Hi all,I would just like to tell you all my day everyday. I wake up,my first thought is how much pain will I manage to take today. I go to the toilet then go and sit down for my breakfast Rice Krispies,to which my hubby has to do for me. Then I go to the toilet for my first poo of the day,which starts the pain. I then have a bath again with my hubby’s help,then have a second poo. So not to go to deep as the day goes on by about 4-00pm I’ve had about six poo’s each time the pain getting worse. By now I’m in tears about wether I can cope .i struggle through each evening watching the clock so I can go back to sleep,as that’s the only relief I get,and that takes a Temazapam. I dread waking every morning knowing what I’ve got to cope with. I don’t know what’s wrong with me apart from IBS and diverticula.ive had antibiotics for. I’ve coped like this now for over a year,and I’m now just worn down. I open my eyes and wish I weren’t here every morning knowing how my day is going to go. I have multiple other problems but this out weighs them all.
If anybody out there has any suggestions,name of a good consultant even private Ect Ect I would be forever in your debt. I’m soooo desperate.
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Breathless1943
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are you following a diet for diverticulitis? If not do try that. Drink lots of water. Green tea is also good. Instead of Rice Krispies have you tried rice porridge?
Also try the heat pads that wrap around your stomach area. Hope you find some relief.
If not, do go back to your doctor, and be persistent. Good luck
Hi,I do drink plenty of water,but no I haven’t followed no diet. As for going back to my GP it’s just a waste of time,I’ve never seen the same one twice they don’t even know me
It is so frustrating with the GP surgeries at the moment I understand. I 100% recommend trying altering diet to help, it could be worth researching if there are any dietitians in your area that may specialise in it. Alternatively it could be worth, depending on your financial position of course, paying or a one off private GP appointment, that way you have a solid set time that you know you can slowly go through what you need to discuss and get the best advice possible.
Nobody should have to live in pain and be struggling, if you cannot afford the option I say above do stick with pushing your GP. Let them know it is effecting your mental health and you need to see someone. Keep at them. Good luck x
I don’t have a problem with going private,it’s just who with,I don’t want to waste money on somebody who’s useless in the past I’ve gone by recommendation. And I’ve said your words every day,”Nobody should be suffering with today’s technology. Thank you for your understanding.
Just to add,I’ve just started with a dietitian,so we’ll see what that brings.
I'm the same, worry every daty how I'm going to cope with the pain. I have to take linoclotide every day to make me go and then cramps and pain all day. I too have to take sleeping pills to sleep because the pain keeps me awake, This has gone on for four years, I've had 3 ct scans, a proctogram, 3 abdomial xrays and a colonoscopy. They found diverticular which is causing a sever narrow sigmoid , insussception and a rectocele. I am going for yet another test today, a sigmoidoscopy, then they want me to have an anal manometry, they've also referred me to gyne to check my pelivice floor. They still haven't given me any treatment, and I just feel I'm being passed around.
Hi,I can only feel for you. I’ve had this problem for over 10 yrs but it’s gradually getting to a stage where I’m struggling to cope with the pain. It seems my bowel is forever in spasms and nothing stops it.
I’ve had most of the tests you’ve had,but it’s been some time ago since I had a colonoscopy because the one I had put me through hell,but I believe it may be the best one if there’s anything to reveal.
Hi there, it was ok, a bit painful at times but not too bad. It showed realy severe diverticular disease and narrowing, things I already knew. Have another appointment on 12th december for anal manometry which tests the pressure and motility of bowel. It's going to be a while before they decide what there going to do as my follow up with sconsultant surgeon is not until 9th Jan. Looks like another lousy Christmas for me. Thanks so much for asking x
Oh can only feel for you,I wish I had a magic wand,but I will say you sound a hell of a lot braver than me.
Even though I have had lots of tests,some not nice,I don’t know if it’s my age,but this is just draining me. Last night with the pain which I always expect to get worse towards tea time,plus the worry of what is wrong,the fear of tests,and my mental state is rock bottom,I couldn’t stop crying,I just wanted to die,I even got my my hubby that worried he said he would go with me together. That’s another thing I worry about he’s got no life because of me. And just like you say nobody seems to care.
I shouldn’t worry about Christmas it’s only 1 day. Pamper yourself,you deserve it.xx
I know just how you feel, sometimes the pain is so bad I just want to die, but it's my hubby that keeps me going, I couldn't do that to him. Please don't be scared of any tests you need to have, none of them are really bad, maybe just a bit painful.It does affect your mental health, all I can say is try and get out the house every day, even it's just to the shops or for a short walk, it does help and makes you feel that you're still part of the human race. Have they told you anything about what your symtoms could be after all the tests? The more stressed you get the worse it can be, try to distract yourself in some other ways to take your mind of it for a bit. Please let me know how you're getting on. X
Thank you you’re so kind. I know everything you say is true,and if it were not for my hubby I don’t know where I’d be. No I’ve only ever been told about the diverticulitis,and that was only the beginning of this year, I was told a few years ago I had IBS. I just feel at a loss.
