Hi all I have just been diagnosed with IBS after spending months going through the cancer screening tests and I still question have I got IBS.in the last 5 months I have been at points where I could not walk,I went 22 days with no bowel moment nor passing of gas my Gp did not thing for me everything was you will have to wait 10 days I ended up at a certain A&E who did me a XRay and I was fully backed up in all of the Colon they did nothing for me and told me to go to my nearest chemist they give me some laxitives and suppository’s they were not moving it just overflow my bowel was impacted in the end for up to 65 days with just overflow it got to the stage they were moving nothing it was only the bowel prep for the colonoscopy which shifted it during this time I could not walk or bend my hips were so tight with only what I can describe has having 6 sciatic nerves in each hip they were callopsing on me I could not walk properly or lay down both my flanks were literally burning and my lower back and the sides of my pelvis
my question is today I am getting backed up again and for the last 3 week all my spine or say middle of my back and all lower back and into my thighs are burning also my tummy is hard and lumpy I keep thinking they are my lymph nodes are these feelings normal
many thanks
Paul
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I'm not a nurse or any kind of expert but I would say not. But there is no normal in IBS, just what's normal for you. Sorry that's not helpful!
Personally I would see a different GP and ask to be referred a gastroenterologist. They may try to say no but don't be fobbed off, if you ask for referral the gp must refer you. Be polite but stick to your guns. It took me 2 different surgeries and 4 different GPs to find the help I needed. Unfortunately, ibs isn't well understood and is often not given the attention or support needed, we have to become our own advocates.
You're having a terrible time of it. There is support out there, it can be really hard to find but it's there. Start by keeping a symptom diary. There's online versions but a simple spreadsheet will do or a notebook. Record everything you eat and drink including medication along with when you have a BM and any other symptoms (pain etc) plus the date and time. You might also want to record stress level and anything else that might effect things like exercise, if you can leave the house, etc. This will give you evidence and might also help you find patterns and links.
hi thanks ever so much for your reply I really appreciate it.I would like to say I have seen my GP but they would not entertain me it was always 10 days and I was in such severe states I had no choice but to end up at my nearest A&E my post is only a small percentage of what has been happening I have just issued a 37 page complaint into PALS along with 40 emails in regards to Dewsbury A&E and my GP practice with a lack of duty of care,poor practice and negligence also rudeness and a lack of manners and respect.how can a junior doctor refuse to do a scan on grounds the NHS is cranky with money at the moment and it just gets worse and worse some of the things that have happened the story is absolutely massive..I have been doing a diary log since May has I was experiencing so many different things that was happening if I was to tell my story from May to present people would be horrified.I do really appreciate your reply and with all my heart I hope your health is has good has it can be
I am not an expert either, and am at the start of my IBS journey, but advice I have been given to get things moving, is to try magnesium citrate in powder form. You can mix up as much or as little as you need. Also, abdominal massage might help. Massage your colon beginning on the right side and work up and across and down the left side.
I am sure more knowledgeable members than I will be along to offer more support soon. I just wanted to offer what little empathy I could. I am sorry I can't be more use.
I also use magnesium citrate. I am in the US and here it also comes in capsule form. Each capsule is 150 mgs. Mostly I take 1, but sometimes 2. I have also been told to take a fiber supplement, so I take Metamucil every day.
hi yes it was painful I was impacted for so long I have only in the last couple of weeks started to walk in a normal fashion but still get pain in hips I appreciate your empathy and advice and you can message me anytime even if it’s just for a general chat
hello thanks for your reply I am just at e work and when I finish at 5 I then start another job until 10 tonight I will have a chat with you tomorrow have a great day.
