Not sure whether I’ve got it or not
Ian 71 and these symptoms only started a few months ago when my toilet rythmns changed and became irregular and I had an occasional pain low down near my groin
The doctor sent me for a CAT scan which revealed a GIST (gastric-intestinal atonal tumour ) .After many tests and 2biopsies it has been found to be benign and they will monitor it regularly to check it remains so .2 different consultants have told me that the GIST is not causing my symptoms but they have got worse .I have been told that this is due to stress and I have been very stressed .
I get a kind of tight feeling in my right side after a bowel movement which seems to worsen after I eat and as the day goes on .I suffer mainly from constipation but occasionally diarrhoea and only feel normal in the days I don’t go to the toilet .I have cut out gluten and also dairy for over a month but there has been no change .I am obviously massively relieved that the tumour is not malignant but still worried about this as it was what I went to the doctor about initially .
Any thoughts ?
Hi, I'm so sorry that you had to go through that stressful period of being diagnosed with a tumor, that must have been so hard. 🙁 I'm just glad that it's not malignant.
Have you had other tests done to rule out infections, IBD etc.?
Since you mentioned that cutting out gluten and dairy didn't help, I'd probably deduce that those aren't triggers for you. Not everyone will react to them! You could try keeping a food journal if that sounds like something that might help, we have a free one to download here: https://irritablebowelsyndrome.net/living/food-journal-download. But it's also very possible that your symptoms got worse because of the stress! I personally have anxiety and it's my biggest trigger for sure.
Have you tried any stress management techniques to see if that helps? My favorite are gut-directed hypnotherapy and EFT tapping. The first has helped my digestive system be less reactive to stress (I used to have to go to the bathroom immediately when something stressful happened, and now it's much better). EFT helps me with my anxiety triggers, which also means that my IBS gets less triggered. If you're interested, I had shared my experience with both here: https://irritablebowelsyndrome.net/living/hypnotherapy-app, https://irritablebowelsyndrome.net/living/eft-tapping. But there are many other techniques, as described here: https://irritablebowelsyndrome.net/treatment/stress-mangement-improve-ibs-symptoms. I hope this is helpful.
Now, regarding what your doctors said about the tumor not causing your symptoms: I'm obviously not a doctor, but I've heard too many doctors tell me that things were 100% unrelated when that was clearly untrue. In my (non-professional) opinion, just because there aren't any studies to prove that things might be connected, doesn't mean they really aren't... (For instance, and unrelated to IBS, my husband went to see an allergy specialist yesterday after having an allergic reaction to antibiotics 2 month ago. The doctor told him that he 100% did not have an allergy and gave him a shot of that same antibiotic to prove it. 2 hours later, my husband had a severe allergic reaction... and that was a doctor who has amazing reviews and had been recommended by many!)
Of course, it may very well be that the GIST has nothing to do with your symptoms, but it would make sense that a tumor inside your digestive system might at least somewhat impact it? I'm just wondering if it might have something to do with the tight feeling on your right side, since abdominal discomfort comes up as a symptom when googling GIST.
Karina (team member)Hi
I didn’t know had the GIST when I went to the doctor and my symptoms became much worse after the diagnosis before I knew it was benign .This is what has led the doctors to believe that it is IBS .I have consulted two doctors , NHS and one private who both were convinced that is the GIST is not likely to be causing these symptoms .
I don’t feel ill particularly ,haven’t lost weight and I would not characterise my symptom as pain just vague discomfort ,rather like an over tight waist band .The private consultant believed my bowl has become sluggish .There was no evidence on either scan that there was an problem with my bowels and I have done a stool test which came back normal but I haven’t had a colonoscopy .
It’s just that many of the descriptions I have read about IBS seem much more severe than mine I’ve never been overcome by pain or had to rush to the toilet but my symptoms are worse after I have been to the toilet .On the days I don’t go I don’t generally have many symptoms .which seems to be the opposite of what people say about IBS .
If it is the GIST I will have to live with it as they don’t intend to remove it unless it grows which means it may become unstable .They intend to monitor it every six months .Im just worried that it is something other than IBS even though other than irregular bowel movements I don’t have any other vowel symptoms .Theg say that an MRI and a CAT scan has more or less ruled this out .Thank you for your adviceHow long have you known that it is benign? Maybe your symptoms will calm down a bit now that you don't have to worry as much anymore, I really hope so.
As for IBS, it's all very individual. Some people have severe symptoms, other people more mild ones. My IBS-D, for example, only rarely causes pain. Mostly, it's just discomfort and needing the bathroom more often, unless it's flaring very badly. We also have this forum about more "mild" IBS: https://irritablebowelsyndrome.net/forums/mild-ibs-anyone, if you're interested. And in this forum about IBS-M: https://irritablebowelsyndrome.net/forums/ibs-m-forum-discussion,also describes feeling better during constipation days (you have to scroll down a bit to read the comment).
It's good that other issues have been more or less ruled out with the scans and stool test. Is there a particular reason why you're still worried that something else might be going on? You could always push for more tests to be sure if you don't feel comfortable with the IBS diagnosis.
Karina (team member)
