Any advice would be great.

[mikeyr01]

Hi all,

I came across this site whilst doing some research on a problem with my stomach which has been troubling me for a while.

About 18 months ago out of the blue I started getting a stomach ache. I just thought this was an upset stomach but when I tried to go to the toilet, nothing happened. They are all around and below my belly button and feel like I need to go to the toilet alot of the time. They seem to be abit worse in the morning like whatever is happening settles on my stomach while im asleep then all starts when I wake up. I am also burping alot and have alot more "wind". My appetite comes and goes and at the beginning i lost around 9 lbs in weight but this is now back to normal. I also often feel the need to burp and like I have trapped wind. If i push around my belly button, It feels painful all around it. I dread eating as it feels like any food affects it but no food in particular.


Up until the stomach pains started I was taking antibiotics for acne for around a year and also diclofenac for pain in my back. I have stopped these as soon as my stomach pains started but feel they may be linked.

I have had a gastroscopy which they just found inflamation which they said is not enough to cause my problems. I have also tested negative for celiac disease. They said I have a slightly overractive thyroid but not high enough to warrant action. A colonoscopy was also clear.

Obviously IBS has been mentioned by the doctors but I feel this is such a cop out. They said this to me around 2 years ago which actually turned out to be H PYLORI. I wonder if this has had an affect on the way my stomach works. I was tested for that this time and that was negative. This feels similar but more low down and I am not getting the acid reflux.


Since then I have tried elimination diets and at the moment trying probiotics and other supplements as I was told the antibiotics may have caused this. but after 3 days they made me feel awful. I stopped them 5 days ago but now feel worse.

I am so unhappy by all of this and it is having a massive affect on my life.any help/advice will be great, im sorry if this is not the right place to post. Also sorry if this is confusing.

Thanks

Mike

 

[StarGirrrrl]

Hi there, sorry you are having troubles. You're right, IBS is a cop-out diagnosis.

One thing that stirkes me is that you've had no tests on your small bowel- no CT scan, Barium Follow Through or Pill Cam (although it's rather a postcode lottery as to whether you can get that or not in the UK). Had any blood tests done?

Both scopes only see a tiny fraction of your small bowel so in my view not enough has been done to justify a diagnosis of IBS. Needing to get up in the night to use the toilet is NOT part of IBS. Even my Gastro, who is hell bent on an IBS dx (long story), openly admits that part does not fit with IBS.

I'd ask your GP for a referral to a Gastro Dr.

Also it may be worth asking for your thyroid to be tested again, it might have gotten worse in the meantime.

 

[mikeyr01]

Thanks for the reply.

I have had blood tests done but couldnt tell you what for. these were all clear.

I dont know whether to stick with seeing a nutritionist to see if its food related or back to my gp. i think they will just dismiss me with ibs tablets though as tey have done already.

 

[D Bergy]

If it is H-Pylori, which I had in my Stomach at one time, you could try Manuka Honey from Australia. It is supposed to kill H-Pylori.

It sounds like the pain is coming from the general area of the Ilium. My symptoms until just recently were similar to yours. At least the more pain in the morning part. I think this is because everything you ate the day before, is now passing through the Ilium area. Since it is flared up, the friction irritates it more, until it has passed through.

My infection turned out to be Mycoplasma Pneumonia, but that was an unusual pathogen to have in that area. It may be worth testing for, if they have no other suspect. If you have had a bout of regular Pneumonia recently I would suspect it more.

I also had patches of inflammation, but no scarring, or other abnormalities. They were stumped as to the cause, and I only figured it out when my lungs were infected again with Pneumonia. Zithromax took care of most of the infection, and 80% of the other symptoms.

I am still somewhat flared, but that is likely another pathogen that I am treating myself.

Good Luck

Dan

 

[DustyKat]

Get the blood results Mike, they would have done the basics but see if they have also done inflammatory markers, CRP & ESR.

StarGirrrrl is right, there is a huge amount of bowel that as yet has not visualised and as hard and frustrating as it is you need to keep pushing for answers. Do you keep a diary of your symptoms? If not have a look at this for ideas...

http://www.crohnsforum.com/wiki/Diary-Inclusions

Keeping an accurate log of your symptoms makes it harder for the medical profession to refute.

Good luck and keep us posted!

Dusty. xxx

 

[mikeyr01]

I do keep a diary, pretty much reads the same every day.

