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Undiagnosed and need opinoins

Hello my name is abbie. I am 17 years old and I can start off with saying the past year of my life has not been so well. I guess I can start from the beginning.I had my appendix removed in 5th grade. I have NEVER been able to burp, ever. I've always had this weird croaking sound in my chest and I sound like a frog. It didn't hurt when I was little but it began hurting my freshman year in high school. I also began to lose weight for no reason. I weighed 150 pounds my 8th grade year. I then started to have heartburn and chest pain. My stomach always hurt, if I did or didn't eat. I've always had explosive diarrhea. Started out a few times a day and now its up to 10 or more times a day. My stomach is always bloated and swollen. I am always nauseous and very tired. I went to the doctor and had a PH level study done and my acid levels were dangerously high so it was decided I was to have Laparoscopic Nissen Fundoplication surgery for GERD.I had a hernia and my esophagus was eroded at the bottom. this was when I was 16. A week after surgery I was admitted for pancratitis for 3 weeks. Could not find the cause of pancreatitis. Continued to have pain and stomach pain continued to get worse. I then had my gall bladder removed in March and part of my bowel. It was covered in adhesions and inflamed. I have continued to have pain and have been admitted to the hospital numerous times. My diarrhea is constant. I recently had blood in my stool. I was in the hospital 3 weeks ago again and had a endoscopy done. They found that part of my stomach wall were burned away from the acid and it was covered in ulcers and so was my small intestine. Doctors started to believe I had crohns or ulcerative colitis. I have had multiple MRI's and Catscans and they show nothing. I have had high white blood cell counts before but not now and all my blood tests the GI doctor did came back normal. I am POSITIVE this is not just IBS.I have a colonoscopy on Monday. I have been fighting this for so long I WANT them to find crohns or something just so I can know whats wrong. I have lost 40 pounds for no reason. My question is, Is it still possible to have crohns or colitis with positive blood tests? my inflammation levels for my appendix also came back negative when I was young. but were about to burst when they took them out. HELP ME PLEASE
 
Welcome to the forum, I am so sorry to hear of all you have gone through.

I'm not sure which blood tests you might be referring to, whether you are talking about CBC, inflammatory markers(CRP,ESR) or that you had Prometheus testing. My son's blood work, never truly shows his illness, his WBC count isn't raised nor are his inflammatory markers indicative of his illness. There are other members here that can't rely on blood work as any indication of active disease as well. The Prometheus Test isn't 100% accurate either and is not yet used as an exclusive diagnostic tool for IBD.

Hopefully your upcoming colonoscopy will give more pieces to your puzzle. Did they biopsy the part of the bowel that was inflamed and removed? Or did they say it was inflamed due to a gallbladder issue? During the endoscopy did they take biopsies of the ulcers?

I do hope you get some answers soon and find some relief from all you have been through.
 
they just said it was diseased from the gall bladder. and they did take biopsies from the ulcers but I have not heard yet what the results were. And I was just talking about a CBC and inflammatory markers nothing else. thank you for replying!
 
I wouldn't think it was IBS, either. IBS doesn't allow for blood in your stool or would it cause ulcers. Are the doctors trying to say that it is IBS?

What did they owe the acid erosion and stomach ulcers too? I know that you can have gastritis with CD along with other things like H.pylori as well. Did they prescribe you something for the stomach ulcers?

I really hope that you get some answers and relief soon and please keep us updated. Sending hugs and support your way!!
 
they just said I had so much stomach acid backed up it caused the erosion and hernia. They gave me protonix and Carafate for my ulcers. I also have an anti spastic medicine for IBS. My GI doesn't think its IBS But my blood tests were normal so that confused him. He just gave me that medicine to see if it would maybe help while i waited for my colonoscopy. So I guess it's just a waiting game until Monday to see. I know that taking too much ibuprofen or medicine like that can cause ulcers but I barely ever take that stuff. When I hurt I don't really rely on medicine I suck it up until the pain is gone I don't want to have to rely on medicine my whole life but as the looks of it I might. Or like you said the H. Pylori bacteria can cause them but I never got the biopsy results back. Thanks for your comments, I truly believe its not IBS. I know people who say they have severe IBS and it is not like this. This pain is constantly ruling my life and I'm so ready for It to be over!
 
Abbie,
I am sending you tons of hugs and prayers. I'm so sorry you are dealing with all this. I agree that biopsies would be best. It's good that you have a colonoscopy scheduled that will hopefully be very valuable. It amazes me that all these blood tests can be normal when things clearly are not. I had blood tests all normal this week but still inflammatory symptoms. Bless your heart. I completely sympathize. Diarrhea is horrible. People think no biggie it's just diarrhea but when you feel like a slave to the toilet it hurts. I have felt the same with colitis. Don't despair. There are educated doctors out there. We fortunately live in the USA with decent medicine, superb surgeons, and physicians who've seen a lot. I have faith you will get answers and relief. God bless you! Write me a message anytime. I have 2 little kids and IBD. I understand the difficulties of GI ailments. All my best to you for quick relief!
 
We moved my son from the GI that diagnosed him(adult GI) to a peds GI since he was 15 at the time. I request all lab results and test results and keep them in a file. There are some members on here that use excel sheets and other programs to track their lab results. Make sure you get copies of everything. I keep my file at home but I also have a copy that will travel with my son since he is now 17 and will soon be heading off to college, travel, whatever else it is that teens do!!Ha.
 
Thank you so much for your prayers and opinions! I haven't been on in a while. My colonoscopy showed Crohn's disease and I am now starting steroid treatments. I went to the er 2 days ago pain was so unbearable.
 
If you are eating any grains, you should stop. It will help - I'm not saying it will solve all your problems, but it will definitely make you feel better.
 
Check into either a low-FOD diet, or a low residue diet. Either one is likely to help you get your symptoms under control and help you move out of the flare. It's good to hear you have a diagnosis, at least you are on the right meds to help you feel better, although it does seem to take a long time to get there.
 

DJW

Forum Monitor
Hi AbbieN. Im sending you my support and best wishes. Hope you feel better soon.
 
Thanks for opinions everybody! Since being diagnosed with Crohn's I have been on entocort and Prednisone. I have been to the E.R. three times in the past month. My GI doctor is an adult GI doctor and i am only 17 years old so I am technically underage and he feels uncomfortable starting me on humira or remicade because he usually doesn't treat younger Crohn's patients. I continue to lose weight. He wants me to get a second opinion down at Barnes Jewish hospital in St.Louis from a specialist who specializes just on Crohn's to see if the third-layer of the triangle treatments are right for me. I have had so many problems in the past year that dont really connect to Crohn's I believe he is just confused. I am so tired of fighting this and I just want to make it through my senior year of high school. I sort of get this feeling like he has given up on me and is just passing me along to somebody else....and I don't really understand why he wont put me on humira or remicade... I understand the whole underage thing but it also gives me the idea that he thinks my crohn's isn't bad enough to be on those medications. He said himself my small intestine looked like chewed up dog food. So why is he so reluctant? I am just very confused!
 
It is probably for the reason you stated. He is an adult GI not a peds GI and some are uncomfortable treating someone under 18. My sons ped GI as well as other ped GIs see their patient past the age of 18 some until 21 others up until 24. Finding another GI be it adult or Peds may be the new set of fresh eyes you need to get you the best treatment for the severity of your CD.

My son is on both Remicade and methotrexate. He is on the adult dose of Remicade at a shortened schedule. This with the addition of methotrexate has brought him to a good place, maybe not deep, stable remission yet but he isn't having symptoms.

I wish you the best in finding not only a doctor you are comfortable with but also one that is comfortable with treating you.
 
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