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Date of last update: 10/15/2017.

Forum Name: Gastroenterology Topics

Question: Different Diagnosis By Different Doctors?

 Onelildarlin2u - Wed Nov 29, 2006 12:14 pm

I've posted on here a couple times about the problems I have been having recently and what to thank you for all your help thus far. I have been having severe stomach pain and vomiting since Halloween. Had a CAT scan done that showed severe thickening and inflammation of my large intestine and a complex cyst. Monday night severe pain I called my doctor who said she had just gotten the results of another ct scan with contrast and that I also have thrombosis of the aorta. I went to the ER. They couldn't believe that I had that as they said only elderly patients get that (I'm only 29) But that at this point is was nothing to worry about. Did say I have diverticulitis gave me morpine and tordal and sent me home. My other doctor said I have ulcerative colitis. Can you have both? It seems to me I should be on some kind of treatment or meds besides pain killers and nausea medicines. Any advice on this one? I'm so frustrated and don't really know what to do.
 Dr. Tamer Fouad - Thu Nov 30, 2006 11:44 am

User avatar Hello,

I am very concerned about your symptoms. I do not want to alarm you but I think you should take another opinion. Did your doctors comment on your complex ovarian cyst. Did they recommend further investigation (CA-125?).

The presence of aortic thrombosis is very rare in the absence of aortic dissection or aortic aneurysm or atherosclerosis (a disease of old people). It could result from hypercoagulable states. This may occur due to an inherited condition in your blood's coagulation proteins or less commonly from cancer.

Thickening of the intestines is also not something that should not be taken lightly. Ulcerative colitis / Chron's disease are diagnosed by a colonoscopy and biopsy.

What's the next step? Well your primary care physician / family doctor needs to evaluate your scans and make sure you do not need a referral to the GI doctor or the oncologist.

I will check back on this topic until you have this condition resolved.

Best regards,
 Onelildarlin2u - Thu Nov 30, 2006 12:42 pm

Thank you so much doctor for your input. I go for another ultrasound tomorrow and a CA-125 test. I haven't had a colonoscopy done. Just 2 Cat scans one with contrast one without. When I go tomorrow I will ask again for another referral to a gastro doctor. I just don't know what else to do. The nausea meds don't always help and I have tons of pain meds and prescriptions for more. I have no idea what Thrombosis of the aorta means really. I googled it and got no success. But the ER doctor told me it "had built up like plaque" and because of that it was of no concern. What kind of doctor deals with this problem? A cardiologist? Do you think I need to follow up on that as well? They really acted like it was nothing but did say they were shocked that I have it at such a young age. I really appreciate your input on all of this. Thank you
 Dr. Tamer Fouad - Thu Nov 30, 2006 1:00 pm

User avatar Hello again,

I am glad to hear that you'll be doing the ultrasound and the CA-125. Lets get the ovarian cancer out of the way first. It can account for many of your problems. Once ruled out endoscopy would be the right thing to do.

I do not think your aortic thrombosis would be related to a plaque formation (atherosclerosis). I am more inclined to believe that it may be a hypercoagulable state.

So here's the plan:
1. Get ovarian cancer ruled out or at least less likely.
2. Only then (unless new symptoms arise / step 1 above takes ages) should you rule out GI problems. Before you go to a Gastroenterologist it wouldnt harm to get a test called occult blood in stools done. Try to get that done tomorrow.
3. If everything else is safe then you should check with a cardiologist.

Keep me updated.
 Onelildarlin2u - Fri Dec 01, 2006 6:45 pm

I went for the repeat ultrasound today. I was crossing my fingers the cyst was gone but it is still there and slightly larger. She ordered the CA-125 test and said it would be back by the end of next week. We are both hesitant in taking my last ovary as I'm not really for menopause at 29. She believes it is causing some of my pain but wants to hold off on any kind of surgery till we find out what is causing my other symptoms. She will call me with a referral to a Gastro doctor Monday morning. I did get copies of my records and found something that puzzeled me. I was seen in 05/2006 for a kidney stone and had a CAT scan done. On my new Cat report it states "There is atheroslcerotic disease of the aorta with some mural thrombus identified in the infrarenal aorta. This would be more than expected for patients age and has increased since the previous scan". If they saw it in May why wasn't I told about it? Another thing it says is " Patients oral contrast had just reached the colon. Patient does have scattered colonic diverticula. Next step....gastro doctor.
 Dr. Tamer Fouad - Sat Dec 02, 2006 4:09 am

User avatar Hello,

I am glad that you seem to be on the right track now. Please keep me updated.
 Onelildarlin2u - Mon Dec 04, 2006 3:26 pm

Good news! My CA-125 test came back and it was normal!!! That is such a relief that I don't have ovarian cancer. She did however say she thought surgery was necessary.

