Help with IBS..

Yeah definitely - always since I was 16!

So it's actually having a head cold along with IBS then.  Do you have any things you do to treat it?

Thank you in advance.

Talk a b out being bunged up,  I have worse problems with this than my ibs.  I take a steroid nasal spray twice a day,  I also take antihistamines daily and any change in air pressure and I feel ill quickly. I'll get through masses of decongestant medicine,  I have labyrinths as well as continual catarrh too.  It's dreadful,  I've endured nasal/sinus wash-outs.  I'm bunged up thinking about it. 

Yes I have this...for a very long time. Chronic sinus problems. It is a symptom of auto immune disease.

Do you have just ibs or gastritis? 

I have gastritis

I don't have ibs. Gastritis is often misdiagnosed as ibs.

I don't think I have an auto-immune disease, but what I have makes me very uncomfortable.  I am without a job right now and I'm nearly 65.  I need to be working but I don't know who will hire me the way my body is now. 

If you have nasal problems ibs symptoms and other issues going on you have to rule everything out. Not sure how long you have been unwell for and not sure if you have other health problems at the same time as the the things you have mentioned. Wonder what your blood tests show.

I've always had a few sinus problems, and have had terrible infected sinuses where I had to use steroids to help reduce the inflammation, I also develop colds soooo easily!! I never knew this could be linked to IBS!? 

- this is all new to me finding a link between the two, I feel surprised.. this may explain why I am so bunged up all year round. 

Sunny Sky X

The reason for this may be that because your body is busy fighting IBS, It doesn't have enough energy to fight off colds and other infections.

Hi, there very definitely can be a link between the two. I am a lifelong sufferer of both gastritis (misdiagnosed for many years as IBS) and the inflammation in the sinuses. I have an underlying auto immune disease and that is what causes both of these conditions. I am currently prescribed with Plaquenil which I was given last week and it is settling the inflammation in my sinuses and also the gastritis (to a certain extent). I wonder if you've ever had a gastroscopy to rule out inflammation in the stomach.? 

Also I would ask for blood tests to be done to cover esr crp and ana. This is not always done and can be useful in diagnosing what is going on. I don't think inflammation in your sinuses is related to IBS but can be part of an auto imflammatory disorder. It is a confusing area  and often mistreated/misdiagnosed. 

Your frequent colds and infections also point to immune system disorder. I am 54 and suffered similarly for all of my adult life. Took me til I was in my early 40's to get a proper diagnosis and realise that it was all part of one disorder. 

Hi Margaret, 

I've never had a gastroscopy, but I am going to ask my GP to refer me to a gastroenterology specialist, then hopefully I can get a solution to all my problems. I seen a gastro specialist a few years ago but didn't really get anywhere with it. 

I've recently had some blood tests done for another condition and my crp was one of them so I'll let you know the result and if it shows anything. 

All the best, 

Sunny Sky x 

Hi yes gastroenterology were a bit useless to me. I saw one when I was going through diagnosis. I was referred to him by a rheumatologist. He saud I had ibs which I strongly disagreed with. He did endoscopy at that time but not a gastroscopy. I was also referred to an immunologist at the same time. I was diagnosed by the immunologist. When I saw him and told him what was wrong with me. I asked if he had ever considered thst diagnosis. He said he had never seen anyone with that illness before! He just wasn't that good.

You say you have something else going on. I wonder what it is? Maybe you'd rather not talk about it here? If so that's fine. But I had several health issues I thought were unconnected but were. X

Hi Margaret, 

I don't have any belief in certain doctors sometimes! at least you seen the right person and got to the bottom of what it was. What is an immunologist? I may ask my doctors if they can refer me to see someone like that as I have lots of chronic health problems, and get passed between doctors and specialists constantly, I just wish someone could look at the whole picture rather than each condition individually. 

As well as IBS I have hemiplegic migraine, hyper mobility syndrome, fibromyalgia, a chronic fissure tear (had operations and lots of treatment nothing has worked so far) and a new condition my doctor thinks I have is; 'POTS' I have been referred to cardiology because of the different heart symptoms I have been having. 

what health problems have you had? were they all linked at all? 

All the best,

Sunny Sky X 

Hi just read the comment above. Sorry but very sure you have something similar to me which could explain all your problems.

I have had many of the sane symptoms....migraine stomach/bowel issues joint problems eye problems heart issues (pericarditis heart palpitations heart murmur when I get bad colds or flu). Dizziness ...so many isdues over the years. Sinus issues Burning inside my nose recurring sinus infections. Changes to my sinuses caused by long term inflammatory problems. Mouth ulcers.

I have a form of vasculitis. There are various forms all of them with overlapping but differing symptoms. All of your symptoms...like mine...can be attribuyed to one underlying cause. Very difficult to diagnose. Most doctors don't consider it. It is really an area for a particular kind of specialist. Are you in the uk may I ask?

