Colitis: My confusing Gastro & 'Medically unexplained'?!? related illnesses

[manners]

Hi all,

I'm sure everyone on this board has had a strange or frustrating appointment with a gastroenterologist. I've had some wonderful ones and some utterly dismal. To cut a long story short, my most recent appointment has me confused, frustrated and worried and I'd really appreciate some input from others.

A few months ago my stomach stopped digesting food. I would eat something, it would sit in my stomach for up to 7 hours until I vomited it back up looking EXACTLY the same, as if time in my insides had had literally no effect on it. As a result I lost 5kg in the first three weeks, was unable to eat anything substantial or solid (and eventually couldn't even swallow my medication) and was given meal replacement liquids to get my calories up beyond 300 a day. This was eventually resolved with a 7 week course of Motillium 10mg 3 x a day, which eventually kick started my stomach once again.

I was very worried about this episode and desperately waited to discuss it with my gastroenterologist. However, he was unmoved. He said, and I quote "there are many things that occur in Colitis patients that are medically unexplained. This may be just 'one of those things'". This leads me to believe that it is something frequently seen in Colitis patients, but I cannot find any studies indicating this.

So my question is this: has anyone else experienced such an episode, and if so, what did your gastro say... if not, then has your gastro said something similar about 'medically unexplained' related problems that we just have to live with?

So far, I am just totally confused.

[Marz]

I can quite understand why you are confused. It seems so many things are not understood by Specialists. Do you know if you have LOW stomach acid ? As that is the first and important bit if digestion. Without acid food cannot be broken down into smaller molecules so it can pass into the duodenum. What medications are you taking ?

I have not experienced your problems so am not being very helpful - I have had Crohns for over 40 years after gut TB - Hashimotos diagnosed in 2005 and have a B12 issue due to so much gut surgery - but so far my stomach has been fine.

Do hope you find some answers. Have you considered going gluten free to reduce the gut inflammation ?

[manners in reply to Marz]

Thanks Marz,

I have severe GORD as well, so I have been taking Omeprazole and Ranitadine every day for over 6 months. I suggested to my gastro that the Omeprazole might cause delayed emptying as it seems to occur most when I'm taking it, but he said it absolutely doesn't do that. So I think maybe the non-emptying stomach is what causes the GORD to flare and not the other way around. I had an emergency endoscopy when I couldn't swallow at all and it showed nothing but bile reflux. So I thought it was maybe nerve related? I just don't know how it's helpful to tell me there's no explanation for it, because that means it can't be helped.

[Marz in reply to manners]

Omeprazole lowers acid as you know - when it is possible you already have low stomach acid. This will of course exacerbate the problem. PPI's are big earners for Big Pharma and should only be an 8 week course - due to causing malabsorption. Maybe the PIL will say this.

Have you considered going gluten free ?

Have you ever had your thyroid tested ? Low thyroid is so often accompanied by gut/bowel issues - and also low acid. The Active thyroid hormone is T3 and the the second highest amount of receptors for this hormone are in the digestive tract. The highest amount in the brain. Every cell in our body has a receptor for T3 - so it is vitally important and yet rarely tested on the NHS.

Also I would suggest the following tests - B12 - Ferritin - Folate - Iron VitD - these are not routine tests and need to be specifically requested. Sometimes Docs are supportive - sometimes not. You can have them done privately for a reasonable cost. The levels are needed to be optimal for you to feel well and not bumping along the bottom They are the building blocks of our wellness.

You can click onto my name to read my Profile and about my journey to wellness. It has been a bumpy ride - but not as I hurtle towards 70 I am stronger than ever ..... It can be done but we have to do so much research - reading and learning for ourselves.

Have you considered Pernicious Anaemia - as that can cause stomach issues ..... There is a Forum here on HU with lots of very knowledgeable people. Again Docs seem to know so little.

When stomach acid is low or has been lowered - then food cannot be broken down into smaller molecules and will remain in the stomach for too long before the onward journey into the duodenum. This food will then ferment and it is the upward movement of the fermentation than can cause the GORD.

