Posted , 8 users are following.
So about 10 months ago I started randomly getting really nauseous and throwing up in the mornings, it was mostly stomache acid and happened 4/7 days of the week. I was working at the time and attending a community college so it didn't really bother me much then and I had a busy schedule so I put off going to the doctor. So about 3 months after that ( 7 months ago from now) I was woke up by the WORST stomache pain I've ever had in my life. It was at the top of my stomache almost where my rib line was. I had never in my life had pain like that. And then came the vomiting. It was none stop. Every 3 to 4 minutes I was puking up pure stomache acid and a lot of it. No matter how much I threw up, more came. So I did that for about 4 hours and decided I couldn't take it and had my mom take me to the Emergency Room (I have never been to an ER before so for me to ask to go was a lot). Got there and go back to a room. My blood pressure was very high (I've always had a near perfect blood pressure). They gave me an IV and a small dose of Tramodol. It literally didn't nothing. They brought me morphine and it didn't even help. They eventually gave me a dose of dilaudid and it barely took my pain away. I had a CT scan done and blood work and it all came back very normal. So they released me and said they couldn't do anything else. To go see my primary care doctor. (I'm a 20 year old female and still go to a peditatian I have seen my whole life so they aren't much help at all) after being in the episode for 18 hours it all finally let up and i started to recover. I have an episode like that about every 3-4 days after that. I've seen Gastro doctors. 3 of them. And they all say I'm completely healthy. But my blood pressure stays alittle elevated now. I've had an upper scope done with biopsies that came back very healthy. They won't do anything else now. From the start of this all I have lost at least 50 lbs. I used to weigh around 175lbs and now I can't get above 120lbs. I'm at my breaking point to be honest. I go to the ER's and they do nothing now. Don't even give me fluid hardly. I honestly have no one taking me serious. My pediterian atleast tries to help me. She researched some things and all we've found is give me Lorazepam 1mg at the start of an episode can deal it alittle but nothing helps. Nothing can prevent it. I lay and cry for up to a day in pain and there is nothing I can do. I have absolutely no appetite. Even when I'm not in an episode. I can barely force myself to eat once a day. Sometimes I go days without eating because I physically can't. It's affecting my family to see me that way all the time. I barely can do anything. I had to unenroll from school and quit my job. My whole life is on hold from this sickness and it is getting to me. I've tried taking it upon myself to research things, but when I bring them up to doctors I basically get laughed at. Changing my diet has no affect on it at all. Some food are okay one day and then the next kill me. I feel like I'm slowly wasting away and the doctors don't care. So please if you have any suggestion, I'm completely open to them!
1 like, 18 replies
I have, I had a HIDA scan and ultrasound it all came back fine. That's what I thought it waa at first
I have been constipated a lot, but I've been using miralax for it which my GI recommended. Amen bowel movements make no difference in the pain. Vomiting makes it worse a lot, my body almost tenses up completely while it does it and I shake too sometimes. But I have sharp pains all across my abdomen while it happens, but the worst pain doesn't move. It stays at the top of my belly and is tensed. It's like I can feel my aorta beating there a lot too. Or that's what my doctor said it was. And I mostly eat fruits and drink water right now. I can't stomache a lot more than that.
Have you been on any strong medication such as antibiotics that might have disturbed your gut?
It does help when I have to use it, but the constipation isn't an always thing. Most of the time It happens a day or two after I have an attack from me being extremely dehydrated. It doesn't do anything for pain though. And I've thought about stress, but I'm way more stressed now that it's gotten so bad than I ever was before this. I had to stop being scared of having one because worrying and waiting made them worse when it did happen.
You should change your doctor to get a different opinion on your symptoms because you are losing a great deal of weight. In the meantime, you could try meal replacement drinks to build yourself up. If you can’t manage those, you may need a drip to give you nourishment.
They won't give me either of those. They said my problem is an upper GI issue and those tests would be "pointless". I have switched my Gastro doctor three times to get different opinions. The first two said I was healthy and basically making it all up. And the third said he knows there clearly is something going on, but don't wanna figure out what it is. He just wants to treat it. I have been on about 15 different medication in 4 months. Nothings works. And I have tried the nutrition drinks, and if I can hold them down they are fine, but I almost can't hold anything down. I asked to go to the hospital to get some kind of nutrition because I was so weak and they said they couldn't. I'm just not taken serious no matter where I go.
