After review with consultant

[ineedhelp786]

Hi everyone, I hope everyone is well and managing their symptoms.

Just to provide a history of what’s been going on. For over a year I have been having problems with my stomach.

- a feeling of fullness and bloating in my stomach. This is always present and never goes away regardless of whether I eat or not

- loss of appetite, I don’t feel hunger at all. I am eating for the sake of eating. I don’t feel hunger pangs at all. I was fasting in ramadhan for 18 hours and did not feel hungry at all

- although I use the bathroom most days on a morning I feel I am not completely empty and feel constipated. I know this is not the definition of constipation as I am using the bathroom once a morning.

- I know this sounds weird but I feel my lower stomach is not working

- the bloating is so bad I feel My breathing is restricted.

I have tried peppermint oil, buscopan, mebeverine. Nothing has alleviated any of my symptoms. I have had colonoscopy, endoscopy, ct san. The first two revealed inflammation. I am waiting for the results of the ct.

I had the appointment with the gastroenterologist, I came out very disappointed and disheartened. He said that these symptoms are really hard to manage and in most cases they don’t go away. I feel sad and can’t help but accept that these are the cards I am dealt with and this is what I will need to live with. My life is hell, I don’t feel like exercising or going out.

Can anyone please help me?

[Linley]

Don't really understand the Gastro's bedside manner-think he has made things worse for you, never give up there must be something out there to ease your symptoms.

If you are female suggest you get a CA-125 blood test just to make sure there is nothing wrong there. With my religion we use to fast on a Friday only- pleased its not compulsory now as when I broke my fast I used to get pains that was long before my IBS was confirmed. Now I make sure I do not go more than 3/4 hours before I eat something, it has helped me. Good Luck!

[ineedhelp786 in reply to Linley]

Thank you so much for your reply. I just don’t know what to do. Thank god i don’t have pain but it’s the persistent fullness and bloating which is getting me down. I don’t know which avenue to go down. I had a lot of plans for the future but I just feel down and uncomfortable all the time and don’t feel like doing anything

[damiante]

Hello ineedhelp786, i am in the same position the difference is that i have peptic ulcer, since january still pain everywhere, taking pills not helping and constipated, hopefully you will feel better, take care.

[ineedhelp786 in reply to damiante]

thank you so much for your reply. I am 26 and just upset that i have these problems when i want to move forward with my life.

[auntyjean]

I didn't get much help from the gastro consultant so I found a private clinic and on the basis of the consultation I paid for a comprehensive stool test which showed up large infestations of 2 parasites. These can cause the symptoms you describe. Also they destroyed all my good gut bacteria. This test is not available on the NHS.

[Monkeypuzzler in reply to auntyjean]

That is interesting to hear. Can you advise what treatment was recommended please?

[auntyjean in reply to Monkeypuzzler]

Standard treatment is metronidazole which I recently had as a last resort as started by building up good bacteria which helped for a while then worse again. I also tried Chinese medicine along with the probiotics but again helped for a bit then worse again. I am back on VSL#3 probiotics now to try to build up gut.

[Monkeypuzzler in reply to auntyjean]

Many thanks. I will look into that.

[ineedhelp786 in reply to auntyjean]

hi what is the name of this test? thank you for your reply

[auntyjean in reply to ineedhelp786]

It's a comprehensive stool test by Geneva Diagnostics.

[Copp]

I have very similar problems, except the feeling of fullness. I squeeze 3 fresh oranges first thing in the morning and drink that, followed by other fruits. This helps me to pass stools a couple of hours later. By about 1 o'clock I feel hungry. Giving up junk food and decreasing carbohydrates has helped a little.

Please don't give up exercise. Few stretches and jumping/skipping does have a positive effect. Make it part of your daily routine and keep your mind busy.

I feel it's something I have to live with now, and try not to allow it to rule my life.

All the best to you.

[ineedhelp786 in reply to Copp]

thank you for your reply. i get really bad burning in my stomach if i eat oranges.I was absolutely fine till a year ago and now i am at wits end. Dont want to live like this

[Copp in reply to ineedhelp786]

May be replace Orange juice with a couple of mugs of pre boiled warm water, if you can manage it.

[one-n-den]

Hi,

I hesitate to comment, as I’m not sure your problem equates to mine, but here goes!