I am happy to provide links to good articles for you if appropriate ....

[manners in reply to Marz]

Hi Marz!

Thanks for getting back to me. It's really interesting that you bring up the low acid and PPIs because I said to my gastro that I thought the PPIs were causing food to take ages to digest because of the lack of acid and he said this doesn't happen with PPIs because the food should be pushed out of your stomach anyway after a certain amount of time, acid or no. So we both think that actually it's the other way round, that the stomach immobility is causing the reflux, because every time the GORD is really bad, food sticks around for ages. I had a Ph Manometry test that showed normal oesophageal function and bile acid reflux, which fits a stomach motility problem best.

I have been tested for thyroid and anaemia a LOT of times and I don't have either. My iron is also fine, but ferritin and folate are always boarderline low. Weirdly, I had an inconclusive test for Coeliac disease that they felt we didn't need to follow up on.

In my most recent gastro appointment, he said he wanted to take me off omeprazole, but the last time they did that I had two years of horrible lung infections, even being in hospital with pleurisy, because of aspiration of acid into my lungs, and my teeth got absolutely destroyed, so I said no. What can I do to avoid malabsorption while taking PPIs? Is there any way to do both?

Thanks again,

Jodie

[Marz in reply to manners]

I think it would be interesting to see your thyroid test results that are allegedly fine. Did you see the actual results and obtain copies ? They often only test the TSH - which tells you very little about the Thyroid and its activity.

It is important to know the level of the FT4 and the FT3 as well as thyroid anti-bodies - Anti-TPO and Anti-Tg. The incidence of Hashimotos - or Auto-immune Thyroid is the most common throughout the world - and yet I am betting your anti-bodies were not tested.

LOW thyroid and LOW acid along with LOW Ferritin - Folate - B12 and VitD go hand in hand. So you say you have had your thyroid tested many times - so what was the FT3 result that I mentioned in the post above ?

I have been on the Thyroid UK forum for many years and my knowledge is sound. One thing I have learned from the 40,000 people there is that GP's have their hands tied and do not test adequately in order to uncover the root cause of illness.

Have a read of my Profile by clicking onto my name - and that is the edited version. I have learned a lot on my journey to wellness and now self treat and take care of myself ....

You could try natural solutions for your stomach issues - have you heard of Betaine-HCL ? ACV ?

Have you considered PA ? Do you know your B12 level ? If your Folate is low then it is possible your B12 is also low as the two work together in the body

Healing the gut is so important - so going gluten free should help. It has taken me 3 years to reduce my thyroid anti-bodies after going GF. Only when the gut has healed will you improve the absorption of the vitals.

Even with a negative test for coeliac - you can still be Gluten Sensitive .... Having read the book by Dr Datis Kharrazian - Why Isn't My Brain Working ? - I was convinced to give up gluten as the gluten molecules can cross the blood/brain barrier and cause inflammation.

[birkie]

Hi manners

I can tell you of my experience,,I became ill in Aug last year I had server diarrhea and I was vometing any food I put in my stomach like you it looked undigested. I went to my gp but was diagnosed with a stomach bug!! This went on until Nov when I started to vomet blood up and my gp eventually admitted me in to hospital, my gastro consultant took scans and said you have colitis all my insides were inflamed my white cell count was very high and my red cell count was low..I had the camera down my throat which also showed H piylor!! I could not have the camera in the back passage as I was still having watery bowl movements and was still in server pain with cramps..I was discharged after seven days they had me on antibiotics/omeprazole/buscopan and equestrian light! I continued to have diarrhea for the next two months and started vomiting again but my g p said it was the antibiotics..I eventually had the camera in the backpassage! He took biopsys of the bowl I got the results back saying apart from some inflammation in the stomach the test for colitis was unremarkable!!😮 I still have bouts of diarrhea and sickness just yesterday I had the worst cramps since being admitted to hospital!! And I'm still having trouble swallowing,,food seems to regurgitate back up in to my gut where I have to swallow it again! I have an appointment with my Castro consultant in Aug twelve months to the day this all kicked off ..I will be asking some questions about the way I'm still feeling 12 months on and what the hell happens to my bowl/stomach!! He prob won't like me probing him on my illness but I'm not leaving until I get my answers..I suppose its what we have to do to get anywhere with doctors/consultants like you iv been left like this without real explanation!!😤

