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11-15-2012, 10:54 AM   #1
tiredofbeingsick
 
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My Story

Hello I posted in the Undiagnosed Club but wanted to come over here and make a full introduction. First let me start by saying I have had bowel issues all of my life (namely bothersome diarrhea). When I was in my early thirties I was dx with a Spastic Colon. I also have a history with other autoimmune diseases (probable Autoimmune Hepatitis) not bad enough for treatment as my liver enzymes roller coaster and my liver biopsy stated my liver was minimally inflamed at the time (2004).

I have had multiple Abdominal Ultrasounds, CT Scans and MRI and blood tests through the years. Everything always appeared normal. Fast forward to March of this year. I was having some severe lower abdominal pain on my right side and I feared it was my appendix. Appendicitis runs in my mothers family and my own daughter had to have hers removed a few years back. So I wasted no time getting to the Emergency Room. They ran a CT scan and everything was fine but my Gallbladder Wall was thickened. They recommended I see my GP who would refer me to a surgeon to further evaluate the Gallbladder. At the time I had no insurance so I did not pursue anything further.

We recently moved to a bigger city and given the fact that I now had insurance and my stomach pains were getting worse I decided to find an Internist to use as my GP and go from there. He took down a detailed history and decided to order another abdominal ultrasound. I went and had the Ultrasound and it showed no Gallstones but Gallbladder Polyps. So my GP referred me to a Surgeon and a Gastroenterologist chalking it up to possible Gallbladder problems. I saw the surgeon who ordered a HIDA scan.I had it done and it came back with an 89% ejection fraction which was normal and showed several small Polyps. It also stated that I had some biliary reflux into the stomach. The Surgeon stated that he did not feel removing my GB would solve the problem with the issues I am having. He also stated that Polyps do not cause pain. He wanted me to keep the appointment with the Gastro Doc.

I saw the Gastro Doc two days later and he decided to do an EGD. I had that done on Monday of this week. He stated I had a Hiatial Hernia and that my stomach and esophagus were inflamed. The doc took a couple biopsy's during the procedure and I am currently waiting on the results of those. He further stated when he had finished the procedure that we were going to have to look outside of the stomach to narrow down the source of my Pain.

So now I am at a standstill wondering what is going on with me and what else he is planning on doing. I was so out of it from the sedation that I did not think to ask him those questions.

These are my current symptoms and medical diagnoses:
  • Diarrhea-Daily Greenish/Yellow Color-Bile??
  • Reflux
  • Abdominal Pain-Burning, soreness on Right Side upper and lower
  • Fatigue-Tired and easily fatigued
  • Migraines frequently
  • Anemia-Take Iron Supplements
  • Trigeminal Neuralgia-dx in 2004
  • Probable Autoimmune Hepatitis-dx 2004
  • Hypertension-dx 1983
  • Elevated Liver Enzymes-dx 2004-rollercoaster
  • Kidney Stones- two bouts dx 2004

I am wondering if I might actually have an IBD? Any thoughts?

Last edited by tiredofbeingsick; 11-15-2012 at 11:13 AM.
11-16-2012, 11:53 AM   #2
David
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Greetings and welcome

Wow, I'm sorry you're having to deal with such terrible symptoms. That must be so rough

Is it possible that you have an IBD? Yes, it is. Of course, there's plenty of other possible causes as well. Was your GI planning on doing a colonoscopy?

You mentioned the anemia. When you have your blood tests done, is anything else ever abnormal?

Have you ever had your vitamin B12 levels tested?

Again, welcome!
11-16-2012, 02:14 PM   #3
tiredofbeingsick
 
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Greetings and welcome

Wow, I'm sorry you're having to deal with such terrible symptoms. That must be so rough

Is it possible that you have an IBD? Yes, it is. Of course, there's plenty of other possible causes as well. Was your GI planning on doing a colonoscopy?

You mentioned the anemia. When you have your blood tests done, is anything else ever abnormal?

Have you ever had your vitamin B12 levels tested?

Again, welcome!
David, Thank you for the welcome post! To answer your questions I have a history of elevated Liver Enzymes for years my ALP was always elevated as well as my ALT.

