Just got out of the hospital: Not feeling any better

[LindaJoy]

Hi, everyone.

Over the weekend, my gastrointerologist put me in the hospital because I've been having severe burning pain in my guts (between my belly button and hair line) and a low-grade fever--had these about a week. My family doctor, before the weekend, said he thought I had Interstitial Cysitis and did a urine test. It showed clear--no infection, no blood. He hasn't contacted me since to see if I'm any better.

My gastro. did blood tests in the hospital. He found nothing but low potassium. I always run a low potassium with POTS. He put me on protonics for gastritis. Today, I feel just as bad as I did Saturday when he put me in the hospital. I'm still running a low-grade fever and the burning pain is back. In the hospital, I was on IV protonics and seemed to feel better. Of course, I was given a pain shot on Saturday, too, that sent my blood pressure dropping to 70/ 40 and my stomach felt like it was in a vice. I tell you, that was the worst pain I've ever had in my life, next to childbirth, but I think after the initial terrible stuff, the pain shot worked. Anyway, my gastro said since my urine was clear of blood, that it wasn't Interstitial Cystitis, and since my blood work showed no inflammation and my white cell count was normal, I didn't have anything seriously wrong with my digestive system. He said it was probably the flu or an attack of gastritis and irritable bowel and sent me home on oral protonics.

Any thoughts on this? I hate to question my gastro, but I just don't seem to be feeling any better at all. My guts still burn and hurt, I still have a low-grade fever, and I feel terrible.

Any thoughts would be greatly appreciated. Thank you.

LindaJoy

[Roselover]

Oh LindaJoy, I was so sad to log on and see you'd been in the hospital!

What about seeing your OB/GYN? Just trying to think what there is between the bellybutton and hairline Uterus, overies??? Low pain doesn't sound like gastritis but I could be wrong. Fever sounds suspicious too, though I know I often run a low grade fever for no reason.

Docs I see don't seem to think outside their own field so I try to do that - if protonix doesn't relieve it, keep looking. I'm sorry I don't have great advice, but I'm thinking of you and praying for you.

~Roselover

[kmpower]

Hi. I am sorry you are feeling so awful.

If you have pain, something is wrong. What laboratory indicators did the doctor use to say you had no inflammation? There are lots of inflammatory markers which aren't routinely tested -- hs-CRP, sed rate, more. Maybe the white count is normal and there is no infection, but there still must be something happening. You could have a bug of some kind and they perhaps should do a stool culture. It could be dysbiosis, leaky gut, lots of things.

Some of the good suggestions in the -- er, um -- flatulence thread might be helpful.

OLL

[morgan617]

I haven't heard of anyone who could diagnose the existance or lack thereof of IC, without LOOKING into the bladder. You see it on the bladder walls, and urine will not show infection and doesn't always show blood.

I would see another urologist. As far as the fever no idea. I do hope you feel better soon...morgan

[Jenn202]

Hi Linda - you do not nessesarily need to have a bacterial infection for it to be IC... Did they do a hydrodistention or a cystoscopy? B/c those are the 2 diagnostic tests for IC.... My OB/GYN sent me to a urologist for my persistent bladder, pelvic cramping.....

I would definetly try a urologist and see your OB/GYN

Pain means there is something wrong with your body..... So dont give up!

I hope you feel better soon

[DSM3KIDZ]

I agree with everyone that posted here. See a Urologist or Gyno. I'm need to take that advise also.

Sorry to hear you were in the hospital and still feeling bad. I will definitely keep you in my thoughts.... Hang in there and keep us updated.

Dayna

[bttrflyamby1981]

I'm sorry to hear your not doing well.

We live with our bodies every day, we no when something is wrong.

Go with what you feel. Good doctors will listen or at least try everything they can to find

out what's causing you to be in pain.

Good luck!