Hi Margaret, 

Yes I'm in the UK, ohh wow! how strange how I have lots of similar symptoms as you, maybe I need to go back to my doctors and ask to see a proper specialist who can look at all my problems and maybe help put it all down to one condition! 

- how did you get diagnosed? was it through the immunologist you mentioned? 

Sunny Sky X 

Hi Sunnysky,

I've been on a downward spiral cfs/raynards/inflamation for a good few years, however the last 18 months has been the hardest and had much time off work.

My ibs became chronic around 18years ago and as time went on began identifying symptoms directly connected to food and drink.

The first to go was milk...i had developed nasal inflamation/mucous triggered by milk on my cereal.

I stopped milk and the symptoms elievated.

Few years down the road I stopped bread- identified it was making me bloated and tired.

Gradually eliminating all grain products.

As time has gone on my reactions have become so abundant that I am limited to a few pulses, salad potatoes and carrots.

The FODMAP diet drew my attention to brasicas which causes me a lot of gas an bloating, onions and garlic the same.

I have delved deep into food intolerences /sensitivity and allergies. And it's a mine field for choosing 'safe foods.

I now react to all types of food....recently I discovered that spinach is high in histamine, which would immediately make my nose stream.

Nuts is another, dairy , high histamine foods.

The uptake from all of this is my reactions may be partially based on genes- my father, sister and nephew all have allergies and my sister ibs As well.

However I am now looking into the emotional response to situations/environment.

I have noticed that my gut can inflame following a stressful situation/event even without food.

So......maybe CBT/meditation/ healing a gut with a professional nutritional expert is maybe the way forward.

I guess this is not a 1 cure fits all, no 1 tablet or approach will produce a relaxed happy digestive system.

It's finding out what your triggers are, get some proper expert advice, and don't put anything inside you that has been processed.

Your gut does want to heal, you just need to find the right nutrients for you.

Good luck all...and BTW if anyone knows of that magic pills, I'm all ears.🙄

Ps healing gut products that you may find useful....l glutamine, bonebroth, zinc, probiotics...

Do it sooner rather than later.

Dont rely on prescription drugs, they don't cure you, just mask your symptoms short term.

Don't leave it until your condition develops in to a bigger problem.

And don't be robbed off by your doctor.

Your body is sending you strong messages that something is not right.

Best of luck, and if anyone has any suggestions for Fibro and the link with l***y g*t, or anything activated with that and autoimmune I would appreciate any feedback/advice.

[b]Moderator comment: I have edited this post due to its medically unsubstantiated claims. We do not support these types of claims and we recommend seeking advice from a health professional[b]

hi, I had most of your symptoms not all ...I have a form of vasculitis and one medication did make it all go away. Unfortunately there is no cure for vasculitis currently and the medication will make it go away though it will come back if I don't have any meds. I had great success with interferon alpha. No symptoms at all. I had good results with mycophenolate mofetil. I am now in a strange partial remission. STopped interferon and mycophenolate last year. After a year of complete remission symptoms beginning to come back ....have had a return of inflammation in my sinuses and in my stomach. Also very sore joints in feed and tendonitis. Plaquenil is helping with that. So there are single drugs which can alleviate all of these symptoms. But yes, they are temporary and not a cure. I'd still take the temporary relief - I had four glorius years without the migraine stomach issues chronic sinus inflammation and joint problems. I am willing to chance medication so I don't have to live a life of pain. But each to their own. When on interferon I could probably eat tyres and not have a tummy upset! That's worth it to me after years of suffering lots of symptoms like you. Wish you the best. 

Thank you , the medication is something I will look into, and as you said it's not a permanent cure..but maybe it will kick start me getting my life back on track.

Am I right in thinking that interferon is an enzyme the body produces naturally In order to fight infections?

I had a enlightened conversation with a nutritionist this morning regarding energy, inflammation and pain.

It made complete sense that the gut when inflamed triggers an immune response.

Inflamation follows a 'felt' pain - as it does if you injured yourself- its the same mechanism with all percieved invader/attacks to the body. Long term chronic inflamation can put such a massive stress on the immune system that it has to prioritise what it heals first, and it makes sense that the gut is the lesser of important organs compared to the brain, heart and lungs for example.

So again in my view the gut is first port of call when it comes to healing.

The take home from today's discussion is that there are many initial causes to gut inflamation and therefore an individual personalised plan needs to be implemented....and by a professional nutritionist, practioner that is up to date and passionate about there subject and healing.

Thanks 😊 feeling a little more positive and informed x

Hi there, yes interferon is naturally occurring. And I saw it explained somewhere....very sophisticated medication.....it helps re calibrate the immune system by enhancing the body's ability to fight inflammation and also has anti viral properties. Apparently, my specialist tells me, people with vasculitis already have a high level of interferon but for some reason pumping more into the body helps the immune system to respond properly. 