Have you tried a fibre supplement such as Fybogel?

I find that it helps ‘regularise’ bm’s - whether the problem is constipation or diarrhoea.

It may help you pass stools and feel hungry. It’s available without prescription and is a natural product.

Hope that helps.

[vickilynne]

Not exactly sure if this will help but does sound like you have excess acidity. Especially as you don’t feel hungry at all; I get this too.

I’ve just found a book called The Acid Watcher Diet by Dr Jonathan Aviv. He’s an American gastro doc. I’m going to get it. It’s a 28 day plan and people have found it very helpful ... lost weight, improved bowels, got off meds through sticking to the plan.

[ineedhelp786 in reply to vickilynne]

Thank you so much for your reply, I think I do have excess acidity, during ramadhan I would burp and then bring up acid even in a fasted state

[Chancery]

Hi, I'll just run a few things past you in case any of them help:

1. Have you been tested for coeliac disease? If not that's an essential. Easy & quick to do with your GP.

2. Have you been tested for H. Pylori? Again, easy to do through NHS.

3. Have you tired charcoal tablets? Just take 2-4 of them after a meal. They work wonders with bloating and are very easy (and cheap) to obtain.

4. Likewise ginger. If you take a ginger tablet BEFORE eating, then charcoal after, you should find this improves bloating a lot.

5. WindSettlers tablets. These are a simple OTC medicine available in any shop, although I get mine on prescription, because if your IBS is active you can go through a LOT of them. It is simple simethicone (100mg) but it is very effective. You may need to pop them all day, but they do work. I find them best because they have no peppermint in them. Peppermint is good for breaking up wind but it is very irritant to the oesophagus and the stomach, so if you suffer with reflux it will make it worse.

6. Gallstones. This is a very common condition which, bizarrely is often overlooked by GPS. As you are young, they are even more likely to overlook it in you as it is considered a disease of middle-aged women, but young women DO get them. I had a friend who got them when she was 17! I had gallstones for years, unbeknownst to me, and was treated for everything EXCEPT this until I had an attack of biliary colic and things never got better, until, eventually, I gave in and had my gallbladder removed. Gallstones cause a LOT of digestive upset, particularly reflux, indigestion and wind/colic. So you should ask to be tested for that. It's a simple ultrasound, usually done at a clinic.

7. Lastly, a very old and wonderful 'cure', babies' Gripe Water. It has to be actual Gripe Water. You'll find it in the baby aisle. Don't buy anything marked for babies' colic (it's usually just simethicone, the same as the tablets above). Gripe Water comes in a glass bottle in a blue cardboard box and looks very old-fashioned, because it is. But there's a reason for it being a very old remedy, it works. When I had my very bad gallstone disease I had colic every day and Gripe Water saved me. It also tastes nice (aniseedy) and is very soothing. Just take the top baby's dose as detailed on the box (I think it's 10 or 15 ml).

Hope something in that lots helps you. Let me know if you need any more info on any of them. Good luck!

[ineedhelp786 in reply to Chancery]

Thank you so much for your reply. It is appreciated. I have been tested for coeliac both In a blood test and a biopsy and the test was negative as was it for h pylori. What irks me is that up until a year ago I was absolutely fine and suddenly these symptoms developed literally over night. I will look in to the other suggestions you made and keep me in your prayers

[Chancery in reply to ineedhelp786]

I don't pray, but I will definitely root for your recovery! And I'll just say again that out of all the suggestions I made, you are a very good match for Gastroparesis. It almost reads like a blow by blow description of your illness, and it is really unusual to have such a good fit with illnesses, so if you don't check out anything else at least check out that one! Very best of luck. X

[Chancery]

Sorry, just me again, I forgot one thing - you say you feel like your lower stomach isn't working. Perhaps it isn't, and you have a condition known as Gastroparesis, which is literally, that the gut doesn't work properly. Everything moves very slowly. What you describe sounds very similar. Here's a link to it on the NHS but you'll find plenty of other info on it if you Google it. I believe they can test gut transit time, so it is something that's diagnosable and treatable. Once again, good luck!

nhs.uk/conditions/gastropar...

[Nuttycatlady]

Could you ask your consultant to refer you to a dietician ? They might be able to help