I forgot to mention that I have ketones in my urine every time it's checked from not being able to eat and drink. I was told my body was "going into starvation mode" but yet there was nothing I could do about it. It doesn't seem to be a concern for them but I just feel like it can't be healthy to stay like that.
It is really appalling that the medics are taking your case so casually. Losing weight at the rate you are losing it is a serious matter. Have you been checked for pacreatitis. You need to have your Amylase and Lipase levels checked. These enzymes are linked to your pancreas and and show abnormality if you have pacreatitis which causes immense pain and vomitting. Although you have had ultrasounds to look at your gallbladder your pancreas will not show as it view is blocked because it sits behind your stomach. Go back to your doc and ask for an Amylase/Lipase blood tests...
That's what I'm saying! They don't think it's a big deal at all. But I was always on the heavier side, so they don't see my weight loss as bad. They literally think it's good and better for me. But I keep losing. I have been checked for pancreatitis and gastritis and didn't have either. But during my ultrasound they found Fatty deposits on my liver, but said it was nothing to worry about. I have found a couple things I wanted to be tested for but they refuse. Like literally say they are the doctor and I'm not and I need to stop googling things. But what am I supposed to do? They won't help so I have to take it upon myself to try and help. Doctors think I can keep this up and that I'm doing fine, but I'm not. Every time an episode starts it feels like that's finally gonna be it. My body is finally gonna give out. But somehow I pull through.
It's all very well for the medics to say it's good you have lost weight.....it is if you've lost it intentionally by way of a diet, but you are losing weight unintentionally and through something adverse going on within your body. This should give them great concern!...you have to keep going back to your doctor until they do something for you...
Sounds like what I went through 4 times, tons of tests, blood tests, ultrasounds, endoscopy, cat scan, colonoscopy, many other tests, lost lots of weight. Doctors said must be IBS since they couldn't figure it out. After 1 incident as soon as I felt better, same day, I passed a large round white sinking thing (now I think must have been large gallstone not seen on any tests for some reason). Wished I had taken it in but just stopped going to doctors since I was finally feeling better. Have been taking prilosec everyday along with clonazepam for anxiety which of course got much worse everytime I went through this. Have been well for over 6 years so far. Also take probiotics, digestive enzymes and many vitamins and minerals.
It's like clock work though, every 3-4 days I wake up to pain and it all starts again. I've went two weeks without one once and thought it was over. I had gained 7-8 pounds and was doing so much better. But when it happened it was worse than before. I lost all the weight I had gained. And even more. Prilosec or Zantac do nothing for me, don't help or hurt. That's one thing the doctors don't believe. They keep saying it will help, but it doesn't. I suffer from anxiety very bad and literally having episodes makes it so much worse. My whole body goes into panic mode and I shake uncontrollably.
Some questions and ideas:
Has an MRA or CTA been done?
Not "just" an CT for organ, obstruction looking, for vascular system in that area (as I have a MALS and SMAS/nutcracker daughter and this being overlooked highly for her nausea and vomiting and weight loss).
Has abdominal migraine been suggested and medication been trailed? (use of medication is diagnostic, if it helped or not)
Has hereditary angioedema in abdomen been considered? (C1-esterase inhibitor test in blood, cheap)
Has porphyria testing been commenced during worst pain attack (in urine, stool and blood; very quick removal of light and quick sending, otherwise useless test)
Has FMF (if symptoms fitted, do you have fever with it?) been considered and/or ruled out? (quite expensive genetic testing)
I definitely haven't had either of those done. They won't search for anything that isn't like physical. My pediatian actually thought I could have abdominal migraines so she put me on the medicine to treat it and it didn't even help alittle so we ruled that one out. As far as the porphyria, I read a lot about it and thought that could almost definitely be it. But literally no one will test me. I know it has to be durning the attack, but no ER will ever test me for it. I asked my Gastro about it and he basically laughed in my face and said he's not even checking me because that's extremely rare and he knows I don't have it. But I will definitely look more at all of these! Thank you so much because atleast it's a start to try and find something. I need to now find a doctor to take my case serious
Oh it is so frustrating, money and energy draining, when you get brushed off and you know it is not "psychological".