I hope you get sorted too😊

[manners in reply to birkie]

Hi Birkie,

So sorry to hear about your troubles. It sounds utterly horrible. It took a second hospital admission for me to get the diagnosis of colitis. I don't understand why you haven't be prescribed steroids on coming out of hospital? That's always been the routine for me. Don't feel bad about probing, you have all the right to know what's going on. I always prepare for my visits by writing down all of the questions I want to ask and taking someone with me so that they can try and remember the answers as well as me. It sounds like both would be useful in your situation.

It's interesting that you've also had the stomach issue alongside the colitis. I'm starting to wonder whether maybe Colitis is more like Crohn's than I thought. I was originally told that it just affected the large bowel, but now I have stomach, oesophagus and arthritic problems alongside fibromyalgia and a bunch of weird neurological issues. It seems like they just keep piling on. :-(. I hope it won't be the case for you.

Do let me know how your appointment goes. I think it's important that you ask why you always have stomach problems alongside the colitis because none of the stuff online that describes our illness mentions any of these things.

xxx

[birkie in reply to manners]

Hi again manners

Didn't say in my first reply to you,,the Castro consultant had me on steroids for four months😬 I gained over a stone in weight eventho I was not eating solid food just watered down soup!! I'm still trying to loose the weight😤 I also have ME/fibromialgia and just been diagnosed with ostioathuritis(don't know if I have spelt that correct lol) I really didn't need the trip to hospital with colitis ect!! I'm going threw enough also my thyroid has been playing up too😤 so as I said I'm going to be asking the consultant a lot of questions😁

Good luck with your fight

Birkie

[manners in reply to birkie]

Blimey! Four months? You probably want to check with your gastro whether you should have a bone density scan. When I was on steroids for three months they ordered one because corticosteroids can strip the calcium from your bones, gradually thinning them.

The weight you I got with steroids was all water retention. I wouldn't be surprised if yours was mostly that too. Obviously steroids do make lots of people gain fat too, but if you aren't avoiding salt you will also put on water weight. I ended up with moonface. I looked like a ruddy hamster.

It sounds like you have as many overlapping problems as I do, all-be-it different ones. I hope things start looking up soon. Sending hugs! xx

[jostafford0]

Hi Manners, I used to say my 'food is stuck in my stomach'. This was years before I was diagnosed with UC. It was 8 years from displaying symptoms to being diagnosed with UC. Do you have mucus in your stools? I had that for years which GP's could not explain but I know now is a symptom of UC. Jo xx

[manners in reply to jostafford0]

Hi jostafford0! That's essentially what I have been saying as well. 7 hours is definitely far too long for food to be sat there doing nothing. Have any of your doctors ever told you it's just something that happens with some people with UC? And is your stomach problem only there when your UC is active? I do have mucus at the moment, but I'm also definitely 100% in colitis flare. I've had positive calprotectin results. The weird thing is that the calprotectin was negative all the way through the stomach issue and the colitis only started after the stomach thing was resolved. So I don't understand how it is caused if not by inflammation?