Also got my referral for the gastro doctor. It's not until Jan.4th. I called and told them I couldn't wait that long. I told them about the pain and the vomiting. They put me on the cancellation list in case someone cancels their appt. They also said if my doctor calls them they could probably get me in sooner so I'm working on that.
 Dr. Tamer Fouad - Mon Dec 04, 2006 5:05 pm

User avatar Well that is good news indeed!

Congratulations! Keep us updated.
 Onelildarlin2u - Thu Dec 07, 2006 6:39 pm

Another update! I got in early with the gastro doctor and went today. He said he was very concerned about my symptoms as well. He did a quick exam and said I have a lot of swelling on the right side of my stomach. And when I weighed in I had lost 11 pounds. He said he really wasn't sure what all is going on but said it could be a blockage or Crohns disease. Said he thought it was serious enough for a colonoscopy and endoscopy asap. So I am scheduled for that on this Monday. Hopefully this will give us some more answers.
I want to thank you again for all your information and advice thus far. I will post back after my procedure.
 Dr. Tamer Fouad - Fri Dec 08, 2006 6:52 am

User avatar Thank you for the update. Be sure to post the results as soon as they are in.

Best regards,
 Onelildarlin2u - Mon Dec 11, 2006 6:59 pm

I had my procedure today and I was hoping you could put some of this into simple terms for me.
Grade 2 esophagitis in the lower third of the esophagus compatible with erosive esophagitis.
erythema, granularity and mosaic appearance in the whole stomach compatible with non-erosive gastritis.
Internal hemorrhoids.
polyp 25cm in the sigmoid colon.
shallow aphthus ulcerations in the ileum in the terminal ileum compatible with possible Chrohns disease versus artifact, NSAIDS, or other.
He told me he removed the polyp and took several biopsis and will call me in a few days. What does this mean?
He also said he wanted a different type of Cat scan of the Thrombosis of the aorta.
Please let me know what you make of all this.
Thank you
 Dr. Tamer Fouad - Wed Dec 13, 2006 4:26 am

User avatar Hello again,

Well the most serious of your findings is the possibility of Chron's disease. It all depends on the biopsy now. Other than that it seems you have an erosive esophagitis (which means ulcer and inflammation of the esophagus).

Sorry I may have missed this if you said it before but have you been taking NSAIDs, painkillers for a long time?

Best regards,
 Onelildarlin2u - Wed Dec 13, 2006 9:40 am

I think the NSAIDs is like asprin or Ibuprofen? If it is no I never take that. It hurts my stomach. I have taken alot of percocet recently but other then that just Tylenol and Tums.
He said it could be Chron's disease. Can you tell more about it? How is it treated? Does it explain my symptoms?
 Onelildarlin2u - Fri Dec 15, 2006 1:58 pm

Well my biopsy came back everything was okay. The only thing it showed was substantial inflammation in the ilieum. Which is good news........but also leaves me frustrated as I feel I still have no answers. I just don't know what else to do. My gyn thinks I should see a urologist as she can't explain where the blood in my urine is coming from. They did a culture and it was negative and no bacteria. Some days there is a lot of blood and other days I don't see any. They did a urinalysis that came back normal execpt for large amount of blood. I just don't understand where the pain is coming from.
 Dr. Tamer Fouad - Mon Dec 18, 2006 2:38 pm

User avatar Hello,

Any progress?
 Onelildarlin2u - Tue Dec 19, 2006 8:17 pm

No more news to report. I'm at a stand still and don't know what else to do. I know I'm facing the surgery for the cyst but I want to put that off as long as possible.

I do have a follow up with the gastro doctor on Jan. 11th. But my tests were fine except for the "substantial inflammation of the ilieum".

I'm very discouraged at this point. I have a history of getting "rare" things that are hard to diagnose. When I was 13 I had a rare spinal tumor. It took numerous tests and 9 doctors later before they found it. I was the 10th case in the US to have this type of tumor. They took pictures and put articles in medical magizines.

3 years ago I went to the ER with a high fever and severe headache.......they told me it was the flu and sent me home. In the early morning hours I thought I was dieing and my husband took me back to the ER. I was later given a diagnosis of bacterial meningits but they were never sure if it was spinal or not. I spent almost a month in the hospital.

My father is it possible it is a blood thing? Are people of European decent prone to different things?

Not sure where to go from here. I'm to the point where I think I will just live with it till it gets so bad I have to return to the ER. Any suggestions?
 Dr. Tamer Fouad - Wed Dec 20, 2006 5:20 am

User avatar Hello,

I understand your frustration. So the next step is the urologist / gynecologist? If someone will remove the cyst I would suggest discussing with your doctor if it could be a surgical oncologist that does the operation.