We needed TWO years ...
before my daughter got diagnosed (with MALS, SMAS, nutcracker, pelvic congestion) and you won't believe which (zensor) b******t of explanations we had to listen to by so called professionals AND pay a high ordination fees for this nonsense ignorance stuff.
(ranging from "it's a difficult time being a teenager", to "sometimes pain just is wrongly staying around like phantom pain, from "you make your child sick by going to doctors and having investigations done" to "you mother, you wanted maybe more children and cause your child to be sick in order to stay needed." ????woah.)
We had a MALS doppler ultrasound done locally and I knew it was in wrong position (technician had her sit up a bit as my daughter get's more nauseated supine) and still elevated values even being so symptomatic (vomiting upon reclyining) were hence dismissed. ? I argued with GI doc, he didn't want to hear about 'mistakes or misinterpretation'.
Getting the same doppler ultrasound for coeliac artery velocities again in correct supine position made MALS very very obvious. Duh,
But you see, I had to go a second time, search for docs and facilities online, who were familiar with this diagnosis AND pay fully privately (so didn't need a referral).
It drains us down to the core financially just because of being disbelieved and hence delayed in diagnosis. My parents have to help us pay, too. We can't afford this sickness anymore.
So I can very much understand you
and can only encourage you, to not give up.
We had weeks where we just gave up, but then some energy came again to keep on fighting and pushing and see someone else. We were accused of "doc hopping" and it was the only way getting diagnosed! So don't get intimitated by that almost accusation of "doc hopping".
A doppler ultrasound e.g. for MALS is non invasive, shouldn't be too expensive either. You need to get your GI doc or GP to refer you to a doppler ultrasound or call a facility if you can have it done and how to get there. If they could look at duodenum (SMAS) at same time (which is possible during drinking and eating something), would be a benefit.
Please hop onto other online groups specifically designed for those illnesses and ask questions there or search their files to know where to go to.
Even if you don't have MALS or SMAS, it is a relief to have that exclusion.
As to porphyria, we encountered the same.
I knew the one off eye rolling sent off urine sample was worthless as it is only processed once a month in one facility in the whole state and was transported from collection center to main center and from there to processing center. Also they did a screening test and I did this testing myself. It only picks up levels above 3fold pathological values and the best screening test is now discontinued, so usually each porphyria submolecule is quantitatively tested. But not in that center our urine was sent to. When I dared to ask "which screening test", I got no answer. If it was a bland Ehrlichs test, it is too little. Useless. Also if not without light and frozen for sure, it is down. Also it needs stool and blood together in one go. The genetic testing (that would be the best) is unfortunately horrendously expensive.
What you can do as a little some porphyria testing yourself is,
collecting concentrated (morning) urine preferably after a bad night (sorry) putting it into an open clean glass jar and leaving it outside directly under the sun UV for 24 hours.
If you see a good colour change (make a pic, one forgets. We are talking reds and purples) under same light, it is porphyria.
I did that, it only got dark yellow, so I was kind of relieved even that is not gold standard and not including all forms. But at least not the bland obvious type.
All the best
and much strength.
We also trialed and errored a lot with smoothies, juices, apple and banana puree always stayed down when getting better. There were 2 weeks, where nothing held and she reeked of ketone smell, urine of course full of ketone and still was denied of TPN! I can't believe it. I do have though frozen electrolyte icy poles in the freezer to suck on slowly, give any preferred drink from tea to water to even coke or freshly pressed juice. On bad days you need to keep the liquid intake ok, check how often one can still pee and check skin for dehydration. Because I gave her things to keep electrolyte balance, no imbalance showed up in blood work and was denied intravenous fluids. It is so stupid, if one vomits and reeks of ketone, it is time to give a bottle of iv fluid/nutrition as it does help so much to improve symptoms.
Take best of care!
Wishing you the best!
Time for a new gastro!
Join this discussion or start a new one?New discussion Reply