helpful to rest and pay close mental attention to the part of my body where the pain is coming from.
You haven't said whether your poop is very loose or is little hard lumps - I'd guess if it's 3-4 times a day we're talking loose but I don't like to assume. People's answers to your question will be more likely to be relevant if we know whether we're talking IBS-C (constipation) or IBS-D (diarrhoea) or a mixture.
Hi,I think I should make myself a bit clearer. I have seen Gastroenterologist from one end of the country to the other,some at my cost. I’ve had colonoscopy,Barium Enema,ultrasound scans,CTScans,Prohctorgaph,lot more I can’t think of the names. I’ve tried the fodmap diet,I’ve had the App on my phone to take around supermarket,blood tests.Physiotherapy at my cost. Hypnotherapy one on one that cost me £300,that being referred to by my then gastroenterologist,an array of medications which if I knew then what I know now,I would not still be on two that my now GP tells me I’m addicted to,they are doing nothing for me. I think I’ve seen every GP in the practice,who are no help. I’ve seen a pain specialist,I’m now waiting to see another,who will suggest another medication,but I just want him to help me get off the two I’m on. I tend to disagree with the person above about Temazapam and Diazapam as I’ve found them to be the best for me at the moment. I’m also 78yrs old so addiction to Benzos don’t bother me. I’ve also tried Meditating daily,but it just sends me to sleep,and then when I wake the pain is just as bad. I’ve also seen a nutritionist. You say you think it’s something in my bowel area well so do I. Because my pain is like constant spasms. Please don’t suggest Buscupan because the last gastroenterologist I seen said because I have a heart problem I can’t take it. I also have other health problems that no doubt that medication is not helping. I hope I’ve made myself a little clearer now.
So you can see why I’m feeling a little desperate. I just want a bit of peace in the evenings. Sorry for the long message,but I think when you only have part of the message it’s hard to try to help.
Doesn't it tell you something that you've had every test etc and nothing can be found? Why did you start the diazapam and temazepam ? I know how you feel cos I felt exactly the same, I've had CT scans, colonoscopies, blood tests etc, etc all normal. I could manage when I was on the pills and they worked but at some point your body needs more and more and then they don't work at all, you get the pain as soon as they wear off and until your next dose.
I didn't want to admit to myself at first that it was the pills but realised eventually that they were the only thing that was constant through all this
What you think is causing it? I know you don't want it to be them, I was the same, but if you continue with them you are prolonging the agony. Have you checked the websites I mentioned! As the saying goes ' God helps those who help themselves ' I'll say no more
Hi,I’ll try and make myself a bit clearer for you. I have had the Benzos now for over 30yrs,I’ve had my stomach problem for around10-12yrs,big difference there. I also told you I had them as TAKE AS NEEDED. Which means I’ve never took a full mg yet. I also don’t need to take them everyday,as you do with,antidepressants. Which brings me to why I had them in the first place,I was severely depressed and 30yrs ago Diazapam (Valium) was one of the best tablets ,I also suffer stress,so they suit me just fine.And when you say god helps them that help themselves,believe me no one on here has tried to help themselves more than me. So I’m quite insulted by that. You should be very careful what you say,you don’t know peoples lives.
And to breathless I just wanted to say that you may be ok with being addicted to benzos and maybe that is not the problem. Maybe the actual problem is what they are actually doing to your gi system that is actually making the problems worse even if you are taking them as needed. You could be making your situation worse by having the mindset that you do. If you want to take them you have the right to but I am telling you from personal experience and what doctors say that they are only making it worse overall because they slow down your gi system and that can cause pain and constipation even if you don't think they are. And my stomach problems are definitely still there but after 2 years of being off I can tell you that it is nowhere near as bad and constant as when I was on them. And if you want relief maybe consider what people are trying to say and don't see it as totally not an option for you. If you don't want to see it again that is your right and your choice. I hope you find something that works better for you
Some years ago I was given diazepam for diarrhoea and chronic stomach pains was on these tablets for three years, my pain got worse over time and the more I worried the worse my pain got, I was informed I had become addicted to the pills It took a year to wean off them but hey I could not believe the results after three weeks of being off them my pain went completely, if you wean of tablets it must be done very slowly and the pain will not go till you are off completely, I am elderly person myself.
It tooK about nine to ten months but my good doctor back then told me to buy a pill cutter from the chemist which is quite cheap, take three quarters of the pill for six weeks then after six weeks drop onother quarter so on till you get to the last quarter after eight weeks drop of altogether, actually go as slow as what is suitable for you, the week after you drop you will get a kick back but I assure you that will improve get plenty of pain killers in for the week you drop down your dosage it is not easy but while you are on them tablets you will not get better, best of luck I always look on this site. Whatever you do never come straight off these tablets in one go.
I'm trying to wean off temazepam at the moment, still in pain and hardly any sleep. I'm hoping that the pain will subside when off them but am dreading the withdrawal symptoms. No pain relief works and I just hope the pain goes away. Where did you get your pain?
Edwangy my sleep improved greatly after I got off and so did my stomach problems. And I'd recommend to go inpatient if possible to start and they will be able to help you know how to get off of them. I pretty much sleep every night now. I take melatonin I buy from Amazon for sleep
Temazepam is from the same family as Diazepam it still very addictive come very slowly off your temazepam before attempting to wean off any other drug, I promise you it will be tough but it will be well worth it, look up the drug on your internet and it will give you the full information of these evil drugs which unfortunately where given out like sweets from the nineteen sixties I am supprised you can still get them off your doctors. And yes you are correct in that pain killers are not much help in withdrawal, the pain will go, I used to run a group with social services that was giving pep talks to people trying to wean off safely.
