Atrophic Gastritis??

[Sooz]

Hi All
I've already posted my story in the undiagnosed club but wondered if anyone else can offer any insight. I have been suffering with chronic Gastritis for 3 years, never had a problem with indigestion or anything before but suddenly one day it came and never went. The Dr gave me PPI's but although they helped for a couple of weeks they stopped working and then when I tried again, they actually made things worse. At the same time I was having problems with passing mucus and blood and awful pains in my bowel. This has gone on intermittently over the past 3 years. The Gastritis is so bad that sometimes I can't even eat and have lost weight that I cant afford to lose.

My GI is very good and understanding and has said that he thinks there is something going on but he's struggling to find out what. He gave me steroids as a test and they cleared up everything, the Gastritis went, my bowel behaved, they were brilliant for me but of course I can't stay on them.

Tests I've had so far are:

Colonsocopy & Gastroscopy 2011 - Severe Gastritis in the fundus, H-Pylori Negative. Reddened patches in the large bowel and rectum. Biopsies negative

PH Bravo Test 2012 - Negative, no reflux found

Capsule endoscopy 2012 - Normal

Colonoscopy & Gastroscopy 2013 - Mild Gastritis, Large bowel normal - Awaiting biopsy results.

I has a course of steroids 4 weeks prior to the last colonoscopy and gastroscopy which significantly healed my gastritis to the point that I couldn't even feel it. My bowel was really playing up immediately prior to the last colonoscopy so I was really hopeful something would be seen but he said everything appeared normal. He did take a lot of biopsies about 24 from my stomach and 24 from my bowel so am awaiting the results from that.

I'm just so fed up of living like this, I don't understand why I have Gastritis, he said the first time they found it, it was what he would expect to see in an alcoholic who smokes 60 a day. I don't drink, don't smoke only perhaps one every now and then, I only drink water as everything else burns my stomach, I eat bland foods only such as chicken, rice, crackers, potatoes, oatmeal. My GI has said he thinks the Gastritis is auto immune as I have been tested for H pylori twice (biopsy and breath test) and each time it came back negative.

He has offered to put me on Aziothripine as I can't keep taking the steroids and have pretty much become dependent on them but I feel that I want a proper diagnosis before taking these toxic drugs. I know you can get crohns in your stomach, could it be possible that it is in fact crohns and not just Gastritis, does anyone else experience this?

Thanks for reading x

 

[lizbeth]

Hello .

You sound like you're having a miserable time, I'm so sorry this is happening to you. It's good that you have a supportive GI who appears to be working with you. I'm afraid I really can't offer much other than my support and prayers. Initially when I approached a Dr about my problem (last Nov) I was diagnosed with gastritis too and put on ppis, I did end up in casualty next day and went through the usual testing to be told I had crohns, however the pain just under my ribs was still bad and I was put back on the ppis, for the most part they have helped. It was that pain that took me to hospital in the first place.

It seems to be long, slow process trying to find out what's going on, but hang in there, you will get there. Don't rule out azathioprine, I know it's a frightening thought but many people respond well to it and you might too, I'm facing the same decision as you so I can appreciate your apprehension.

I'm sorry if this hasn't been much help but I'm sure there will be others along soon that can help, just wanted to wish you luck. Please let us know how you get on.

 

[Sooz]

Hi Lynda

Thanks for your reply, it's so nice to be able to talk to peple who have an understanding of what it's like to deal with these problems. My family, friends and boyfriend are all very kind but they just don't understand. I also start to feel like if I keep mentioning I'm in pain that they're getting bored of hearing it. On a recent day out my boyfriend has actually said 'well lets not talk about it'. I was like 'ok, I won't mention a thing if it makes you feel better, but when I can't eat lunch, dont bother asking me why, or if I leave you waiting for an hour whilst I'm in the bathroom, again just ignore it ok'. I got really cross actually because I really don't moan about it all the time despite the fact I'm in pain all the time. You just don't get a break from it, it's every minute of every day and then when you do get a respite you're almost euphoric but also waiting for it to return. People seem to think you should be able to just take your mind off it but it's like toothache, it's constant!!

