bungi61

[bungi1961]

Is there any one like me that goes to bed each night praying to "WHO EVER" that if or when you wake up in the morning that this IBS/Diverticular Disease would just CLEAR OFF (putting it mildly ) and that it would go away and leave well alone only when you wake for the 1st few moments thinking it had and no sooner you think it has it comes back with vengance and you think OH no not again and never really knowing what med's to take? and what will come out of you if you try and eat and drink? and always & forever scared of every twinge pain that you get thinking OH not not again and never getting to the toilet in time as it's bad enough having the odd mishap at home where you can sort yourself out and going out fills you with fear ETC in case it happens then yes I do have a RADAR KEY and Card but that is of little comfort and I do have a stool step for the toilet but can't carry that around with me as well as extra trousers and paper pants ( Tena ) as I am a 62 year old woman and feel like I turning back into a baby not through choice no one knows just how bad it can get until they have this nasty problem?????

[Hidden]

Sadly we learn to live with it after the prayers go unanswered. The wishing never goes away and neither do the bouts of desperation or moments of absolute desperation. Then the anxiety kicks in and we make it worse, unintentionally.

So we each have to find our own way of coping with it because you can't medicate an unknown cause.

Somehow we cope, because IBS can't be treated, it is not a disease. At least not until it is defined and medication discovered.

[JanetJAM]

Oh I know exactly how you feel as I’m the same it’s like a catch 22 situation the more you get anxious the worse it gets and the worse it gets you get more anxious. My husband tells me to calm down but he doesn’t understand how bad I feel. Hope you feel better soon.

[bungi1961 in reply to JanetJAM]

Today I am in loads of pain and discomfort and with ever twinge or tummy groan I am forever dashing 2 the toilet just in case and when I try 2 sit it feels like sitting on a big pile of rocks and husbands can make it worse yes they think they are helping!!! with their remarks but when you are forever scared of what will come out the other end you just want 2 be left alone My hubby is retired so is about the place 24/7 now so no peace as today I am constipated and afraid that once I go it will "UNBLOCK" things 2 the stuff I just can't control and I am fed up with wearing these paper pants (TENA ) it makes feel like a baby but I do feel slightly safer wearing them saves me feeling full of disgust if I do have a nasty leakage ETC I have not been out 4 weeks 8/9 at least not even able 2 attend My Mum's funeral last month as she lived 150 miles away ad we got no car so would of had 2 hire one and I got 2 go 4 next lot of COVID jabs shingles and Flu all ready in a state about it I have 3 older brothers and they said OH there is services on the motorway ETC as if it's that's easy as I haven't been down there for 4 years if not longer as 1st lock down I had to shield (Breast Cancer) and now I got this Diverticular Disease&IBS and my Son died late 2019 oh perhaps this isn't the right time for this on this forum I am sorry it is just one thing after another well hope you get the pain and discomfort sorted soon

[Frittata]

yes, I get this - only I’m the other way - just praying that I can have a bowel movement at all!

I’m experiencing the most horrendous back and abdomen spasms - that can throw me to the floor moaning in agony till is subsides. Then I have to try to move again to get up and get to the toilet.

Only by the time I get there I’m so tense and in so much pain and fear, that there’s absolutely no chance my bowel is letting anything go!

I’m so bloated - by pregnancy belly wasn’t much bigger than this!

[Sarah090174]

Hiya, I can completely relate to this, I have been suffering since April 2022 after I caught a simple tummy bug from work. I have had constant diahorrea and loose stools ever since. I have only just recently been diagnosed with microscopic colitis and also possibly bile acid malabsorption. I wake up every day praying that I will feel better and have better management of my symptoms but sadly it doesn’t always happen. Sometimes I just want to stop eating even though I am only on a very limited diet. I just wish I could eat normal foods again like I used too. I also sometimes feel like I am turning into a baby through no fault of my own, I have to wear sanitary proptection all day and all night as my bowel movements are still a little unpredictable at times. So I can really understand how you feel on a daily basis. I have yet to find many people even family who understand how isolating the condition is or how it feels to have these kind of problems. I feel very alone trying to deal with this and my employer is not very supportive or understanding. Although I have a diagnosis from the gastroenterologist, my employers occupational health dept were very dismissive and said all my health issues were due to stress and anxiety. I understand that stress can be a trigger for my symptoms but really need people to understand and support me. This forum is a good source of support and it helps me to not feel so alone as there are so many struggling with these conditions. I hope that anyone struggling finds a good way to manage things and start to see signs of improvement.

