I don't know if my doctor knows what he's doing Because I do eat foods I'm allergic to which is most foods sadly, and because I eat too much I do know I need to change my diet, but I would have liked a little more help than just giving me an antacid. The pain and inflammation is in the colorectal area but the doc found lots of inflammation in stomach and esophagus (Barrett's esophagus). I hope I can help myself. I hope that you all get dx but with or without a diagnosis, we all need to help ourselves. Probiotics, the right diet, etc. Best wishes, Kelly
My best to you.
personally I don't eat anything after 6pm on my good days (bad days I don't eat at all just have my tube feed) and that's helped loads. Obviously everyone is different but that's what works for me. Definitely ask your GI for a referral to a dietician too, they will help you find some supplement drinks to help you get extra calories in. I know the US has different ones to the UK so I can't offer advice on specific brands to try but maybe someone else will be able to
MissLeopard sorry for the slow reply it's been a busy few days and a poorly few days.
Yes for some people they have gastroparesis and intestinal dysmotility together, they can do small bowel and colonic transit studies as well as the gastric emptying study but I think they have to be done separately if that makes sense? I always find that oats and other soluble fiber works better for my gastroparesis than insoluble fiber (shredded wheat/brown bread etc). Try having the fiber element of your diet earlier in the day, then something like a smoothie in the evening, the fruit will help the constipation but the liquid should help the morning bloating etc
I saw my GI yesterday and the plan is to keep going with the NG a few more weeks to build up a bit more then try the NJ again inpatient. She thinks the problems I had were a winning combination of reaction to sedation, gastroenteritis and the expected grumbles from a first time NJ placement. Just my luck huh?!
My bowels have been a bit dodgy again the last few days and I think part of it is because I got caught in the sun on Wednesday, does anyone else find too much sun upsets their bowels? Some of it was probably nerves about the appointment too but the sun exposure seemed to be a definite trigger.
So sorry. Maybe you need a second opinion
Agree
Sounds good, MissLeopard.
MissLeopard I'm so glad the new GI listened to you and has ordered the tests for you
One minute they tell me I have Crohn's then they say no we don't know what you have so basically the past two years I have ended up in the hospital for these flare ups. As of now all of my blood work is back to normal. I called a different medical system here in Wisconsin, it will typically take almost a month to get an appointment, but they pulled my records from the other hospital and said I had to be seen asap because I am being ignored. I have an appointment today with the new GI doctor. I am a bit alarmed as to how fast they wanted me to come in, however hopefully they will get to the bottom of this
I hope the best for you.
Good luck Tim xx
Welcome. I am sorry for all you have been through. I would keep fighting until I got some solid answers . Sending support.Hi, I'm new here...
I'm 24, new here, but not new to this.
I've been dealing with this since I was about 16 when my gall bladder started to kind of go awry. I had it taken out and that's when the pain started.
I feel like I'm dying from the inside out.
When the pain starts, it is a burning, sharp, I just ate glass, crippling, throw me to the ground, pain. It starts in my lower right part of my stomach, just under my belly button, and then seizes my entire stomach and radiates through my entire body.
I've had constant nausea, unintended weight loss, chronic fatigue, nocturnal BMs, small bouts of fecal incontinence, blood in my stools, blood in my vomit, constant abdominal pain, mucous in my stool, black stools, pain triggered by certain foods, feeling like I haven't fully relieved myself when using the bathroom, pain from not eating enough or too much, bloating.
My joints are often very very sore, but never swollen.
I've come down with pneumonia, bronchitis, upper respiratory infections, sinus infections, (oral)strep B, and oral thrush since December.
I have had a UA done which came back positive for white blood cells, but no Uti.
I have had 2 upper endoscopies, one colonoscopy, and three capsule endoscopies.
My first endoscopy and colonoscopy were done together in January 2017, and came back clear, aside from some mucous in my stomach.
On March 3rd, 2017, I had my 1st capsule endoscopy done, and the report showed "erythematous villi in the proximal jejunum. Visible vessel with petechia in midjejunum. Possible submucosal bulge in proximal ileum."
I was informed that this is inflammation, ulceration, and a possible abscess or tumor, but they weren't sure.
It took 7.5 hours for this capsule to evacuate my body.
Then somehow, when I asked them to go back over these images, no one seemed to know how to locate these files except the black and white images that are "too dark to see anything."
I was immediately sent back for blood work, where a lot of things have come back low end of normal, although from the looks of it my numbers are slowly heading in a negative direction and my WBC is consistently staying in the 9-12 range.
I was sent for a CTE which came back normal.
I was then sent for a patency test to ensure I could completely pass a capsule. The first patency pill got hung up in my bowel loops. And did not ever leave my system until it started to dissolve 30hrs after swallowing it.
They did a second, and that one passed after the 30 hour mark.
I was then sent for a second capsule study, which, after four and a half hours, had still not left my stomach and they had lost visualization after having a meal. This came back, obviously inconclusive.
It took 42 hours for this capsule to evacuate my body.
Two weeks later, on June 6th, I was sent back for a 3rd capsule study to be placed by EGD.
During my endoscopy, they discovered a 1-2cm Hiatal Hernia, mucous, bleeding and "mildly diffuse" ulceration was found in the "gastric body" and "gastric antrum". I was told this was just "gastritis" and the hernia was likely from all the vomiting I have been experiencing, but they hadn't caught any of this on the capsule study two weeks prior and they could not give me a valid reason why.
They placed the capsule in the the beginning portion of the small bowel, and then removed the EGD tube.
This capsule study came back "clear".
It took 49 hours for the capsule to evacuate my body.
Im now being brushed aside and told it's likely all just IBS and I have no idea what I'm supposed to do, and they're telling me that they have no more tests to run.
I've been dealing with this for seven, almost eight years, if I don't get to give up, then no one else should? How much longer do I have to beg to be heard?
Is this "JUST IBS?"
Is it really possible for all of these things to just manifest out of nowhere and then suddenly disappear?
I really need help.
I look forward to getting to know you.
Hope the best for you.
Yes.Good luck today with the gastric emptying study MissLeopard
Hope you get it soon.
Miss leopard
The ordering doctor and the radiology reading the GES
Have to go over the test results prior to a report being issued
once they discussed the results then the official report is issued
This is why they get 7-10 days to get together and talk
If you looked at the camera screen during the GES
It would should glowing pixels
With a clear stomach area in the beginning of the scan
You could watch the pixels slowly leave the stomach
Ds scan was done but we had to wait almost two weeks for the GI to decide what to do
That was almost two years ago and ees is amazing for letting him eat again
Some start with just diet
Many small low fat low fiber meals 6-8 per day
Ds only eats 200-300 calories at his big meals
But he supplements with formula since his liquid emptying is normal
Hope they have answers soon