[jostafford0 in reply to manners]

Hi Manners, I never thought my 'stuck in the stomach' issue was to do with UC until you mentioned it in your post. I suffered with it for years before I was diagnosed and don't suffer with it now. What I get now is an irritated stomach with bloating and diarrhoea. I don't know if this is UC though as I also have an under active thyroid. When I get the mucus and blood now I stay off dairy and take probiotics (advised by my nutritionist) and it usually goes away. If not, I take suppositories or steroids. I hope you feel better soon. Jo xxx

[manners in reply to jostafford0]

Hi Jostafford0! I thought I'd get back to you and let you know that I think the stomach issues I'm having are actually a type of autonomic neuropathy. My friend has PoTs and said it sounded like a type of dysautonomia, so I went on the dysautonomia international website and, low and behold, there is a section detailing 'related illnesses' with Chrones and Colitis as one of the main ones. It says that up to 50% of people with IBD have related autonomic neuropathy, sometimes just affected the vagus nerve (controls stomach and other gut muscles). Up to 50% was a bold claim considering none of my gastros mentioned it, so I looked up medical journals on the subject through BMJ and there is a heap of evidence for it. So, 'medically unexplained' may not be the right phrase, rather 'explained but not fixable' because neuropathies are ney on impossible to treat. It also explains the other symptoms that I'm waiting to see a neurologist about, such as lightheadedness on standing, random palpatations, random breathing difficulties that are not asthma (like being awoken feeling like someone's strangling me when they're not). Since I have an upcoming appointment with neurology, I'll let you know how it goes.

[jostafford0 in reply to manners]

Hi Manners, thanks for letting me know - I've never heard of autonomic neuropathy but I am interested to read more about it.

Have you had your iron, vit B12 & vit D checked out as your symptoms sound like a nutritional deficiency? I have low B12, D & folate and have had chest pains, heaviness, shallow breathing, dizziness, palpitations, numbness in arms over the last month. I'm now on supplements and feel much better although still have horrible tiredness.

Jo x

[manners in reply to jostafford0]

Hmm! I'm not sure actually. Are they included in a 'full blood count'? Probably not, in which case no, I don't think so. I have had them all checked before, but perhaps not recently. I did have folate and that was boarder line, but not low. I'll ask next time I'm at the GP. Thanks for mentioning it.

I hope the supliments continue to improve things for you.

xxxx

[willow24 Administrator]

OMG do you have the same consultant as me! Iv just come out of hospital after several weeks. symptoms severe right sided pain, vomiting after eating and nausea, plus spikes in temperatures. Iv been pushed from gastro to gynae who did laparoscopic exam and removed adhesions then just discharged me with Gastro follow up. I am still non the wiser except for being told I possibly have strictures in small bowel (I have crohns colitis large bowel)

I now have sore tongue and corners of mouth split due to vit B deficiency from not being able to eat or digest nutrients!

[manners in reply to willow24]

It sounds like you're really going through it. I hope things start to look up soon. It's horrible when the malnutrition sets in.

If your gastro is in Cambridge and is an arrogant, cryptic, tiny old white man, then maybe. At one point he assured me that taking Cambridge University exams is definitely more stressful than anything else I've done in my life; despite me telling him otherwise. Apparently he understands my subjective experiences better than me, which really is quite the super power.

I have to stick with him for now as my normal gastro wasn't available until weeks later and I was desperate to see someone. He's referred me for gastroscopy and I'll see him again in 6 weeks. If at that appointment he says 'see you in 6 months', then I will ask to move back to my original, far wiser and kinder gastro.

Damn the luck of the draw.

[willow24 Administrator]

you can ask to see another gastro from a different hospital if your not happy with advice you are getting from current gastro.

good luck x

[FRreedman]

I cannot believe that in this day and age,we,as patients, are expected to accept the consultants position as G-d. Ask a question get an answer that at least makes a bit of sense or, immediately request a second opinion. Do not worry about your doctor's feelings they will recover. I can only reiterate my numerous earlier responses Go To the Tops for bottoms. St Marks at Northwick Park Hospital in Harrow (North West London) may be a long journey, but I swear the only reason I am alive today is because They only deal with disease and cancer of the bowel, colon and digestive tract. Every hospital has a consultant on most diseases. They have consultants only on different parts of the digestive tract.