I did try the PPI's I started on Lansoprezole then that stopped working after a month so they gave me Nexium, which worked for 6 days, I then tried ranitidine that didn't work at all. When 6 months later I tried them again they actually made it even worse. I started to think maybe the problem is I'm not producing enough acid as everytime i ate it felt like it was just sitting in my stomach, I could eat half a sandwich and 6 hours later still feel full and like I'd eaten a 6 course meal! The GI said if your stomach is inflamed you wont be producing acid like you should be so that is probably why.

When it occurs it feels like someone has poured burning lava into my stomach, i never get reflux or acid come up the pain is always between the ribs just above my navel and sometimes it feels like somebody has put their hand in my stomach and is trying to rip it out, my stomach aslo goes rock hard in that area as if it's swollen.

The bowel problems are equally as bad, the worst part is the pain but I get loose stools, sometimes mild constipation but I always have mucus in them. I've tried cutting things out my diet but its got to the point where I'm living on about 6 different foods just to be able to function and go to work.

I just wondered if anyone on this site has stomach crohns and if any of this sounds familiar?

 

[lizbeth]

Hello again . I understand what you mean about the family and boyfriend and theme not wanting to talk about it, I have wondered if others have felt the same away cos I certainly do, initially I got annoyed about it, but 9 months on I think my lot don't know what to say to me and want to make me better but can't, I now believe it's frustration on their part that they can't make it go away so don't want to talk about, bit like burying their head in the sand? My older sister hasn't even spoken to me since Dec!! Her loss. I know it's upsetting when you need to sable to talk to them but at least know that you now have many new friends who will do their best to help .

Your description of burning lava was very apt, it perfectly described the pain I felt (and still do) I never had heartburn or reflux either it just hit me exactly like you described and I bloated very badly so much so that I would look like I was 7 months pregnant! When I'm like that I use heat pads and that really seems to help ease the pain. Or a hot bath. I'm so sorry you have had no success with the ppis, has your GI suggested anything other than the azathioprine to help? When do you expect to get the biopsy results back?

Talking about food, have you been seen by a dietician if not I would suggest requesting a referral, in the meantime, have a look at the info on here about low residue diet, you seem to have a very limited amount of foods you can eat so this might widen your selection a little. I found it helped my symptoms too. Basically, avoid spicy foods, caffeine, corn and corn products, nuts and whole grains, foods with skins on and cut down on the fibre you eat so switch to white bread and pasta etc, I know I have left things out out but the full info is on the forum wiki.
It's also with keeping a food diary and recording your symptoms, seems like a lot of work but before too long you will see what doesn't work for you.

Keep your chin up, it's slow but you will get to a better place, take care.

 

[Sooz]

Yes I have seen a dietician but she said I've excluded everything from my diet that she would suggest and much more. She wanted me to try and introduce more fibre into my diet but I said to her some days I'm lucky to eat anything let alone what I consider 'unsafe'. She doesn't really know what to do with me I was referred to her with 'IBS' but she said my symptoms are not that of IBS, she's given me a load of high calorie drinks for when I can't eat and kept me on her books but she's pretty much said until they can stabilise things for me she doesn't know what to suggest. It's just a vicious circle

 

[Thunderstorm]

Holy moly, your symptoms are pretty much the same as mine! I haven't received a gastritis diagnosis as I've only just started seeing a GI doc, but my stomach burns, burns, burns all the sodding, frickin time. Lava flowing through is definitely a phrase that I use regularly. Omeprazole for over a year has been of little help, and Zantac didn't do a damn thing. My H.Pylori blood test was also negative.

I'm also on a really restricted, low residue bland diet because of it. I do find that stodgy, bready type food often sort of helps to 'soak up the acid' for a short while, although I do alternately also get that food sitting in the stomach feeling after certain foods. Does your acid go through to the back? Does it seem to travel down and worsen your bowel symptoms (which are also pretty much the same as mine(!)

P.S - Pretty sure we have the same name too! haha.

I don't know what to suggest unfortunately. You seem to be further ahead than me medically. Let's hope that your biopsies show something.

