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People of HU - Living with Irritable Bowel Syndrome

SaskiaHU profile image
SaskiaHUHealthUnlocked
10 Replies

As explained by the IBS Network, Irritable bowel syndrome (IBS) is the name given to a longstanding illness consisting of frequent abdominal discomfort and bowel symptoms that cannot be explained by any other disease.

IBS has a multitude of symptoms, which vary from person to person. Today, Sylvia shared her story of how she lives with the condition.

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I am 68 years old and live in a rural area in a fairly remote location in the United Kingdom.

My health had always generally been good. I got plenty of exercise outdoors, did physical work, and ate a very healthy diet, including a wide variation of fruits and vegetables daily. I was well even into my early sixties. My gut was always my best friend; regular, healthy, perfect. I never gave it a second thought.

Then in early spring 2018 there had been two bouts of severe icy weather. I did not mind the snow and ice, and had felt well and strong. But suddenly, one day after the thaw as spring weather finally arrived at the end of March, I felt unwell completely out of the blue. I can even recall the exact time those feelings started – at about 2 pm as I was putting firewood through the log splitter.

I began to feel an array of unusual symptoms: mild nausea, lightheadedness, a dull achy feeling over my right eyebrow, a strange sensation of inner tremor, and a weak weariness. The symptoms were present daily and refused to go away.

In the third week, I visited the doctor, who ran urine and blood tests, and found nothing wrong in my basic physical examination. I told him about a strange visual effect I had two weeks previously while out in the snow when I saw a shimmering light effect with zig zag patterns like bevelled glass. I had only experienced that once before in my life and never knew what it was.

The doctor told me it was a classic “migraine aura.” Yet he thought it was unusual to have such a long delay between the “aura” and the onset of symptoms. He decided to refer me to a neurologist.

The blood test results were normal, but my symptoms continued, and in the fourth week, I had a few days of an upset bowel. That cleared up in a week, yet the other feelings did not. They continued for 10 weeks without a break.

Then I began to have an hour or so of feeling normal soon followed by the return of symptoms. As the weeks went by, I began to feel normal for perhaps one whole day, and then longer periods of normality as summer wore on. I did not know what had been wrong, but it seemed that gradually I was starting to improve.

Yet the bouts of shakiness, exhaustion, appetite disturbances, and a nagging twinge over my right eyebrow kept returning.

After a thorough physical examination, and a CT scan of my head, the neurologist diagnosed me with “probable migraine.” That came as a surprise, as I had never had a history of migraine headaches!

I did not believe his diagnosis and felt something else was wrong with me. I began to wonder if this was really post-viral syndrome from some very unusual virus or a mild myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Two years later, in March 2020 the symptoms were still recurring, then suddenly my gut became upset again and stayed that way for nine days. That came and went with no definite pattern, but it soon became obvious I could not eat my usual foods anymore.

In summer 2020 I had tests run, which were all normal. I was diagnosed with irritable bowel syndrome with diarrhea (IBS-D.) I had always had a healthy gut before, so I knew this was somehow related to what I had been told was a migraine condition.

I went on the low FODMAP diet, which is designed to help people with IBS, and omitted gluten for six weeks, then reintroduced gluten when I found it made no difference to my symptoms. It was the same with lactose and sugar. I also found I could eat some high FODMAP foods with no problems, yet some foods on the low FODMAP list upset me. So, I tailored my diet to reduce symptoms.

Later that year I also had a sensation of blocked ears, dizzy spells, and terrible exhaustion that came and went.

I had good results with homeopathy for occasional health issues many years ago, so I decided to see a qualified homeopathic practitioner and had monthly appointments. It was a gradual process, but I did improve as the months went by.

Many symptoms disappeared. My IBS is now manageable for the most part. My flare-ups are fewer, but they still do occur. Slowly I have been able to reintroduce a few foods I could always eat prior to my illness, so my diet is basically healthy, even though somewhat more restricted than it used to be.

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Sylvia lives near Glastonbury in southwest England. Now retired, she worked as a professional musician, bookseller, author, and most recently owned and operated an online business selling herbal tinctures, dried herbs, and superfoods. She enjoys processing her own firewood, walking, and being outdoors.