My goodness that sounds very serious! If you have not tried golden flaxseeds soaked overnight I strongly recommend, this has been a lifesaver for me instead of ducolax or fybogel, senna tablets are good too , but the flaxseeds or linseeds are best. I also tried Aloe Vera juice which definitely made me looser but still flaxseeds were the best for me, prepare a tablespoon of the seeds in warm water, stir and leave overnight and drink it down in the morning. Very best wishes
hello thanks for your reply I am really trying to get my head around it all I am sat here now and my Spine is burning nobody would believe what I have gone through in the last 5 month it really is shocking I have felt so lost I have kept a diary log since May which tells my story physical,mental and emotional pain you are more than welcome to read it
I could only describe as having 6 sciatic nerves into both hips they were callopsing on me I was in a terrible state I was now over 20 days with severe constipation and had not passed gas the junior doctor would not do me a ct scan or mri on the grounds of radiation I am not an emergency and the NHS is cranky with money at the moment he also refused to send me back to the advanced practitioner at the main hospital saying I had already been once it’s a emergency clinic I told him I had been sent once and now my health is 100 times worse and things are now happening on the questions put to me he still refused I said I am begging you please do something refer me for a colonoscopy or ultrasound but do something he refused and told me to sort it with my GP I said I keep ring my GP and they keep telling me 10 days.the junior doctor said seeing has I am there he will do my bloods again and send me for an X-ray to see if I am blocked X-ray came back I was fully blocked all the large colon and with the pain I would presume parts of my small intestine too I asked what are you going to do for me he said it’s not is field of expertise find a local chemist I went to a chemist they give me laxitives but they never moved it I just got overflow 20 odd days turned into naily 70 having bowel impact the junior doctor did nothing neither my GP
I got asked are you having bowel movements I said yes 3 to 4 times a day but last nights was abit strange there was like around 50 pebble shaped stools which just dropped out of me it was like ripping a bag I left the hospital and then went numb in my pelvis and had no feeling I had no feeling to want to go to the toilet I had no feeling at all I then went to the hospital A&E for the third time it was now the 12th of July I had severe pain all over I could not walk bend lay down I was burning down both flanks across my lower back and into the left of my pelvis my hips and was so tight it felt I had a pair of hands pulling them I also had what I can only describe has
and chase up my colonoscopy which a out of hours GP had referred but sat on it for 3 weeks with out doing anything long story again cut along story short urgent cancer screening colonoscopy done I had already had the camera down no cancer seen on either nothing on the ct scan nothing on the biopsies just diverticula desease and internal hemeriods I have had lots of other hospital visits and got a told I must have IBS I have severe pain still all over my spine feels like I have been repeadly punched it burns all in my spine and in lower back in my thighs my pelvis is tight and also my hips I could go on and on just pain all over I don’t want to live like this anymore I am so fed up and depressed
hi mine started with a stitch like pain under my left rib it was not painful at first but after 6 weeks I was in agony so on the 6th of May I visited hospital and got told muscle strain.two weeks later I was at hospital again I still had pain under left rib and now I had severe pain in al my upper and lower abdomen and pelvis I could not touch it I could also not breath properly while eating so did not eat for 3 days I had a X-ray to see if I was blocked no blockage my full blood count was fine on both occasions I got referred to go see a advanced gastro practitioner at the main hospital within the trust.I had the assessment the lady could not put her finger on it so got referred for the camera down.
I am so sorry you are experiencing this awful pain with seemingly no end in sight. I would like to give you some hope that this may resolve in time. I too was treat very badly by my gp but did get referred and had investigations which were all clear, but found ultrasound and Ct scan viewed things differently so I would press for those, and tell the gp how badly it is affecting your mental health so they will take notice. Also ask for better pain relief!
Over time this may improve on its own, I have tried many remedies ( Holland and Barrett have very good video chat advisors that you can arrange to speak to ) who were very supportive. Just get through each day that’s the main thing, reach out to us and pester your gp ( respectfully) . Very best wishes Mutley
thanks ever so much I just do not know what’s happening it has really knocked me for six I have had a CT scan and ultrasound nothing found my Spine and thighs and hamstrings are really throbbing is this really normal with IBS
I’ve had an IBS diagnosis for 30 years and found that once you’re given this diagnosis they shelve you. I’ve had to push for tests for crone’s, came back negative. At the moment I’m in a great deal of pain with it, but there’s no point going to the dr as they just give laxatives or stool softeners.
In the past I’ve resorted to and successfully used coffee enemas. This does help to clear the lower part of the bowel. You have to use a high quality guaranteed mood free coffee, ground not instant. You could try body brushing, Spirulina, peppermint capsules. Fodmap diet and lots of water.
I’m sorry to say there’s no easy answer for this it’s a condition that has to be managed.
BTW, I’m under the same health authority as you, so I completely understand how frustrating it is.
I have a problem with the left side of my throat, ear tongue and there’s a lump and sore spot in my throat and neck. I’m still waiting to see ENT after 3 months of referral.