"wake up with low pains and excessive "gas"

"loud stomach gurgling noises"

"stomach feels very unsettled"

" gas straight after eating"

Theres doesnt seem to be any pattern where certain foods are concerned, it seems like when i eat, my stomach doesnt like it. This is why im not sure whether to carry on with the nutritionist or go back to my doctor.

xx

 

[DustyKat]

Good, well keep on with the diary and be very specific. Describe the pains, your bowel motions, any other symptoms and so on. The wiki diary explains it well.

You can still see the nutritionist but go back to the doctor as well.

Dusty. xxx

 

[L_J]

your pains sound exactly the same as my partners, especially the loud stomach gurgling noises and excessive burping. Like you he also had trouble with his GP and was sent away with Senekot and Buscopan for IBS.
We both felt this was a cop out and so demanded to be referred to the gastro doctor at the local hospital. This took us a good 6 months and a whole load of damage had been done in the meantime. He is now having emergency surgery on Tuesday after a 4th admission to A&E.
It's your body, you have the right to demand proper treatment.

 

[mikeyr01]

has he had things like colonoscopy done? do they have any idea what is is other than ibs? hopefully they find something and can help him out x

 

[Trysha]

Hi Mikey,
The advice to insist on seeing a gastroenterologist (GI) is a good one.
You should have qualified advice by a specialist, a GP is not trained to look after GIpatients.
Diclofenic has been implicated in causing inflammatory symptoms,as have others such as ibuprofen and aspirin.
You need specialists to examine the small bowel and you should also have inflammatory markers such as blood levels of CRP and ESR. this is C reactive protein and Erythrocyte sedimentation rate.A GI specialist is likely to order these and other investigations.
You are entitled to a specialist opinion and you should insist on it.
IBD requires early intervention and it is you whole life you are looking at.
Hopefully you love near a hosptal system which has GI specialists.
St Marks hospital in London is one of the best for GI issues.
Trysha

 

[mikeyr01]

Thank you, i think i will go back to my GP.

Lastnight i didnt have dinner and woke up this morning with alot leas pain and hardly any when i felt around my belly button. This makes me think it is food related, maybe something to do with digestion.

 

[cosmic dave]

Hi mike, im no doc but have had crohns for 25 years and it does not sound like it to me, i dont know if that has helped or not, with crohns people loose stones and are laid up in bed with pain, believe me ive been sick with pain and had to run around the bedroom to try and take my mind off it. are you bleeding when you got to the toilet ? does one mouthful of food make you feel like your gona collapse ? this sort of thing happens mate, I do hope they get it sorted tho as feeling rough is as we all know not nice.
Best of luck with things and keep us posted.

Cheers

David

 

[ormsklad]

Mike I can agree with Dave here the amount of pain I was in over the weekend I had to go into hospital. All I can advise is ask your GP to refer you to a dietian the NHS is moving on to FODMAP and for my friend with IBS has worked very well. I wish you all the best in getting sorted out.

 

[StarGirrrrl]

I'd disagree with dave, CD often presents with different symptom sets, some with none at all, some lose weight, some remain overweight etc. The pain varies and so do tummy symptoms.

You will find several members here who got told by Drs they couldn't possibly have CD because they didn't lose weight/were over, well they got dx with CD all the same because that's what they had!

Before thinking of an IBS diet I would pursue a Gastro referral and more tests.

I also find trust your instincts- you know when something more is wrong than what the Drs are telling you. I wish I had insisted on more tests 5 years ago, I sure am paying for it now I have gotten so bad.

 

[cosmic dave]

Like I said Im no doc, lol

 

[StarGirrrrl]

Like I said Im no doc, lol

Me either lol, is always good to get different viewpoints

 

[mikeyr01]

abit of an update...

since friday I have had diarrhea each day, losing roughly a pound in weight a day due to not eating so feeling very tired and weak.

I went to the doctor today and he has arranged for a thyroid blood test, another stool test and given me tablets for IBS as he feels that what it is. H e has also sent off for my biopsy results from colonoscopy and gastroscopy as I never actually got these.

When all these results are back, he said he will then refer me to a specialist.
I think I am resigned to it being IBS so i guess I will also get help with diet and that to try and control it.

At the moment all I am feeling is I really don't know how people cope with having this for life, I cant imagine working with it, it stops me doing anything out of the house.

Thanks everyone x