Feeling totally frustrated with IBS and medical care...
Posted , 6 users are following.
I went to my primary care doctor with symptoms of IBS-which I had since May 20th, bloating right after eating, urge to go after eating, cramping on my lower abdomen and gas, also frequent urgency to go. Some days I'm almost ok and normal and then the next couple of days everything repeats. I do not have a diarrhea or constipation type but rather a mix (one large piece will come out solid and the other broken down-small spastic-colon chunks and pieces will follow, or when my tummy is really upset it will just be a soft pile of mush). No blood in stool, no red flags or fever, my appetite is good otherwise. He did not seem to care or listen, I literally had to hold his hand down just to do a basic metabolic panel blood works-which came back yesterday as completely normal. He suggested that I take probiotics and go on elimination diet, to exclude all dairy, sugar and wheat and see if my symptoms improve. Did not want to do an MRI or CAT scan. He also gave me a referral to see a gastro doctor if my symptoms did not improve and I still needed to go. I started taking probiotics and slippery elm and my symptoms seemed to have improved for a few days and then came back. So basically it varies day to day, one or two days are good and then I'm back to square one. Naturally, I'm feeling very anxious with this unresolved issue. Unfortunately, I currently do not have a private insurance/money to see a better doctor and tied to this medical group and the gastro referral that he gave me was to see a doctor/s on the edge of town (the only place/gastro that takes that type of insurance) where there's a homeless corridor and the doctor is rated 2 stars had numerous botched perforated colonoscopy jobs-thus I would never entrust such people to perform any invasive procedures on me, let alone a colonoscopy! So, I'm stuck and worried sick, assuming the worst things, of course. If these symptoms do not improve I have no other option but to go to an urgent care near my home which is sort of a mini hospital because they can run tests and have a CAT scan and an MRI inside and maybe I can persuade them to do some testing.
0 likes, 17 replies
audrey32349 layna68454
Posted
I can relate to you. Although I have excellent ins. coverage it seems the doctors hesitate to do any non invasive tests first. They always want to go for the colonoscopy first. I have such severe ibs and diverticulosis that I am petrified of that procedure. Since I got my gallbladder out I have become very ill with more problems than ever. When asking a doctor's opinion on testing I get so many conflicting answers that I get so upset and anxious it just makes me sicker.
ann55375 audrey32349
Posted
yes i am having similar problems. ibs symptoms which can vary from week to week. i do not want to have invasive colonoscopy imknow too many people who have been perforated by bad doctors. does anyone get days of nausea too?
pippa58442 ann55375
Posted
I used get nausea with my IBS. It is a pity doctors don't go over all the possible symptoms with us. Once I got diagnosed, the only help I got was an IBS fact sheet printed from this site and told to take more fibre for my constipation which I was already doing. After that, I was sent in my way. One doctor smiled and looked amused when asked about my abdomen being sore to lie down on at night.
layna68454 ann55375
Posted
More people perish from a botched colonoscopy each year than those with colon cancer, you can look at the statistics online. Including young people who end up with a colostomy bag due to a perforated intestine. Also, the entire prep procedure, which includes liquid laxative fluids is very toxic and causes potential cardio and kidney issues. I'm not making this up but did a meticulous research online, these are the facts that I doctor or FDA will not tell you! I know that many people will start yelling and saying how many lives colonoscopies have saved, etc., . I'm not saying to be reckless and ignore severe symptoms such as rectal bleeding or being severely ill-in such a case you have no choice but to get one done and pray and hope that all goes well. However,, I do not agree with it being offered as a common diagnostic testing method for the slightest stomach ailment and just as a routine procedure- if anyone wants to check for cancer there a Cologuard or they will be able to find it with a CAT scan or barium X-rays of your colon! Doctors mainly promote colonoscopies because they can charge your insurance a lot of money.
pippa58442 layna68454
Posted
If you have IBS, there is no point in further testing because nothing will show up. High anxiety levels will cause your IBS to stay in flare up mode. Your best bet is to accept your IBS, take antispasmodics, try a food diary or Low Fodmap Diet and continue with the treatments that you are currently using since it is helping.Try distraction techniques like a hobby or light exercise to take your mind off your stomach and try relaxation therapy or look into gut targeted hypnosis. Controlling your anxiety and diagnosis acceptance will really help your IBS; this worked for me and I have been IBS free for years.
ann55375 pippa58442
Posted
you have written exactly the same as i have done to the letter. i believe mine is anxiety based, and now irritable bladder too. im having difficulty keeping it in check though. fodmap i am using and it has helped no doubt. i try to walk every afternoon and use relaxation hypnosis apps. acceptance is a good idea but im finding that hard as i keep getting attacks when im not expecting it
pippa58442 ann55375
Posted
The relaxation hypnosis app should help with anxiety and diagnosis acceptance. When you get an unexpected flare up, try antispasmodics or painkillers; this works for me the odd time I get a random attack. While the flare up is unpleasant, I know I can get through it and cope because I know my medication will work. Try telling yourself that your medication will work and that the symptoms will pass. Deep breathing can also help with anxiety too. IBS can flare up without warning; unfortunately this is part of this condition and the only way to tackle it is through medication and trying to control anxiety which fuels IBS.