CA-125 is a relatively sensitive test for the most common types of ovarian cancer but its not the 100% accurate.

Please continue to follow your doctor's advice and don't give up. don't forget to post your updates here.

Good luck!
 Onelildarlin2u - Wed Feb 14, 2007 9:04 pm

Another update....... I went today to get a second opinion from another Gyn doctor. She said she was 80% sure the mass I have is an endometrioma? Her advice was to come back in 2 weeks for another ultrasound and schedule a laprascopy at that time. She said she would cut out as much as possible and then start me on Lupron for 6 mths to put me in menapause so whatever was left will die off. She doesnt want to take the ovary but she said if it looks bad or if they are suspicious that it could it be malignant they will take it then. She also said this treatment may only work short term and there is a good chance I could end up back in the OR a few months later with the same problem. She told me the Lupron was going to be very hard on me emotionally and physically but that its at least worth a try. Any advice? Any info about the Lupron injections?
 Onelildarlin2u - Thu Feb 15, 2007 2:09 pm

Well I googled Lupron and now I'm terrified to even take it. Women as young as 17 have had severe side effects that are irreversable.

Please give me your take on this drug. I thought I was looking at hot flashes, night sweats, and depression. No idea that it cause, strokes, heart attacks, osteoporosis, memory loss, severe depression, etc.
 Dr. Tamer Fouad - Thu Feb 15, 2007 3:09 pm

User avatar Hello,

Good to see you here again!

Actually I have asked my colleague, Dr. Leih Anderson (a gynecologic oncologist), to review your case. I think we would all benefit since this is her area of expertise. Please be patient while she finds time to respond to you.

Best regards,
 Onelildarlin2u - Thu Feb 15, 2007 3:34 pm

That sounds great, I will take any and all advice and info I can get! I also wanted to post the 3 options she said I had. She said we could:
1) Take the whole ovary out.....but she didn't recommend this. Said by the time I was 50 I would start having broken bones, fractures, and osteoporosis. Also said my chances for heart attack and vaginal atrophy would greatly increase.
2) Laprascopic surgery to remove as much as possible of the mass and begin Lupron for 6 months.
3) Try just the Lupron but will not see any results until 6 months if it even helps at all.
She recommended option 2 but after reading about Lupron I'm scared and unsure. My ultrasound is scheduled for Feb. 28th. I'm still having a lot of pain and nausea but now I have a "heavy feeling". Feels like something is pulling inside?
She too had no clue what the "thrombosis of the aorta" was and what to do about it. I'm going to assume its nothing serious or I feel someone would have said something beside "its highly unusual that you have this at such a young age". Again, thank you so much for all of your input. This board has been a life saver for me!
 Onelildarlin2u - Wed Feb 28, 2007 7:06 pm

I went to the doctor today and had another ultrasound. They will call me next week with a surgery date. Still unsure about the Lupron treatment?

On another note, she said after the surgery she wants to refer me to a vascular surgeon to further investigate the Thrombosis of the Infrarenal aorta.
 Onelildarlin2u - Mon Mar 26, 2007 1:18 pm

If your still following this, here's the latest. I had laprascopy surgery the 13th. I was still groggy from the anesthicia and I really didn't remember what all was said. I had my post op visit today and she showed me pictures and explained everything to me.

She said I had the worst adhesions she had ever seen. Ovary had attached to my bowel and side wall and bowel was pulled up really high where it shouldn't have been. She said they cut and burned out as much as possible. She said they were able to remove it from the bowel but the adhesions were so thick on the side wall they could not get it off. She could only see the very top of the ovary and couldn't see the tumor either. So today she said we will ultrasound and watch it and make sure it doesn't get any bigger. Shes hoping this will help with all the pain (so far so good). She said the next time she would have to make an abdominal incision and probably remove the whole ovary.
 Dr. Tamer Fouad - Thu Mar 29, 2007 1:13 am

User avatar Hello,

Thank you for the update. I am happy to hear that you are improving. Why did your doctor think you had adhesions? Did you have any previous abdominal surgeries?

Best regards,
 Onelildarlin2u - Thu Mar 29, 2007 12:49 pm

Yes I have had many surgeries about 5 for cysts 2 abdominally and the other three laprascopy. Also had an abdominal hysterectomy, gallbladder, rectovaginal fistula repair, tubes tied, removal of endo.

She did say she was concerned with the ovary being attached to the side wall like that my pain might return. Also worried about the adhesions coming back. But I must say as of right now I feel 90% better. (Still a few sharp pains in my side every now and then, but nothing like before)

Thank you!!

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