I had a General Health Panel ran on Oct 12th and the only abnormal results there were the following:
  • ALT 41- (0-40 range)
  • HGB 11.0 (normal range 11.1-15.9)
  • MCHC 31.4 (normal range 31.5-35.7)
  • RDW 15.7 (normal range 12.3-15.4)
  • Gran 75 (normal range 40-74)

I also had a Iron & TIBC Panel ran these are the results of that:
  • TIBC 385 (250-450)
  • UIBC 345 (150-375)
  • Iron 40 (35-155)
  • Iron Saturation 10 % (15-55 %)

So my Iron Saturation was low as you can see. My doc has ordered a CT Scan on Monday to look at the Pancreas, Liver and Kidney further. He said after that he will likely follow with a Colonoscopy. The EGD showed some inflammation but he took biopsy's and he said there was nothing there to explain the abdominal pain and anemia so he wants to investigate further.

Also had my Cholesterol tested and everything was fine but HDL which was 52 suppose to be >39.
11-16-2012, 09:11 PM   #4
David
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Interesting results. Please keep us updated on what the new tests come back with. And see if they'd be willing to test your vitamin B12 levels
11-17-2012, 06:33 PM   #5
tiredofbeingsick
 
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Interesting results. Please keep us updated on what the new tests come back with. And see if they'd be willing to test your vitamin B12 levels
I certainly will! Funny you should mention testing my B12 levels as my mother suffered from Pernicious Anemia and had to have Vitamin B 12 shots!
11-17-2012, 07:26 PM   #6
David
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Pernicious anemia is the primary reason I was mentioning B12. That your mother had it makes me lean that way MUCH harder. Definitely get your B12 tested and ASAP.
11-19-2012, 05:48 PM   #7
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Well I had my CT Scan this afternoon. The Radiologist said my Gastroenterologist should have the results by tomorrow afternoon. I guess its just a wait and see until then. I drank the Omnipaque Solution mixed with 24 ounces of Gatorade about 90 mins before the exam, then when I got there I was given a second glass of it to drink. I also go an IV with the contrast as well. That was a trip. It made my heart race and I thought I was going to pass out. The Radiologist told me that I needed to let my doc know about that in case he orders that in the future.

That happened the last time I had a CT scan but I had forgotten about it. I will be sure to let the doc know. Apparently my system cannot handle that either. I had not eaten all day so my hubby stopped at McDonalds and picked me up a cup of coffee and a cheeseburger, by the time I got home I was in the bathroom once again! I googled the Omnipaque solution and it seems that Diarrhea is a side effect of that as well.

At this point I do not know if the stomach issues was from my regular stomach upsets or because of the solution. I will be so glad to get some answers. Its miserable eating and then within 15-20 mins having to head to the nearest bathroom. Thanks for letting me vent and Ill post as soon as I have those results.

I will also ask the doc about checking my Vit. B 12 Levels when he calls with those results.
11-19-2012, 08:19 PM   #8
David
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Good luck with the results! Let us know what they say
11-20-2012, 01:08 PM   #9
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Well the docs office just called with the results of my CT scan: A big fat negative! I know I should be over the moon about that but can I just say I am VERY frustrated at this point! The last time I checked it is NOT normal to have diarrhea every day of the cotton-picking week is it? My stomach is sore to the touch and occasional burning pain too!

So, he has ordered a Colonoscopy but I am sitting here thinking what in the heck is the use in me getting that done because it will probably be normal too!

I am really starting to question my sanity at this point.
11-21-2012, 01:19 PM   #10
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I forgot to add that I asked the nurse about him checking my B 12 Levels and mentioned the fact my mother had Pernicious Anemia. Of course she shot that down right fast and told me that was something I would have to ask my GP to schedule. She would not even ask the doc about it! Grrrr!

Anyhow, the Colonoscopy is set for December 5th. I elected to go ahead and find out although I almost know given everything else was negative it probably will be too. It is just frustrating knowing something is causing this stomach pain and soreness and not to mention the big D on a daily basis. Yet they cant seem to find anything.

Ill update again when I know more. Hope everyone in the US has a Happy Thanksgiving tomorrow!
11-22-2012, 12:14 PM   #11
David
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I'm glad the CT was negative but I understand your frustration as well.

I think a colonoscopy is great as they can then check for microscopic stuff as well. And ask that GP for the B12 test ASAP
12-04-2012, 11:16 PM   #12
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Just updating this thread. My colonoscopy was scheduled for in the morning but I have had to reschedule due to unforeseen circumstances. The last two weeks my knees have been hurting and it has gotten worse every day.