Thank you, Sylvia, for sharing your journey with our readers.

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You can talk to people who are going through similar experiences to Sylvia via The IBS Network community: healthunlocked.com/theibsne...

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Stories on HealthUnlocked have an incredible way of raising awareness around certain conditions and wellbeing needs, as well as inspiring people who might be in the same situation as you. Would you like to share your health journey? Contact us to get started sharing your story now: communications@healthunlocked.com

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10 Replies
HolisticMum profile image
HolisticMum

That was so interesting. My son, who is now 31, has never had a diagnosis but we think it's like an IBS thing. Tests when he was about 5 years old never produced any answers. Medicines didn't help so we sought help of a homeopath for projectile vomiting, over the years that seemed to help. IBS symptoms come every month still. Happening at the moment he has had 3 weeks of lying on his stomach, we have to feed him. He can't communicate how he feels to us we just have to guess. So awful for him. Don't want to put him through anymore tests and always hoping we can find a miracle cure.

fed13 profile image
fed13 in reply toHolisticMum

Thank you for these two very interesting posts. I do so hope SaskiaHU your symptoms continue to disappear, and your IBS continues to be manageable now. Thank you too, HolisticMum, for your telling us about your son. I am sorry he is suffering so. It must be very, very, difficult for both you and him.

Were either of you ever referred to a State Registered dietitian for help, support and (obviously) dietary advice? Whilst probably not being able to find a miracle cure they'd be extremely good for guidance on your "journeys": someone you could talk to and with whom you could discuss it all.. Sending you both a hug. xx

HolisticMum profile image
HolisticMum in reply tofed13

I'd found my own Nutritionist/Kinesiologist through a friend. She helped me so much that was about 24years ago. We still rely on her a lot with supplements. We did see an NHS Dietician and when I told her all that I was doing via the Nutritionist, she was very impressed and even admitted that I knew more than she did. It was very nice of her to be so honest.

fed13 profile image
fed13 in reply toHolisticMum

Thanks for your reply. Good luck and all the best! xx

RedBird09 profile image
RedBird09

I have dealt with IBS since my Teenage years, It is very painful. When you have depression or anxiety or both, It affects the digestive system first of all. Im on 4 different type of stomach meds. It settles until I get nervous or something happens in my life that upsets then it starts all over. Very sick to stomach, Cramps, No appetite, weight loss or gain, myself im very small. But I have severe depression. I wish I could help you, just wanted to let you know since I have had it for 30+ It will get better for you. I promise 🙏💖🕊️🦋

RLN-overcomer profile image
RLN-overcomer

Thank you Saskia😇 for this post on IBS. I don't have any stomach issues . I eat by a book called BloodType/BodyType Diet "O". by Joseph Chritiano. I have however had that scary visual disturbance situation happen around 10 times in the last 40 years🤔. Sometimes it lasted less than an hour, and other times I remember it lasting around 24 hours🤨. Wow I will look into what the Dr. said was a Migraine Aura. Now I can describe my symptoms, and have a name for it. We can learn something new everyday. Thank you 😇Saskia, and have a blessed day/weekend

Carlo50 profile image
Carlo50

My name is Carlo, I have a strong depression but I am now convinced that I will not be able to overcome it. I am convinced that the drugs have not helped me so far and it will be difficult to overcome this disease. every day I suddenly become sad and physical discomfort begins.

HolisticMum profile image
HolisticMum in reply toCarlo50

If you can find yourself a good Homeopath, or someone can recommend one, I think this could be a good route to try and inexpensive. There is Ainsworths Homeopathic Pharmacy in London and you could ring them for advice maybe.

I wonder if anyone ever considered Fybromyalgia. Google it and compare symptoms.

OrchidKoi15 profile image
OrchidKoi15

Hi there, bowel sufferer from birth but I dont mean to be inappropriate of the ding ding ding would be parasite, particularly round worms. You need to see a parasitologist. I was a vet rect for years. The round worms gets it wrong alot and migrates to the eyes and brain. They come through feet to end up in lungs. I'm sorry. I hope I wrong but because you have so many systems involved. Do not give up. Theres rheumatologist, internist, so many Avenue. Good luck!

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