Diagnosed with IBS…could it really be that?

I have IBS-C had a twisted colon found in colonoscopy plus scar tissue build up after hernia surgery. They’ve put me on everything to help constipation and nothing works. I’m down to having to take a stimulant once a week now. It’s miserable 24/7. I have no clue what’s next.

Hi,
I don't accept what is wrong with me, I can't change it but if I accept it then the urge to fight for something better is gone. Because IBS is a catch all term we are mostly unique in our particular symptoms. By definition a cure is unlikely without knowing the disease.
I have struggled for what feels like a lifetime with IBS and have had every symptom and variation of symptoms from not being able to eat anything to some halfway decent days. My worst period was having the stomach so expanded there was no more give in the skin, unable to sit, having to lay down through not being able to bend at the waist. Abdominal pain off the scale at times, mostly uncomfortable all the time. For me going into SIBO bouts is now the worst affect I get. As the digestive system is complete out of control I'm limited in the amount of food/ fluid I can take per day. Go over it and into SIBO yet again. I have now been living on wholewheat bread and cups of tea for 14 months. Limited to a max of 6 slices per day and 7 cups of tea, usually 4 slices with a slice of shaved ham and 6 cups of tea. I will have a small amount of vegitables once a week with grilled chicken or fish. I'm constantly hungery and have to remind myself how difficult life gets eating more than my limit. My Gastrologist agrees with me if I can tolerate it, eat it, which is why the bread. It has little effect on my stomach in moderation. I have been through the Fodmap several times without success. I stick to what I prepare and never eat anything someone else has prepared for fear of eating something that I react to. I am salt free, sugar free, no herbs or spices. The worst part of it all is the simple fixes I'm constantly given that are well ment but useless to me. In 13 years I believe I have tried it all. Had every proceedure going and still nothing to show for it all. Now with Autonomic polyneuropathy controlling the digestive system and the new diagnosis of CSVD there is nothing but just managing each day as best I can. There isn't going to be a fix and certainly few options for treatment, just fumble my way through each day I manage to wake up.
Sadly I can only empathise with you, I can't offer a solution. Surprisingly I do best and come alive when I'm going through a starvation period, no food just cups of tea to keep the kidneys flushed and happy. I'm CKD, T2 diabetic and stumped for diet with each health issue compromising the other health issues.
Cheers

Hi Cheyne
Just read your input about severe IBS etc. along with all that you endure and suffer…….wanted to pass along this website, if you haven’t already discovered this remarkable lady.
Google: heathers tummycare.com .
She is obviously younger than I, but has become my new hope, having been diagnosed with IBS threes times over the last two decades by different DRs……and in the end they all just unanimously shake their heads and mumble. “Sorry, there is NO cure…..they all suggest diet, foodmap, fiber, less stress, daily exercise, probiotics, peppermint oils, pain relievers, etc,….. you’ll have to find your own level of comfort, yada yada, yada”. I’m 83 , struggling to stay above 97 lbs and still searching.
Basically, Heather also has suffered and still does from IBS; however, as a lay person, she has done prolific research into the subject and shares her experience, recent developments, new treatments and does sells what has helped her and obviously many others who are obviously as clueless as to where to turn when you hit a dead end. She’s written two books on the subject, (one with cooking recipes) and, if desire you can relieve texts. Both can be purchased on Amazon.
In Sum, by following her suggestions from her experiences, offers new coping ways, recpies etc. but above all, a glimmer of hope and it’s always reassuring to know we are not alone.
Hope someone else can benefit…it’s free to check out her website!

Hi Cheyne
Just read your input about severe IBS etc. along with all that you endure and suffer…….wanted to pass along this website, if you haven’t already discovered this remarkable lady.
Google: heathers tummycare.com .
She is obviously younger than I, but has become my new hope, having been diagnosed with IBS threes times over the last two decades by different DRs……and in the end they all just unanimously shake their heads and mumble. “Sorry, there is NO cure…..they all suggest diet, foodmap, fiber, less stress, daily exercise, probiotics, peppermint oils, pain relievers, etc,….. you’ll have to find your own level of comfort, yada yada, yada”. I’m 83 , struggling to stay above 97 lbs and still searching.
Basically, Heather also has suffered and still does from IBS; however, as a lay person, she has done prolific research into the subject and shares her experience, recent developments, new treatments and does sells what has helped her and obviously many others who are obviously as clueless as to where to turn when you hit a dead end. She’s written two books on the subject, (one with cooking recipes) and, if desire you can relieve texts. Both can be purchased on Amazon.
In Sum, by following her suggestions from her experiences, offers new coping ways, recpies etc. but above all, a glimmer of hope and it’s always reassuring to know we are not alone.
Hope someone else can benefit…it’s free to check out her website!

Ditto to what @ebc said above. Heather Van Vorous helped me. I have the opposite - IBS-D.

My doctors have been treating me for IBS for a couple years. I don't have IBS. My symptoms are not related to IBS but doctors still want to treat it as IBS.
My symptoms are not related to food. Doesn't change with bowel movements. I am not stress. My symptoms are related to my health condition which is Short gut syndrome. I only have 2ft of my small intestines left but I still have my large intestines.

Hi,
IBS is not a disease, it is a convenient label given when no other diagnosis fits. I would think it is not the IBS they seek to treat but in fact your symptoms they are trying to manage for you. At least they are trying to help, many of us get left in the too hard bin and are eventually left to our own devices.
There are some dietary restrictions for SBS and I would think that liquified food might help the absorption. The best plan is to do your own research and see what might work for you. My Gastro specialists is still treating me for IBS despite it now involving ANS and they have run out of options. I was pleased to be told I was one of his few clients that got off my butt and tried anything and everything I could to help my situation. Essentially that is what it comes down to, self help in conjunction with the experts. I often ask about various different treatments and remedies to get the Doc's opinion on. Sometimes we are at odds but I usually try anything that sounds like it is a possibility and report back my findings. It gives the Doc a better understanding of what I'm trying, sometimes it is news to him sometimes I get a rye smile. But at the end of the day I can't just sit and wait for a cure that isn't coming anytime soon.
Cheers

I know IBS isn't a disease. However doctors treating me for IBS symptoms when my symptoms are not due to IBS it makes my Short gut syndrome symptoms worse. Most of the medication for IBS people with short gut syndrome shouldn't take. I only have 2ft of my small intestines and I don't absorb enough fluids in my body for most IBS medications to work.

Hi,
With the greatest of respect, you don't seem to get it. They are treating your symptoms, not IBS as IBS is just a collection of symptoms with an IBS label, to call it something. Don't focus on the term IBS focus on your symptoms.
I'm treated for IBS symptoms while my Gastro specialist agrees they can't treat my ANS, which is the cause of my symptoms, there is no treatment or cure known. But still they try anything they can for my "IBS". Suppressing the symptoms is all they can try to do. I can only assume that is what they are trying to do for you.
Have you discussed this with your Dr, asking what they are doing and why?
I discuss every option with my specialist and have suggestions I add from time to time. We talk them over and agree on a plan forward for each trial. Mostly with failure but we are still trying and understand each other well now. He knows I'm up for most anything as doing nothing isn't working for me.
Cheers