Yup I got off high doses of them and it greatly improved my gi problems and it also made a huge difference for the positive in my life overall so I'm not anti benzo because I was on high doses before, we're talking 60 milligrams of Valium and 10 mgs of Ativan at night for anxiety and severe chronic insomnia and I still slept horribly and erratically and once I got off I sleep 😴 better than I ever did on them. I don't think they are good for people to think they are permanent solutions to problems because they are actually causing more problems, especially with the gi, than they are solving
Hi Greenguy,I’m not doubting you know your stuff. But I am from the U.K. and one of our best Gastrointestinal doctors gave Diazapam for IBS,and if I really think about this,I can understand why. When I’m really really relaxed I can feel the pain going away. So if you think what Diazapam are for,that makes sense. I’ve had a really stressful life,and it’s no easier now. So to relax I need to find something to help,which don’t stop me living my life. Mindfulness,Hypnosis,opioids,all no good to me because I need to live a life. I also can’t understand why a superior doctor in the field of Gastroenterology would recommend a medication that upset,was he was trying to stop.
Now I don’t have all the answers,BUT,I do know it can’t be to serious because as I said if I do meditation,or totally relax the pain goes,but as soon as I’m alert again the pain is still there. So I do believe it’s got a chance of being nerves,which there seems to be no test for.
To sum it up,I don’t believe benzodiazepines as I take them are the cause.
I’m not saying it isn’t the cause for you because 60mg is high.
Oh and I agree with you about most of the things you said. And I don't know why a doctor would give them to you. I can't answer that but it is medically proven that benzos of any strength slow down the gi track and that can cause problems in itself if you don't even have gi issues in the first place. That was the only point I was trying to make and if you do research you will see the same thing. Again it is your choice if you want to take whatever you want to take. And it's also a good thing to keep in mind that doctors make mistakes all the time. So just because a doctor prescribed something doesn't mean that it is the best option. That's all I'm trying to convey and ask you to think about and research it. I'm not anti benzo at all but if I know it could be causing a bigger problem for a person than it is actually helping possibly I just wanted to point it out. And I'm not trying to argue with you or be mean or tell you what to do. Because I know text can easily be lost in translation and that is not my intent at all. I just hope you will do research and consider what you do find and take everything in consideration and not only look at it 1 way. And I understand that a good doctor in the field gave it to you and I can appreciate that. So I just hope you will research everything and consider everything with an open mind because you just may find that it gets better if you were to try to get completely off for a few months. My theory is if you are suffering after as long as you said what can it hurt to try an idea. If it doesn't help you get back on them. If you don't want to I respect that as well. I just hope whatever you do it gets better soon for you and I wish you the best.
Oh no apology necessary. And I do understand where you are coming from as well. And I understand what you are saying definitely as well. It's all good. I just want you to feel better. That is the only reason I said the things I did. I'm not trying to make you feel bad for taking it or anything like that. And I know with my stomach problems anything that I can try to get relief and any ideas I can get I am willing to try. And just out of curiosity have you ever tried Levbid? It worked quite well for my pain and Bentyl and other meds did not do anything for me. Just an idea that may help you out and also flaxseed oil is good for your stomach in many ways too. Levbid here is a prescription but flaxseed oil is over the counter. So maybe that could help you out with some of the problems as well.
To me it sounds like you really really need anti-spasmodics. I know you've stated you can't take Buscopan and apologies if this is something you've already tried but I wondered if there was a work around for the heart issue to allow you to do something similar (close monitoring, finely balanced medications). I notice that in the patient leaflet, it states to take special care with Buscopan if you have a heart condition but not that it should never be taken. I get rectal/anal spasms that used to keep me up for hours often in tears (paired with a need to push). They only fade with a mix of painkillers and Buscopan - painkillers alone do nothing (dihydrocodeine, paracetamol, naproxen). I don't know what I'd do without Buscopan - the spasms were ruining my life before I figured out what they were and how to deal with them. And from reading on here, there are other wonderful anti-spasmodics - I only take Buscopan because it was the first one I discovered.
Thank you,someone I can actually relate to. My consultant told me Buscupan 10mg the body only absorbs 2mg of the actual Buscupan,but if I didn’t have a heart problem he could give me injections I could give myself with the full 10mg,as he thought that’s what I needed. But I had to clear it with my heart specialist who came back with NO. But I have no specialist at all now as he retired,I have finally got a phone call from the pain specialist coming up,so I’m going to suggest trying them in tablet form,maybe2. I’m not denying the Benzos as they think I am,god nothing would be better than to be drug free. But until I find some relief some other way,I shall continue taking them. Plus I’m only on a small amount. But I think your totally right,and there lies the answer,hopefully.
And I understand that you are taking them for pain relief and I don't blame you 1 bit. Pain is not fun and when I'm hurting I want it to quit. So I completely understand where you are coming from
I so hope they can find something that works, what you're going through is unbearable. There must be a way to balance treatment of the two conditions. If it's a negative on the anti-spasmodics though I do remember reading about electrical stimulation treatments and botox treatments for the spasms. Obviously not something I've tried but could be another potential avenue to explore if you haven't already. Wishing you the very best of luck and sending a big hug.
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I don’t know if I can take this anymore
Don’t know if I have IBS? 
Don't know where else to go
I just don’t understand 
