Newbie - The Short and Long Verision

Hi all,
I am brand new to this site and Crohn's, well that is what the doctor highly suspects. Where do I start....well I guess with the short for those that hate long posts because I am a rambler.

Two weeks ago I went to the doctor because the reoccurring abdominal pain had returned with a vengeance. Feels like someone boring through by abdomen through to my back. He suspected that I may have a gallstone partially blocking a bile duct. I had my gallbladder out 3 years ago (no gallstones then either but I will get to that in the long version). He ordered blood work, CT, and a referral to a surgeon. Blood work came back with wbc + lymph# neut#, platelets, and alk phos high. Finally got to see the surgeon on the 21st. She rushed the CT and had it done on the 22nd. CT showed small bowel inflammation. With all my other symptoms she highly suspects Crohn's. Have colonoscopy and upper endoscopy schedule for this next Friday. I am currently taking prednisone, just started yesterday and have Norco for the pain, but doc said I really needed to limit the intake of it. At least the severe diarrhea is lessening. Did I mentioned I have lost 25 pounds in less than four weeks.

I have heard of Crohn's but really know little to nothing about it. On one hand I definitely don't want Crohn's but on the other I would love answers to this pain and constant diarrhea.


Long version....If I have Crohn's, how long has it been undiagnosed??? I don't know if we will ever have the answers but maybe some of you will have some input. So here is my medical life story.

I have had digestive issues for almost my entire life. It started when I was about 13. At that time I was 5'4 and only weighed 85 pounds. My mother took me to the doctor because of severe stomach pain and constipation. Doc ran blood work and said I was suffering from malnutrition. However, I was eating, but we took him for his word and I just ate more and add a major variety of vitamins. The constipation and abdominal pain continued but I did start gaining weight. So I just put it up to the vitamins. Skip to about 17. This is when the sudden urges started. If I ate certain food I would immediately have to find a bathroom and hope I made it. I had grown to almost 5'6' and now weighed about 116 pounds. I learned to adjust my life around my bowels. I just stopped asking doctors. They never seemed to take it serious. At age 26 I had a complete hysterectomy due to endometriosis and large cysts that would grow on my ovaries. I give you this titbit because it plays into my weight gain. The next few years I slowly gained weight, but still had the bowel issues. Doctors all said it was due to my hysterectomy and the hormone replacement therapy I was on. In 2005 I went for my annual gyn appointment and I was having some pretty bad abdominal pain at that time. He immediately referred me to a Gastro surgeon as he was sure I was having a gallbladder attack. He said I was green. :lol:

I go to the Gastro, go through so many tests I can't even remember them all. One doc thought he saw something with my small bowel. Mine disagreed. Had an upper endo but no colonoscopy. He said I had IBS and sent me on my way. I don't remember any tests for my gallbladder.

So skip to 2010. In between I blew up to over 200 pounds but still had the bowel issues, but worse. I started having dizziness, hip pain, shooting pains in my legs and arms (like electrical pulses), and fatigue. We had moved so I had a new GP. He started running tests. This was January 2010. Well, this time they said my thyroid was giving out and I was put on hormone replacement for that. However, the pharmacist filled the prescription for 10X the dose prescribed. So instead of getting better I got sicker. By April 2010 they got the thyroid straightened out but was told it would make very hard for me to lose weight. I still had eating and rush to the bathroom issue. I really tried to watch what I ate. At the end of July 2010 I became very ill. I started vomiting almost constantly. I couldn't hold down anything. Even jello. I was running 104 fever. Went to the doctor said it was the flu. When I wasn't better in a week I went back. He started running tests. He prescribed a mild antibiotic. Got even sicker. Was back in the doc about a week later. Still running the fever, still vomiting and not able to eat. He started running more tests. Two days later my pee turned brown. I immediately call the doctor. He got me in. The nurse took one look at my sample and yelled for the doctor. He order more blood work stat. He sent me home. Before I could pull into my driveway he called to have me immediately go the emergency room. My liver enyzmes were through the roof along with some serious issues with my wbc. There they ran more blood work and did an ultrasound (they said it should nothing, no stones) After hours of waiting they discharged me to go home. Doc prescribed me Cypro for an intestinal infection, schedule me for a Hida Scan and referred me to the surgeon. Had my Hida Scan, gallbladder was working at 6%. Met with the surgeon. He scheduled me for a gallbladder removal for the next morning. But he also had my blood sent out to a hematologist because my white differential showed signs of leukemia. Thankfully the hematologist was able to rule it out. Said the count was probably due to the gallbladder issues I was having. I was so thankful to have my gallbladder gone. It helped me immediately. I had lost 35 pounds in six weeks. I had never been so sick. I honestly thought if they didn't figure it out I was going to die.