Put it this way, when a consultant at a general hospital doe his rounds, he is followed by an entourage of up to 15 student doctors. When a consultant does his rounds at St Marks he is followed by an entourage of up to 6 or 7 consultants , in their own right together with a further entourage of students. I have said it before and I will say it again ST MARKS is Tops for Bottoms . support their charity appeals if you can , but for the sake of all that is sacred let them help support you in your time of need. By the way I am not on commission for referring patience, but I am probably making harder for me to get appointments when required. I live approximately 100 miles from this hospital, but have made it my hospital of choice for any bowel related problems. A very satisfied patient.

[manners in reply to FRreedman]

I wish I had a stomach expert right now. Is it an NHS hospital, or are you on private insurance? My family and I are always saying that I wouldn't be in this situation if we actually had money. But alas, we don't.

[sandybeach12066]

find another gastro that is crazy to be like that and be told you just have to live with it, I also am on my 3rd gastro doctor I just saw him and have some hope. I hope you find a good gastro and I hope you feel better soon.

[manners in reply to sandybeach12066]

Thanks sandybeach! I have requested to change before, so I have no qualms about doing it again. The problem is that I missed my appointment in April. It was brought forward because I couldn't eat, but I missed it because I picked up a stomach bug and was vomiting constantly for two days. I called many times on the day and they tried to get me into hospital for the appointment, despite this bug being highly contagious. I couldn't believe it!

The bug then set off my colitis, but the hospital refused to book me another appointment near to it and instead I had to wait another 4 months. They sent me an appointment for mid June, then cancelled it a few weeks later and made it early July. I called up and had a right paddy at them for constantly messing me around and they changed it back to mid June, but not with my original gastro (who is wonderful). Now I'm stuck with this arrogant little man with a God-complex :-(.

He said he'll see me after my gastroscopy in 6 weeks, so if I then go back to just routine appointments, I will ask to change back. I really can't be dealing with him. Being sick all of the time is hard enough as it is.

I hope you are well x

[sandybeach12066 in reply to manners]

the exact same thing happened to me in in January got a bug and it flared up my colitis bad , I missed a month of work, I don't think these doctors get how bad this can be! I wish you the best!

[FRreedman]

Sorry it has taken me a few days to get back to you , but if you wanted to know about St Marks, it is NHS and Free at the point of need for all patients. You can pay, if you want to be upgraded to a private room. But my personal experience is the patients in the six/eight bedded ward interact well with all the other patients, and doctors (cos see them doing the rounds with other doctors) .Hope you feel better soonx

[FRreedman]

If you were to be taken unwell just as you happened to be walking past Northwick Park hospital in Harrow, and had to attend their A and E department, then you would be seen by a St MarKs doctor shortly after vyour admission. (As long as your initial unplanned stomach bug attack was deemed serious enough to warrant it. The alternative is ask your GP for a referral

[Lacey2]

Oh, Yes! Been seeing Gastro's for 40 odd years, lived on Buscopan due to pain in lower right side. Year ago emergency operaion due to development of vaginial fistula, entire sigmoid colon removed by surgeon. Been back to see gastro only once, as he feels not necessary to come in more frequently then once every 6 months. During this period, suffering extreme pain, seeing pain specialist to guide on pain medications. On my own, and with help of local doctor back onto cortisone, mesalazine, metrotrixate. To stop the runs, lomit as it acts quicker, and 2 paraceadol/codine to bulk the bolws 4x daily. But, the pain continues. Apparently it is an ündiagnoised bowel condition", yet one time told it's crohns, onther time it is typphlisis. No accurate diagnoise made, lots of blood test, calprotectin tests, which cost $99 each, not covered by Medicare or insurance. Last blood count at 20,000, next one better, sitting at 14,000. Still no diagnoises! The pain is excruicating, like a raw tissue which burns very deeply. I feel that my gastro has lost interest because he has not been able to give a disgnosis, he wants to see a treatment and a healing, and get out of here! Just my opinion!

What does everyone one else thinki?

[Helend67]

Hi I have the same symtoms .I have ischemic colitis but also have gastroparesis which the hospital have diagnosed because of those symptoms. . I only have supplement yoghurts now. No solid food. But type 1 diabetic so it's a complication.