The important thing to realise is that your doctor has given you a definitive diagnosis of IBS based on negative test results. These tests are accurate and your doctor is the expert. Once I started to accept that, my symptoms got better.
layna68454 pippa58442
Posted
Thank you for your reply. I think you misunderstood me. The doctor never gave me a definitive diagnosis of IBS so I do not know whether I have IBS or not. You had some diagnostic tests performed and know for sure about your diagnosis, so you have your peace. Although my symptoms closely match someone who might have IBS I have absolutely nothing else to go on here. So my anxiety is not about not accepting my IBS but rather about being left in the dark about what is going on with my body!
pippa58442 layna68454
Posted
Has your doctor suggested anything at all?
layna68454 pippa58442
Posted
He suggested to take probiotics for four weeks and go on elimination diet and see if it makes me feel better. He told me to research the elimination diet myself because he said he had no time to go into it (funny, because he did charge my insurance for the visit which was around $200 for his worthless 10 minutes!:-). He did not even offer any testing until I absolutely insisted on a basic blood test-which he ordered wrong as well because he was supposed to order a full blood count but gave me a basic metabolic panel which does not show anything anyway! So, no diagnosis of anything official whatsoever. So in your case, you know exactly what you're dealing with-IBS because your doctors have tested you properly and given an official diagnosis ruling out all other things and I'm stuck in a situation where I'm just left guessing!
pippa58442 layna68454
Posted
UK doctors only give a 10 minute appointment too. You can book a double appointment to give you 15 minutes but it is still a very short session. They don't have time to discuss your diagnosis, so they give you a leaflet often printed from this site.It's up to you to ask questions because they don't volunteer the information themselves. It took me three and a half months of no help, negative tests and confused doctors before i gotcdiagnosed.
sam18386 layna68454
Posted
hi layna, on first reading you would think your doctor had done everything else to help you, but the deeper you read the worse it gets. you sound as though you have poorly managed ibs which is not mismanaged by you but your doctors. agree to see a gastro doctor, their information is proof as to what you have or don't have maybe? i think i would be inclined to try get some support with ANY appointments you have, just for extra eyes and ears, the doctors can't deny you that. put your foot down and ask for every test possible. oh and lastly do some form of relaxation, getting stressed will do you NO favours. good luck you will be ok and even if it's only ibs, at least you know what it is!
layna68454 sam18386
Posted
Thank you for understanding Sam! I know this seems like an impossible situation and is very frustrating. You put yourself in the hands of doctors hoping to find some answers, unfortunately, their primary concern is the type of insurance a patient can offer and how much can be charged-not what's in best interest of the patient. I know that stress is a killer, unfortunately right now I have a very stressful personal situation and living conditions and sitting in an office chair for around 9 hours per day for the last 7 years probably did a number on me as well. I'm now starting to exercise and doing relaxation yoga as well as daily morning walks, it really does help. Thanks again for listening and God bless!
sam18386 layna68454
Posted
hi layna, don't give up that fight! beg for as many tests as possible to get the diagnosis you need. i have had to fight for one for years after being misdiagnosed with IBS - i'm actually coeliac! i have now had to make a formal complaint against my old doctors. i may even sue, because it has had so many knock on effects. i am not happy yet but will be. tell me when you're diagnosed.
layna68454 sam18386
Posted
Hi Sam,
I will definitely pursue that route (getting more testing). I already found a private lab that does all types of blood testing without a doctor's referral-which is quite popular these days as long as you pay them cash. That way you bypass a lot of unnecessary and repeated trips to doctors, they even do celiac and crohn's and every possible test. So whenever I see a gasto specialist in the near future, I will at least already walk in with a full-blood count/panel test done which they would send me to do anyway as a starter! Until then I will try to relax and try to stay stress-free, plus a good diet. I will keep you posted. Thank you again!
ann55375 layna68454
Posted
i am interested in the private lab , is it in uk or usa?
layna68454 ann55375
Posted
USA-there are many of them if you do a search online, they vary in $ price, some are more expensive some are less, depending on what tests you want done. The main thing is you bypass a lot of wasted time and money going to doctors appointments just to get a referral to go waste more time and do all the tests and then come back again! With private labs, you pay online and get a referral to go to a lab to get the tests of your choice done, nice and easy, and you get printed results. I can't post a link here by I will private message it to you.