So after having my gallbladder the abdominal pain lessened greatly. I was able to eat again. But I still suffered with the loose bowels, hip pain and shooting pains in legs and arms. I would have occurrence of the what felt like a gallbladder attack but most would subside within a day or two, so I never worried about it. I just figured I had ate too much fat or something that my body couldn't handle without a gallbladder. I have dealt with this for the last three years. But the pains were getting worse and worse. The latest trip to the doctor was not only prompted by the pain but what would be for me significant weight loss.

So that brings us back to where I am today. Waiting for the answers. I am sure I left out a lot of aliments that I have suffered with but I think this too long already. I can only say a prayer and hope that I will have answers soon and that something can be done.

Thanks for listening.
Reflection

I see I may have posted this in the wrong section. Will post over in the undiagnosed.

Hi reflection, sorry it's taken so long to find your post! I hope your starting to feel better now they have you on the wonder drug that is pred. From the information you have given I would be extremely shocked if you didn't have Crohns, your story sounded very similar to my teen years prior to diagnosis when I was in my 20's.

Unfortunately a lot of the symptoms of Crohns can also be related to other conditions or body issues and testing for the disease can prove expensive and in a lot of cases inconclusive. As such it can go undiagnosed for some time, also while some people with crohns find they have some issues it is never enough to require medical intervention for a long time and that can contribute to the condition being undiagnosed.

I'm sorry you've had such a long road to getting properly tested but hopefully now your on the right track you can get your diagnosis and the proper treatment and can start to look forward to a higher quality of life ahead.

I hope you feel better soon.

Just wanted to welcome you to the forum! It seems you have been through so much. I hope you are able to find answers soon with the upcoming tests.

We have a Test sub-forum(<--click here) you may want to browse through as well as a Treatment thread(<--click here) with a Pred thread(click here) that may be of some interest.

I hope your testing goes well and you are on the way to find some lasting relief soon!

Thanks Pointy and Clash. Pointy, you think that is a lot. I left out half because of how long it was getting. Figured they weren't Crohn's related but the more I read I wonder. I am now 43 almost 44 so this is a long time in process. Pretty much my fault because, frankly I gave up and just dealt with it. My pain tolerance is pretty high now. Heck I shattered my wrist and cracked my sternum in an ATV accident. I just looked at my boyfriend and said "I think you should take me to the hospital". I couldn't even breath...lol.

Anywho...back to the symptoms. Eyes, I have a rare disease that is called Thygueson's Disease. BUT there is not test and is only diagnosed on symptoms. Now I wonder if it related to CD??? Hip pain with low back pain that is off the chart at times where I can hardly walk, could this be related? I am just trying to learn enough about this so if everything comes back positive I will be ready with my list of questions for the doc. Cause I am sick and tired of being sick and tired. I am 43 and my 69 year old mother is in better health than I am. Cheers and thanks for commenting. Just having people that understand helps a lot.

You can get what's called extra intestinal manifestations. Usually affects the eyes, joints and can affect the bladder. We have a forum for that you might want to have a look at just incase some one has had simmilar experiences to you in that area.

In my left eye I had inflamed blood vessels that swelled and burst, caused swelling of the retina. Luckily I had an amazing ophthalmologist who managed to save about 95% of the site in that eye for which I am eternally grateful!

If you ever want to talk about anything Crohns related my doors always open

Well, after over a year of tests I was finally diagnosed with Crohn's in Oct 2014. It was finally found via CT-Entography and capsule endoscopy. I had inflammation show up on the CT-E and then the capsule showed ulcers throughout my small bowel. All were in areas that the upper endo and colonoscopy couldn't reach.

I have been on 9mg Budesonide since October and getting ready to add Azathioprine. Just happy to finally have answers and working my way to getting into remission.

My advice out there to all that fighting for a diagnoses. Don't give up. Trust your instinct and make sure you have a doctor that actually listens to you and wants to find answers for you. It may not be Crohn's or UC in the end but the goal is for you to know what is wrong and have a treatment plan.