Anyway I will keep in touch, and I hope you will do the same xx
Hi again. Do you have constipation or diarrea? Diverticular disease can be very painful it can cause spasms in the colon, causing pain, have you tried buscopan or similar? Do you think any of your other conditions could be affecting your symptoms? I think you should make an appointment with your GP and insist on more tests. Let me know how you're doing xx
I have both,diarrhoea and constipation,I can’t find a happy medium. What suits one day can be different on another day. Buscupan does nothing for me. Diazapam works better,ormrorph but it constipates me. You need to be a doctor to juggle all this.
Why are you on oromorph? i read your initial post again and noticed you said you hadn't been out of the house for years, do you have mobility problems or is it your bowel condition preventing this? You would feel a lot more positive if you got out every day, even just for a while xx
This is not an acceptable situation yet for those who do not suffer, they have no idea what others go through! The pain when you are having are spasms and they are incredibly painful. I am surprised that seeing as you are having to go to the toilet so often, you have not had other tests to rule out IBD. You say you have diverticular - but have you ever had a colonoscopy to check for anything else besides this? My gastro consultant says that 6 toilet trips a day means a flare but I have IBD as well as IBS and so take meds. I feel that you need to be proactive and go back to your GP or if you can afford it, bypass your GP and look up gastroenterologists in your area who work both privately and for the NHS. You will pay around £250 for a private appointment but your consultant can order NHS tests for you if need be and it can be done quicker than waiting many months....I notice that you are an older person so please do not let people fob you off because of your age!!
Hi,I have had a colonoscopy a few years back,but the pain he put me through I don’t think I could cope with again. But my GP has put me in for one twice recently,but we’ve just not heard anything.
If the GP said it was not urgent, then you end up waiting many months for an appointment (which you may need to have first before a colonoscopy). I hope you are down as urgent but you would need to check on this... in my case, my GP back in 2021 refused to send me to gastroenterology because a FIT test (it checks for blood in stool) was negative, But I had at least 6 to 10 toilet trips a day plus pain plus I had lost 1 stone in around a month (this is not normal). I ended up paying a one off to see a gastroenterologist privately who immediately put in for a colonoscopy back on the NHS (he did this on the 2 week pathway because of my weight loss) and 1 week later I had the colonoscopy done at my local NHS hospital. I also have patchy pancolitis (IBD) and take meds for this now. By the way, for the colonoscopy I asked for maximum sedation which made it okay. I hope you get sorted sooner rather than later...
I have had two of my GPs put in for the two week pathway,for practically the same reason as you loss of weight,toilet trips,to say nothing of my mental state. I’ve heard nothing,the first time was about 3 mths ago. The second was about six weeks ago.
I am 66 so in 2021 at aged 63 I took matters in my own hands! It was the best £250 I have spent as the gastroenterologist right away once I told him about my weight loss said that he would organise me having a colonoscopy on the NHS under the 2 week pathway. I got contacted by the NHS hospital (where the same consultant works) 1 week later for a colonoscopy a few days after the phone call so it was all done within the 2 weeks. The hospitals are still chasing a huge backlog currently though and this is why I think you have not heard anything. You may have to pester the GP again, but if not and you can afford the one off private cost (it may be less depending on where you live in the UK) then it may be worth it to get tested sooner.
I had a colonoscopy a few years ago which they had to stop because it was so painful and I was in tears - when I had to have another one recently I was so worried I saw a private doctor who did it and the difference was amazing - managed to do it with biopsies and whilst uncomfortable not painful. I think the difference is it wasn’t rushed. The NHS system is more like a conveyor belt !
Hi Breathless1943. So sorry that you are going through this. You say you have other problems too and maybe yo are on medication. Sometimes the side effects can cause stomach upsets. I know that happens to me all the time.
I’m so sorry you’re suffering. It’s one of the worst things to deal with. No one seems to understand it. I use amitriptyline. And I have got to say they have helped. I’m sorry I can’t offer something more. But I hate this disease or whatever it is. I’m like you, my first thought when I wake up is my stomach. The only relief I get like yourself is when I go to sleep.
My doctor prescribes me Valium 5mg and I have got to say. They do help. Especially when you leave the house and you start going into panic mode.
I really hope you get some relief soon. This group is really helpful. Even if it’s just to vent. Good luck.
Well Daz I never leave the house,and haven’t done for a couple of years. Which would not bother me if I could just get some relief from this dam pain. I also have been taking Valium. For some time now.
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