I can only really say on the receiving end of it, I went from being terribly unwell to being completely normal. It was something of a 'miracle' for me when I first tried it. I took it first for 6 months as part of a study group. I then spent some time trying to persuade medics to prescribe it again and they wouldn't. I changed specialist and found someone who admitted they didn't like using it but gave me it because they said 'if it's working for you why argue with it'. So I have done 3 courses of it now, the last one being 3 years long and it was life changing. After an adulthood plagued by illness my life changed within about 2 injections. No stomach issues, no migraine, no sinus problems, no joint pain. And changing diet was completely unrelated. I eat what I want and have no bowel issues when taking interferon. 

Anyway, I encourage those of us out there who are unwell to get a proper diagnosis and find a specialist who understands what they are dealing with and find out which of the numerous treatments which are available will work for them. Because believe me, it's easier to be positive, upbeat, to exercise to take control of your diet etc etc when you have a break from pain and suffering. We all deserve the best of care and treatment. x

Hi modelar, 

I understand completely all your symptoms you are going through, I tried the fodmap diet for about 4/6 weeks and noticed that wheat completely flared my symptoms up! My specialist has told me to stay away from any fruit/veg which has skin for example apples and peppers as skin on these foods makes it hard for the body To digest making my IBS symptoms worse, some of the things she told me to eat in my diet are butternut squash, sweet/normal potatoes, hummus, and avocado. Although what works for one person doesn't work for another, its good that you've found certain foods what flare you up. but I completely agree emotions can flare it up, especially environment if I am in an environment where I am nervous or stressed then my IBS goes through the roof! sorry for such a short reply, I'm in work so cannot reply properly. Hope you manage to find something to help you - if you do keep me posted as I haven't found much yet. 

Sunny Sky X 

Hi Sunnysky,

I'm not feeling as positive today, been more or less in bed for days with awful, unrelenting symptoms, day and night, no real sleep.

What really upsets me is the lack of support, tests, I get from my GP.

The usual CRP And ESR tests come back normal, yet I feel stiffness in my joints, particularly in my hips wrists, lower back.

Also an inflamation that occurs particularly in my right foot, face/eyes, hands And all down my back.

Can anyone differentiate- stiffness, aches, inflamation, or does it all originate from inflamation.

More over why are my test results normal range when my body is feeling otherwise.

I seem to have no evidence of this disease being real, yet I know it's biological.

I'm desperate for some validation, other than it's all in my mind.

Anyone have any thoughts on this?

hi modelar...well yes I have just been suffering from really bad inflammation in my sinuses, pain in my feet like majorly. Was affecting my walking. But I am already diagnosed so I don't have to 'prove' myself any more. Went to see my specialist. Blood tests were normal. But he says he is not driven by blood tests because he knows with my illness blood tests can be normal even when there is inflammatory activity going on. It is a bit of a nightmare really. If your gp is stubbornly refusing to refer you on either you go private for a one off consultation or, if you live in the uk, phone the vasculitis uk helpline which is free to call. Have a chat with them about your medical history and ask them what to do when you're having normal test results but still feeling ill. They have info packs they send to gp's etc and may have good suggestions about what to do if you're not being listened to. 

Vasculitis helpline 0300 365 0075

Hi Margaret, I do live in the UK, so yes I will call them tomorrow.

Thank you , sometimes I just need the reassurance that I'm not going crazy.

I looked into the interferon treatment, and I suspect I'm a long way off getting that through the NHS.

I have asked for a referral to see a specialist gastroenterologist who apparently has worked with patients with fibromyalgia...but that may take weeks/months.

But I will ask him about interferon when I see him.

Just out of curiosity, are there links between ibs and vasculitis?

yes absolutely. Vasculitis is an umbrella term for several disorder Sjogren's Behcet's Wegener's Lupus. All of them can cause gastro intestinal disorder. Sorry but gastro were useless to me. Speak to the guys on the helpline and go through your symptoms with them they are really helpful and very nice. 

oh and also Reynauds phenomenon is also common in people with vasculitis. x

I will thanks, will let you know x

Nothings straight forward is it? 🤔😉

No indeed modelar and sadly if it is something similar to me you have to be very determined to get a proper diagnosis. The docs just fob you off continually and suggest you are stressed or depressed or both. They almost convinced me I was. I used to think maybe I was seriously depressed and just didn't realise it until I realised that some docs are just not very good at their job! x

Yes , I agree.

There have been many times I've been demoralised after visiting my GP and felt like giving up.

And many times felt like I'm a time waster.

Luckily we now have the internet/YouTube .

Don't know where is be without it. X

yes online support is great. I am a member of vasculitis help groups on facebook and people are just great. They are so open to sharing info and giving support. We also do a bit of off topic stuff which is nice and groups are often international so we meet a real cross section of people all with one thing in common but very different lives. And we give each other the support of knowing that things we're experiencing are part of the illness because even after diagnosis docs can be so rubbish and dismissive.