[azaelea]

Hello Bungi, when I read your post you describe how I feel exactly. Wakingearly every morning with pains in my lower tummy, having to run to toilet and wind plus diarrhoea, 2 or 3 times at least within the first few hours. I have what they diagnose as Chronic Diverticulitis. I’ve had Diverticulosis for about 20 years but only short flare ups lasting a couple of days. Now I’ve had this loose bowel trouble since the beginning of this year. Darent go out anywhere till the afternoon and then scared of urgent need to find a toilet. So I feel I’m prisoner in the house. The GP’s made me do a FIT test where they look for possible cancer as a consequence it came back with a query and I was fast tracked for Sygmoidoscopy. Don’t know why they didn’t do full Colonoscopy. Fortunately with 2 biopsies they said it’s ‘just’ the chronic diverticulitis and have discharged me, telling the GP to give me Immodium IF the diarrhoea comes. I don’t think they realise it’s urgently there all the time! You ever get to discuss it with the Consultant at all these days. At least I have phone consultations regularly with my Haematologist as Ialso have Essential Thrombocythemia ( E.T.) a blood cancer. I do know worry and stress doesn’t help us but try telling us to keep calm! Impossible with this going on. I will say my husband is supportive but it ruins their lives too. We haven’t been able to travel to either of our sons for months and missed one’s 60 th birthday celebration. One other thing before I finish this long reply. Do you get nausea and loss of appetite? I do some time during the day but not constantly. Best wishes in your struggle upwards. Sorry I can’t offer any words of help. Take care. Fran xx

[bungi1961 in reply to azaelea]

Yes I do feel sick with it at times and have been sick through the night with it but that was when I had my 2 colonoscopies in a month 1st one 6/7 polyps removed the 2 weeks later another 2/3 removed ( so not much chance 2 recover ) the reason 4 that was because of my history with cancer ( breast ) so when I had some blood in my poop I was on the phone 2 the Doc this was during COVID19 and did a FIT test twice they both came back negative thanks and each time had to have tests before them just getting over that then 2 be told I had Diverticular Disease & IBS as well given a FODMAP leaflet shoved out the hospital and more or less get on with it so yes I do have the same as you I was told this in early 2021 and had another colon scan early this year maybe another in 2025!!! everyday I wake up and 4 the 1st few moments I think today is going 2 be a good day only 4 it 2 start all over again I have spoken 2 the diet people over the phone and some one from the mental health team also given mebervine Imodiums and other stuff from the Docs if I eat I get it and if I don't I still get it lost loads of weight also get chills,shivers and feels like poison& venom going through me at times as it does make you feel very poorly indeed My hubby retired Feb last year so I am no fun 2 be around as he wanted 2 go on holiday ETC my Mum got really bad dementia had 2 go into a home 4 the last 5/6 weeks of her life and I was unable 2 go 2 the Funeral as she lived 150 miles away and even wearing paper pants is of little use as this IBS ETC can attack like switching on a light and every niggle I have 2 run 2 the loo just in case until anybody gets this they just don't understand if only there was a cure!!! 4 it? look after yourself I hope this makes sense ( Oh my son died suddenly 2019 )

[azaelea]

Thank you very much for your reply Bungi. I too had Breast Cancer and lump removed in 2019 followed by radiotherapy. I had my yearly Mammogram a couple of months ago and relief that result is good. It looks like we will just have to battle on with feeling this way. They haven’t actually mentioned IBS with me, just Chronic Diverticulitis but my symptoms are definitely related to both. How awful it preventing you from travelling to your Mum’s funeral and then to lose your Son. You have my deepest sympathy. Look after yourself, Kind regards, Fran

[bungi1961 in reply to azaelea]

Than you 4 your reply I had a lump removed and they cut into my armpit also in June ( 2018 ) and was told 2 watch what I ate through my 6 rounds of chemo followed by daily ( 15 ) bouts of radiotherapy and as you well know that can mess up the entire system as you lose the sense of taste and still on anastrazole ( 1mg ) a day and that is some kind of chemo as I don't know about you but just think that was the start of this IBS/Diverticular Disease as about 4/5 months later I was getting blood after a poop from time 2 time did 2 FIT tests all OK 2 colonoscopies 1st one 6/7 polyps remove 1st time then a few more 2nd time all OK 2 of those nasty things in a month so I didn't fully recover as that nasty prep stuff is horrid and that Covid had 2 stay home all the time only out 4 hospital/medical things and as you know I have been like this 4 almost 4 years now has another colon scan this year and again all OK so still on further forward than before all this bloody stuff given FODMAP diet shoved out the hospital and left 2 deal with it on my own as if I am a Doctor (if only )as I get it if eat and if I don't "CATCH 22" all the time well I do know this is not a FORUM about cancer but again I am unable 2 get comfy on sofa again tonight like a cat on a hot tin roof as I am up and down 2 the loo as I don't what is going on!!!!! anyway take car