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07-20-2011, 11:13 PM   #1
Crohn's Mom
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So I am scheduled for an upper endoscopy tomorrow after seeing my GI yesterday for a semi-urgent appointment set up by my Gynecologist. I have had one of these at least a few times before, although it has probably been around 8 years if I remember correctly.
Maybe it's the "urgency" of it that is scaring me?
I don't really like to talk about me too much on here; maybe it's because I talk so much about my daughter and sometimes my boys as well, I kinda feel like it's a bit too much ?? I dunno...
Anyhow, I have been really sick for approximately a month now. Long story short, I've been to the hospital twice in the last week, admitted once for extreme abdominal pain and 103F fever for 2 days. Of course I really learned next to nothing there except I had 2 cysts on my left ovary that are complex and one simple on my right. They honestly treated me like garbage and sadly I have excellent insurance!
So, off to my Gyno I went. I had a hysterectomy 10 years a go so the only thing left are my ovaries. Knowing this, and my history of undiagnosed digestive problems, led the doc to believe it's an underlying issue causing the cysts and they are not the source of pain. He personally called my GI doc while I was there and insisted that he see me that day, and wouldn't let me leave his office until the GI doc agreed. He agreed and off I went to see him.
It's been a little over 2 years since I have seen the GI, mainly because I put my own health on hold to take care of my daughters bad CD issues. He listened, and talked, and throughly went through all of my previous records. He ordered a TON of blood work which I went and had done this morning. He also ordered a ton of stool tests (arrghhh). Of course my guts have decided that they will NOT cooperate with those tests! LOL...I literally went from having D 10-15 x's a day to NOTHING as soon as I picked up the kit
oh well, I'm sure it will all come out eventually
So the GI doc believes I have severe adhesions in my lower abdomen and probably bowel either glued together, twisted, or glued to the abdominal wall...or all of the above, and the only solution is surgery. He really didn't speculate as to why I have this but we discussed Crohn's, and also we discussed previous abdominal surgery as a cause.
He and my GYN both said that there is "something" very wrong with me, they know this, but they just don't know what it is yet. Those words are probably why I am so nervous even though it's just an upper endoscopy tomorrow? Hell, I have pretty much thought, off and on, that I have CD for nearly 20+ years. (at least that is how long I have had problems and no answers).
That is also a big reason why I hesitate to post here...because it has been such an extremely long hard journey for me, and I don't want all of you to get more discouraged then you already are.

So, that's a tad bit of my story in a nutshell.
HOpefully, I can get a little sleep tonight. I feel really silly being nervous over this when I have been through sooo much more and I know this is such a simple procedure in comparison.

Thanks for listening girls!
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07-21-2011, 01:05 AM   #2
ShanBanana
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Hi Crohn's Mom...

Wow that is a lot to think about. You are not being silly That is some scary stuff going on there. But this could be a good thing- the test can show what is truly going on and hopefully lead to an answer- and if you do have to have surgery, maybe this can help you to heal and feel better in the long run. Keep us posted- I know that you said you don't post much on this forum, but you should- it has helped me so much. The support is great. My real life friends don't really understand my woes, but it really helps to vent on this forum to people who really get it. My prayers will be with you. I feel it is all going to be OK, but please, keep us updated!!!!
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07-21-2011, 05:48 AM   #3
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Tracy!!! Would ya tell us something??!! We care about you!! Not just because of your children! Good luck today....and if you don't mind...Let us know how it goes!!!
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07-21-2011, 04:22 PM   #4
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Well I made it through the UE with no complications I knew I would..I was just nervous.

Not too much info really to give, but I was surprised that I got a printout already of what his (the doctors) suspicions are when it come to my stomach and the extreme heart burn issues I have.

Espophogas: Gastroesophageal junction at 40cm. A sliding hiatial hernia is present. Peninsulas of gastric appearing epithelium extended into the distal saphenous. Biopsies were obtained of these peninsulas. No active erosions noted. Above this, the esophageal mucosa appeared normal.

Stomach: Patchy erythema with erosions were present in the antrum. The remainder of the gastric mucosa appeared normal. biopsies were obtained...

Duodenum: Normal-appearing mucosa. Biopsies were obtained...to evaluate for celiac sprue.

notes at bottom:
1.Gastroesophageal reflux disease with histology pending regarding the possibility of short segment Barrett's esophagus
2. Gastritis with erosions with gastric histology pending
3. Diarrhea was duodenal histology pending.

So like I said...nothing too interesting. Possibility of Barrett's Esophagus peaked my interest, but doesn't surprise me considering the long term, untreated, extreme acid produced in my stomach.
They should call with biopsy results in 7-10 days, but my appt. to see GI again isn't until the 16th. He did say if my pain increases to call immediately. And also that if I want, all I have to do is make the call to him and he will do a repeat CT scan anytime I want. I am hesitant for that because I don't believe it will pick up much and I want to lesson any more exposure to radiation if I can. I also asked if we could do an MRI instead of another CT, but his concern is that with MRI you have to lay still for a very long time (like 45 mins) and with the pain I am in we're just not sure if I can handle that right now. If I insist, I am sure he will agree. I am willing to wait this out a little longer now since I seem to have their attention a bit.

I feel pretty good after the procedure, and woke up very quickly from the anesthesia, so I was released within 20 mins My stomach is more painful than usual, but I expected that since they do blow a little air in.