Today I noticed that my left knee is swollen around the knee cap and there is a huge pocket of fluid around it. I am unsure if this is related to my stomach issues or not. It hurts when I stand up, sit down or climb into the bed (Basically anytime I have to bend or flex my knees). I have not injured myself in any manner that I can think of so I have no clue what brought this on. I plan on calling my internist in the morning to see if I can get in and sort of get his opinion as to what could be going on with my knees.

I have to keep the heat pad on it. My sister gave me some cream that the doc gave her for her knees. She has Osteoarthritis. I have yet to use it but I may before bedtime. It is an NSAID cream.

At this point I am wondering if this new issue with my knees could be related to my stomach problems. I am just grasping at straws. I do not want to make a mountain out of a molehill, but yet I do not want to overlook something that might potentially be linked together. Any thoughts?
12-05-2012, 12:57 AM   #13
acheallova
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Welcome tired,
I do hope your tests come back with something definitive for you to work with. It is very frustrating and mentally exhausting " not knowing" what exactly is going on. Wish you the best of luck. Keep us posted! - hugs-
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12-16-2012, 01:34 PM   #14
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Update: Well my bowels have slowed down sort of normal now. But for the past three days I have had severe pain in my lower left abdominal region into my back on that side. I feel as though I may have trapped gas that I cant expel. (sorry tmi).

What the heck could this be? At this point my frustration continues. My left knee hurt for over two weeks and was terribly swollen with lots of fluid it seems to have gotten better and now this! I swear I am falling apart. Still waiting on my Colonoscopy the first week in January.

Any thoughts? Let me just ask this, if anyone has lower left abdominal pain with their Crohn's can you describe to me what it feels like? This feels sort of like an abdominal stitch, where you get a catch when you have walked too much and cant walk without bending over and clutching your side? Would appreciate some input. Thanks in advance!
12-16-2012, 02:24 PM   #15
nativesith
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I am in the same boat. Pain constantly in my left side. Varies sometimes it feels like I been running and get a side ache , only this one does not go away. Other times I feel really bloated and the pain feels like waves. When the pain is worse the issues with my knees and hips begin to arise. Some days I feel I move too slowly. Feels like circulation to my legs is not all it should be in the morning.
Pain is the biggest issue I ave. It is the last thing I feel when fighting to get some sleep. It is the first bloody thing I feel when I wake up. Excuse my language.
I am soo sick of feeling sick.
Colonoscopy and scope sheduled for Dec 27th.
I like you ave had many negative test results, I pray they find something that leads to answers to our prayer and well being.
May the Creator bless and help us.
12-16-2012, 02:36 PM   #16
tiredofbeingsick
 
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I am in the same boat. Pain constantly in my left side. Varies sometimes it feels like I been running and get a side ache , only this one does not go away. Other times I feel really bloated and the pain feels like waves. When the pain is worse the issues with my knees and hips begin to arise. Some days I feel I move too slowly. Feels like circulation to my legs is not all it should be in the morning.
Pain is the biggest issue I ave. It is the last thing I feel when fighting to get some sleep. It is the first bloody thing I feel when I wake up. Excuse my language.
I am soo sick of feeling sick.
Colonoscopy and scope scheduled for Dec 27th.
I like you ave had many negative test results, I pray they find something that leads to answers to our prayer and well being.
May the Creator bless and help us.
Thanks! I hope you get some answers as well. You have described exactly how it feels to me. Someone else on here suggested the possibility of Kidney Stones but I have had those twice in the past and this doesn't feel like they did at all, its different. So I really have to doubt it could be those, though I guess anything is possible. If it doesn't let up by tomorrow I am going to call my GI doc and see what he says. Keep us posted on your results!
12-19-2012, 05:49 PM   #17
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I finally was able to get my colonoscopy rescheduled but cant get in until January 23rd. The nurse was not a bit too happy that I rescheduled. But, oh well as they say, life happens.

Once I have some answers Ill update.
12-24-2012, 12:18 AM   #18
acheallova
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Oh tired,
Sorry to hear you are feeling poor. I do hope your tests find you answers and you get to feeling better soon. Keep us posted. Good luck!! -hugs-
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