Hello I totally agree I had spoken to the advanced practitioner over the phone due to the severe pain I have washed my hands with my GP practice I have been once in 20 years and I literally could not walk I was a mess I am still a mess now but I can now walk they just ignored my cry for help all I got told was 10 days.the advanced practitioners told me to get an appointment through the A&E and they will do further tests I got the appointment after arguing with the A&E consultant only problem was I got to see the surgical consultant who more or less said they can not do anymore for me the practitioners would have done so it’s case closed.I am still in denial I have IBS I have pain literally all over I can not run or play football I just go to work and sit at home ,I am really sorry to hear of your problems are they related to IBS thanks ever so much for the advice
hi again, I hate the term ibs as it seems to b a catch all for everything they don’t know gut related. Yes of course everyone’ s symptoms can b different to some degree, but some people have constant pain and yet have little if no support and are treat as though it is not life threatening so therefore shouldn’t b a problem!
However after that rant I must say your symptoms seem to stretch far beyond the gut, and also far beyond ibs. Are you sure the muscle pain is all related?
hello this is why I am so confused my full blood count normal abdominal ct scan normal mild form of diverticula disease seen.gastroscopy nothing there and colonoscopy only saw diverticula disease all biopsies nothing there I had ultrasound they did it even tho they knew my bladder was not full but no stones seen the only thing it really said was prostrate seems to be altered in texture but normal in size,a out of hours GP did me a examination had said it feels normal I will have a chat with Arcadia 115 and see if my situation relates but thanks for the message it means alot
I’m so sorry you are suffering. I can totally relate. It happened to me, too the pain in the back, hips, thighs, calves and ankles. Got progressively worse over time. I was taking laxatives every day but suffered leakage, wind, diarrhoea, etc. my life was (and still is to an extent) ruled by my insides. I found the FODMAP diet so difficult to do without a dietitian but did discover that cutting out onion, garlic, mushrooms and black pepper made an almost instant difference. In the meantime, Buscopan tablets and suppositories work very well for pain and relief as well as Imodium for diarrhoea on occasions when I have to go out.
Unlike you, my GP has been kind and as helpful as possible but he told me there is no definitive test for IBS and that diagnosis can only be based on symptoms after tests for other things. I had colorectal cancer and surgery about 6 years ago and that’s what started it all off. I have been referred to a dietician who has referred me on to a specialist in the NHS but she told me to take psyllium husk tablets and/or flax seeds powder. Neither has worked and my next referral was several months away so I have contacted a private clinic recommended on the Monash website and talk to her first on Thursday this week. The diet seems to be the best way although I am finding I can’t eat any vegetables or fruit without trouble and am trying a keto diet for type 2 diabetes. Ongoing but onion and garlic family are definitely at the root of it all. It’s awkward because it means cooking from scratch and never having ready meals as they nearly all contain onion and garlic powder.
Good luck. Hope it all works out for you in the end but I think the best way will be to research and try things for yourself. Never let yourself get constipated for more than two days though.
Hello thanks ever so much for your reply I am really confused worried stressed and really depressed with it all I have gone from playing football 3 times a week and running to now not been able to even jog I still deny I have IBS if it’s ok with you for me to tell of my symptoms from day one back in April to present day to see if you can relate to them and anyone who reads this message I really really appreciate it mentally any feedback really is a lifesaver I have got to the point where I am really struggling.it started in April I had a pain between my anal and testicles when I crouched but thought nothing of it this lasted for 8 weeks, my anal was extremely sore with five fistulas hermeroids and bleeding when wiping bum with mucous,I then started to have a stitch under my left rib which got wise over time till it got to a point it was severe this lasted around 12 week.I then got severe pain in all my abdomen upper and lower and really bad in my pelvis it was extreme for around 15 days I then started burning down both flanks across my lower back and on my lower left side I was on fire I also had 6 sciatic nerves in each hip they were callopsing on me.I had generall pain all over abdomen and I could not press on my stomach at all I could not breath in properly and I was bloated and full I did not eat has I had the feeling something was pressing on my diaphragm.I still experience all the above but now I have severe pain in my spine my hips are tight all the time my pelvis is really painful all the way down into the private area my thighs and hamstrings are really sore and tender my stomach gets rock hard and it is lumpy even into my hips I keep thinking I can feel my lymph nodes in stomach and thigh my spine burns and all my lower back and into my thighs the centre of my pelvis into my private area stings my sides are stinging in the area of decending and ascending colon areas when I press around my naval it really hurts
I am sorry to hear of your struggles and it really upsets me to hear your cancer and diabetes situations I hope your meeting on Thursday goes well I really appreciate your message
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