Amber

[Lulu]

I agree totally with the above posters, & would add part of my own experience:

i had horrible pain all over my abdomen last summer and weant through every test know and they never found the source of my pain. my doc bumped my protonix up to 2ce/day and i changed my diet. after awhile it helped. we just chalked it up to IBS and POTS related stuff. don't know why i have it to this day. but i take nexium now (kinda same thing as protonix) and watch my diet, so not too many troubles.

i missed that whole summer being in pain, had to take pain killers and be basically knocked out the whole time, couldn't eat and lived on ensures and gatorade. I hope you have better luck and are able to see a different doctor, especially since it sounds like your pain is more localized to the uterus/bladder area. go to a different uro or gyno or doc! Pain is not normal!! I really hope you feel better soon!!

Keep us posted!

Peace and light,

Lulu

[Be Still]

Bless your heart Linda, I?m sorry you're in pain.

My IC was dx?d by bladder biopsy and nothing else.

I hope you get to the bottom of this and get better soon!

[Jacquie802]

Hi LInda,

I hope by the time you read this you are feeling somewhat decent. I have been having stomach problems as well lately. Just alot of nausea and my GI doc also gave me Protonix and it hasn't done much. Just wanted to let u know I sympathize with you. Feel better!

Jacquie

[LindaJoy]

Hi, everyone again,

Thank you all for your words of support and your suggestions. I greatly appreciate them. Once I'm off the computer, I'm going to call my gyno and try to get him to see him. I've set up an appointment with my husband's urologist. I go in two weeks. My pain is not getting any better, and I'm on protonics twice a day, with a bland diet--even on a liquid diet for four days, I had pain.

During my blood work, the gastro. did check my crp, to check for inflammation. He did a very good work up, even checking for viruses, which was normal, as well.

I guess he's a doc that figures, if the tests show normal, you're normal. Go home and get over it. I've run into too many docs like that, that's for sure!

Again, thanks, and I'll let you all know what I find.

Hope you all are doing well.

Linda

[spapanik]

Lindajoy

From what I understand POTS patients have trouble with stomach aches and initially get diagnosed with Irritable bowel syndrome. The autonomic nervous system controls that also. What I have found that works wonders is a Calcium-Magnesium complex 1000mg-500mg. by Country Life. ( Any brand will do but this brand helps me It's from the health food store) Take one at every meal with Vit. C-complex 1000 mg. by Nature's Life. It has really helped my stomach aches and I even had them so bad that I had a colonoscopy and an endoscopy. Use a heating pad at night. Maybe right now you have the flu or something else but when its stomach pains try the above.

Stacie

[Guest Julia59]

I'm sorry your dealing with a belly ache---and feel so awful---low grade fever--ect.

There has been some strange bugs going around-----I hope it's that, and nothing longer term.

I know with ANS dysfunction our guts can get into a royal mess, and then stir up more of a mess with our POTS/dysautonomia------and then they keep feeding off each other.

Bev, from Dr. Grubb's office said I should see my PCP when she called me telling me about a high white blood count, as I was in their office a couple of days before with complaints of a belly ache, and hyper adrengic spells. She said I should go right away---the same day, or go to the ER if I couldn't get in to the PCP that day.

I ate some vegetable soup with a lot of corn, and it was hard to avoid because there was so much of it, so I just did the best I could.

I have a diverticuli in my small intestine near the jejunum area, and if I eat the wrong things----WATCH OUT! I gather that that got inflamed---and it passed----but BEV even consulted with Dr. Grubb, and he said go to ER, because I still had abdominal pain. I even said the pain was not nearly as bad---but still was told---go to ER.

This is something you should watch------since you have a low grade fever----something in the intestine should be considered also. Watch the fever-----and maybe a re-testing of your white count. It can go up and down.

My WBC was up to 16,000----but when I went to the ER it was only 10,000. The ER Doc kind of blew the whole thing off and said my spleen swelled during my hyper adrengic attack from the gagging I was doing----------------------

I hope you feel better-----

Julie :0)

[Richland acres]

Linda,

I am sorry i am late on this post. I do hope by the time you read this you are feeling better!!I am wondering about your gualbladder? My pain was not in the normal area when I had my gualbladder attack. I had no idea I was in pain where my gualbladder was until the doc. pushed on it, then I knew it hurt so bad. My pain was not near that area at all. I am wondering if you are experiencing any thing like that? Phantom pain in weird areas may not be where the real problem is. I hope your doctor checks your whole tummy area. Get well wishes are being sent your way!

Brenda