Probably a silly question - have you had your gallbladder checked out? And have you had a calprotectin test?

 

[723crossroads]

So sorry Sooz for what you are going through. If gastritis is stomachache all the time and acid reflux, that is me too. I had it for 6 months straight and they sent me for a colonoscopy in 2011 and found crohns in ileum and colon.
The latest tests showed nothing (catscan) although my stomachaches are every week for days and diarrhea almost always unless I take meds for it. Acid reflux too.
My gastro just sent me a script to get a Pillcam done. Maybe we will find out now where this is going on. Hopefully you will too.

 

[Sooz]

Thunderstorm - The PPI's did nothing for me, I found they just made it worse. When it was really bad I felt like the food was sitting in my stomach so long it started to rot, I used to taste this sort of vapour as if it was old rotting food, not acid but rotting food, it was disgusting and would last a couple of weeks at a time, then at some point when I'd be eating something it would get really strong then disappear! So so weird!
Funnily enough when my Gastritis is playing up my bowel tends to be better, well I say that but I tend to be more constipated but that is preferable to the alternative which I usually get when the Gastritis is being a bit kinder. Honestly its one end or the other, never do I get a break! I did a fecal calprotectin nearly 3 weeks ago but not had the results, I've called and emailed the IBD nurse but she's not replied to me and that was monday, its now friday! They've never checked my gallbladder as far as I'm aware unless through a blood test.

723 Crossroads - Yes pain all the time and constant burning but I don't get the reflux with it, my boyfriend gets acid reflux and sometimes it comes up and he has to spit it out, I get none of that just constant burning and a feeling of fullness as if I've eaten waaaaaay too much, but I havent. I've got it now, I had 4 cream crackers for lunch with a couple of chicken slices and my stomach is hugely bloated and just burning. It feels better when I'm eating but immediately after the pain gets even worse than it was before. To be honest it just sucks!! I've had the pillcam test which showed nothing, I've had a small bowel MRI... again nothing. The only positive things they've found is Gastritis and my GI thought he found inflammation in my bowel but the biopsies came back negative. It's just so disheartening. I'm awaiting the biopsy results of the Colonoscopy and Gastroscopy I had last weekend but I really don't hold out much hope, whatever this thing is it doesnt seem to want to be caught!

 

[723crossroads]

A friend of mine has gastr peresis. Look that up! The food doesn't leave her stomach and she always feels full. She is diabetic. Have you had your sugar checked lately???

 

[lizbeth]

A friend of mine has gastr peresis. Look that up! The food doesn't leave her stomach and she always feels full. She is diabetic. Have you had your sugar checked lately???

My sister gets this, also diabetic, but it's due to medication to help her diabetes.

Sooz, no wonder you're tearing your hair out! Maybe your GI will request some other testing, if not already, maybe a small bowel serious or a pill cam? I remember feeling it was never going to end and waiting for something to happen. Apart from the steroids has your GI tried you on anything else, I take pentasa at the minute.

 

[my little penguin]

Did they look at the number of EOS?
Egid s
Can cause gastris if its EGE - pain bloating inflammation etc...
It's newer and steriods would fix it but if you are eating food triggers then it will flare.

Here is a link
You might want to have your old slides read for EOS count
http://apfed.org/drupal/drupal/symptoms_of_EGIDs

 

[Sooz]

Thanks for all the replies. I've had the Pillcam last year which came back showing nothing, he did say I had slightly delayed emptying but never said any more than that. I've had god knows how many blood tests so I assume they've checked me for diabetes.
When they did my gastroscopy weekend before last it did say in the notes that my oesophageal juncture was open when I suppose it should be closed but I don't seem to get reflux and there was no signs of irritation in my oesophagus, the inflammation always seems to be in my fundus and this time there was also a little in the antrum.
The Doctor has suggested putting me on Aziothripine as I've basically become steroid dependent, I'm fine when I'm on them but within 2 weeks of coming off them it starts returning, usually within about a month it gets to its horrific stage where I can't eat and then I end up either just suffering it and losing weight or going back on the steroids.