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Crohn's Disease Forum » Support Forum » Undiagnosed Club » CT Done - Scopes Next - Doc pretty Positive it's Crohn's


08-24-2013, 10:52 PM   #1
Reflection
 
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CT Done - Scopes Next - Doc pretty Positive it's Crohn's

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. What are the implications from being undiagnosed???

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.

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. I was started on zantac at that time.

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 the eating and rushing 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. I was put on Nexium during the early part of 2010 as my zantac was not working and the heartburn and nausea was unbearable. I am still on it to this day.

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. In March of this year I went to the doctor for the hip pain and shooting pains in the arms and legs. More blood work showed low folic acid. So I was put on folic acid supplement. MRI was ordered by it got lost in the shuffle and was never done. I figured the doc wanted to see if the folic would alleviate the issue. I learned later that was not the case but the person in charge of submitting to insurance for approvals never did it. 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
08-25-2013, 02:15 AM   #2
bozzylozzy
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Hi reflection.. welcome to the forum! Sorry to hear that you have had a long history of symptoms.

Just so I understand.. as your thread title suggests.. you have had a CT - are you under a new GI now? What were the results of your CT scan?

You definitely need to have a colonoscopy and make sure they take lots of biopsies! If your abdominal pain is more centralised around the belly button - a pill cam could be a good option for you to check the small bowel.. there are a lot of tests that can be done to check for IBD.

Do you have any family history of IBD?
Best of luck to you.. and please keep us updated
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08-25-2013, 04:25 AM   #3
Reflection
 
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Hi Bozzy thanks for replying. I don't have a copy of the ct relsults yet but when the surgeon called she said I had signifigant inflammation in the small bowel where it meets the colon. She did indicate that she would be taking lots of biopsies. She is a general surgeon. I live in a very rural area. The GI here has a long wait and they didn't want to wait to get me a diagnosis. I would assume that once I have a firm diagnosis I will be referred to him.

My pain is actually more under my right ribs similar to where my pain was during my gallbladder attacks. They ran blood work for pancreantits which came back in the normal range. I also have some major mid-back pain

I don't have any family with IBD. But my little brother, 10 years younger then me, has had repeated issues with polyps and ulcers in his bowel and blood in the stools. They didn't give him a diagnosis. My sister has similar issues with no diagnosis. I informed them that if mine is confirmed that when they have a flair up that they need to be tested.

I made a huge mistake tonight. I didn't realize that beans were hard to digest. I had made my family a pot of beans and ham. I had a very small bowl. But I am in some major pain. Thus why I am up st 2:20 in the morning. Lesson learned. Pain meds aren't touching it.
08-25-2013, 05:24 AM   #4
bozzylozzy
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Definitely seems like IBD to me.. im glad the general surgeon is looking to do these tests for you..
When is your scope scheduled for?

I am undiagnosed but my mother and grandma have dodgy bowels and my uncle has ulcerative colitis.
If things become really bad for you and you are waiting a long time for the next tests, it may be worthwhile trying the low residue diet for a while to give your bowels a rest. (This is where you cut out high fibre foods.. ) I found that helped me.
08-25-2013, 11:09 AM   #5
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Sorry you haven't been able to get answers Bozzy. My scopes are scheduled for this up coming Friday.
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