New to the forum and a bit nervous to share

Hi my name is Elena and I was diagnosed with chronhs disease in 2008. Shortly after that I had developed gall stones and underwent surgery to remove my gall bladder. The gastro doc gave me meds (pentasa/entocort) and it helped for a short time and the symptoms returned. Ten months ago after the birth of my second child the symptoms returned but it was far worse i began having a lot of abdominal pain, diarrhea, nausea, bloating, bloody stools, and vomiting. At my 6-week postnatal apt I lost 45-50 lbs. I couldn't keep anything in. The pain got so bad at times I would hunch over in the fetal position because I couldn't handle the pain. I continue to lose weight and have changed my diet substantially that I often hate to eat and that is huge for me because I come from a Hispanic family and I love to eat.

Along with that I have had to switch doctors bc of insurance reasons and this new one doesn't seem to think I have chronhs. Feeling very frustrated and angry bc I feel like I'm being dicked around. let's just say after several medications, colonoscopies, endoscopies, MRIs, ct scans, blood work, and now pill cam the doctor is no where close to knowing what I have. Not to mention I have to wait a whole month just to get my pill cam results bc they won't review it with me over the phone. All I got from the nurse was that I had two areas of severe inflammation and the doctor will go into detail about it!!!! Ugh I'm just so tired and literally starving bc I cannot eat hardly anything. I hope that this group can help bc I'm feeling pretty run down, defeated, and losing faith in the medical profession.

Welcome! You have nothing to be nervous about here. We all know what you're going through and have more than likely been through the same. Don't hesitate to ask any questions on here because there are a ton of people on here willing to help.

Welcome Elena!

Oh Elena--first of all--I'm so sorry that you are getting the run around---that is totally ridiculous. You may need to do what I call "throwing your ass a little bit." You just cannot wait a month. I'm not sure where you live--but I would call your Dr and demand all of your office notes. I would then go to the hospital where you had the MRI's and procedures and demand copies of the results. If you cannot refer yourself to a gastro Dr.---again call your current Dr. and demand that you get referred. You are much too sick to wait--especially being a mama trying to take care of your family. I was diagnosed with Crohn's Disease when my oldest son was 7 months old. I was one sick puppy--that's for sure. The way you are describing your symptoms matches mine at initial diagnosis. When I had the first colonoscopy the Crohn's was involved in about 85% of the bowel. How I didn't have surgery right then is a miracle--but I'm 3 weeks postop now. Keep on them for sure. Are you close to a University hospital? I know I have lots of questions. You hang tough and hope you get some answers soon. This is a wonderful site--everyone is really helpful and full of knowledge--you are in good hands. :heart: Keep us posted! Dana

Thank u Dana

When I was forced to change gastro doctors due to insurance I went to everyone that was involved with my gut and got ALL my medical records including all my MRI/ct scans. I took all these to the new doctor but not sure he read them all. The health system here in Idaho is pretty weak and I wish I was near a university hospital. This new gastro clinic came highly recommended but the patient load they have is rediculous. All I got from the nurse about my pill cam results was that they saw inflammation in two areas of my small intestine. So it can't be ibs... I'm pretty sure my original doctor had my chrohns diagnosis right I just need to get this new doctor on board. It is very frustrating and exhausting bc I have a very active 4 yo and a 10 month old baby. Waiting 3 wks is def going to suck

Thank you so much for being supportive I really need that bc it is hard to get other people to understand.

I can totally understand the not wanting to wait a month to find out. I'm currently in the same situation and had mine moved up in a very nice way.

I went to the office and told the girl that it would be hard for me to make that morning appt and could she please look for an afternoon appt. I did make sure to tell her that I really don't want to have to wait even longer so if the only thing they had was after my currently scheduled appointment, then I would just have to make do.

I got moved up a whole week. I know it's not a miracle move, but every week puts me a little closer. At least that's how I look at it.

Yea I'm going to try that usually if Im emotionally upset I can get results which is horrible bc it's the only way I can get them to listen

Hang in there, and I totally agree get your medical records and if you can self refer then have at it. I am in the medical field and understand how frustrating it is when you feel like just a number. I believe you first docotor was spot on. Your symptoms souns just like mine where before I was dianosed and was started on medication. I am now getting ready to ahve a resection to get rid of some severe stenois caused by the severe immflamation when I was so ill. So please don;t wait for them take charge. Good luck.

Hello Elena and welcome :hug: I am astonished at the problems you have been having. Not sure I would have a lot of faith in a medical professional who thinks it is fine to leave someone with inflammation in their body untreated. I would keep on at the docs until they bring your appt forward or are at least willing to prescribe something to help you until you do see them. Will keep fingers crossed and let us know how you get on.

Hi Elena. Welcome to the family.

How far away from Logan, Utah are you? I live south of you, in Ogden, Utah. We have great doctors and hospitals here, including a University Hospital in Logan and one in SLC. It may be worth a trip if your in the southern parts of Idaho.

We have others here, like you, who were diagnosed, then had the diagnosis retracted. It seems to me that your symptoms match IBD for sure. I'm no doctor, but I wouldn't give up on this.

Hang in there, sweetie, and welcome once again.