Thanks for all the kind words everyone I truly appreciate the support!

edit:Patchy erythema with erosions in my own little opinion...I do know this is typical with Crohn's ...I hate speculating on what may be wrong with me...but I'm no idiot to this disease either. :/
07-25-2011, 05:55 PM   #5
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I hope this doesn't make me sound really stupid...

But does anyone ever feel like they have a "fever" in their lower abdomen when they're in pain? Or even when there's not so much pain, but it feels hot inside, like burning .., fever?? I have this too often and I've never mentioned it to a doctor before because I just feel kinda dumb even saying it...but, its there anyone else ? I hope I have explained this well enough that someone knows what I mean It's really bothersome...
07-25-2011, 06:15 PM   #6
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Wow, Tracy, I've read so many of your posts regarding Gab and your sons and I think you've done such a great job helping your kids through so many tough challenges! You've had, and continue to have, so much on your plate, I'm really sorry to hear that you are also not feeling well !!!

I really hope you get some answers quickly and are feeling better SOON!

Thinking of you...
07-25-2011, 07:36 PM   #7
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Hey T,

Remember the golden rule T! There's no such thing as a stupid or dumb question!

Matt often described the pain he had with the inflammation and abscess as a burning/stinging type pain. I don't know if it was related to one or the other or both.

I would definitely describe it to the doc as it may give them a clue as to what is going on.

Thinking of you mate,
Dusty. xxxxxxxx
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07-25-2011, 08:10 PM   #8
netnetroberts
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Tracy~ when i had endometriosis it would feel like that at that time of the month.. it would swell and feel very hot and throb!!! don't know if that helps.. i had a complete hysterectomy and have not had that feeling since.. but i can relate to what you are saying..
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Not diagnosed yet, but praying for answers soon!
Colonoscopy Spring 2010.. looked great no biopsies
Upper Endoscopy Fall 2010... looked good, Hiatal hernia did biopsies.. all came back normal
Breath Test (BAT test) Winter 2010 normal
The Egg Test (Delayed Emptying Scan) Winter 2010 Positive for Gastroperisis!
Currently undergoing a Sitz Marker Test which takes 5 days to complete.. will let ya know!
07-25-2011, 11:28 PM   #9
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Tess: Thank you for your kind words and support

Dusty: please thank Matt for not making me feel like a big dummy!

NetNet: I appreciate you sharing, but I know I don't have endometrosis and I've had all female organs removed except the ovaries 10 years ago

It just doesn't want to quit today...I already gave up my work day tomorrow and Wednesday. I can deal with the pain, but I'm really sick of feeling like I am becoming a "problem" at work tho (I'm glad my boss doesn't feel this way..yet). I sure hope I get some sort of answers soon...20+ years of this is just about enough I say!
Ok..rant and whining over
07-26-2011, 12:48 AM   #10
mayhavecrohn's
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hey Crohn's Mom good luck with your upper GI scope tomororw let us know what happens and how it goes here is a also hope you can get some rest tonight again
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07-26-2011, 01:13 AM   #11
AndiGirl
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Hi Tracy! I'm sorry that you've been going through so much unidentified pain for so long. It took my doctors about ten years to discover my CD. When I was younger, I had much longer periods of remission, so the damage didn't show up until later. My CD was identified in my ileum and parts of my colon. There are times when my guts feel like they are on fire. I have had asthma since I was 14 years-old. It has become progressively worse, so I've been off and on Prednisone for that before I was diagnosed with CD. My doctor's knew theory on my diagnosis is that the Pred. that I was taking for my asthma, could have slowed down my CD enough to make it hard to diagnose with a scope. Have you been on Pred. for other conditions?

You are such a sweetie, who has been through your share with poor Gabbie and your own symptoms. It's time that they found out what is wrong. Lots of love. Hugs to you.
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07-26-2011, 02:44 AM   #12
littlemissh
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Hi Tracey,
Only just seen this thread. Sorry to hear all the problems you have been having.
I just wanted to comment on the comment you made about patchy erythema with erosions. Although patchy erythema in the gut beyond the duodenum would be suspicious of crohns, in the stomach it is very common and unlikely crohns related. It can be due to overproduction of acid , the bacteria H.Pylori etc.
It is usually easily treated with a drug to lower acid production or if h pylori a course of antibiotic.
Here's hoping your next appointment in august goes well!!
:-))
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07-26-2011, 05:44 AM   #13
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Twenty years T!!! Yeah, I think it's time to focus on your health like a laser now that Gabs is leveled out. Push for answers while you can T!!
07-26-2011, 10:21 AM   #14
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thank you Littlemiss I do know it's more likely if it's past the duodenum etc, that's why I hate speculating on me. Problem is, I guess once you've been sick off and on (more on) for so long, and with so many different excuses/diagnosis from doctors it has a tendency to drive a person nutty. I have convinced and un-convinced myself of CD so many times. If I didn't just go through the hell with my daughters severe CD and everything that followed, I probably would still be trying to ignore my own issues. (although, it is a bit hard to ignore any of it at the moment). I am just ready for some answers. If I don't get any this time around I just may become certifiable
I hope your leg is getting better and you don't end up with another surgery! You have really had a rough road lately

Andi and Dex thank you as always
I'm going to keep pushing I've already contacted Gab's surgery center and they have (agreed) to do my surgery once I officially have or don't have a diagnosis. He needs to know, if possible, the definitive cause of the severe adhesions before he cuts me open again so he will know if he wants another doctors there at the Mayo to see me or not first. It's a start to get my foot in the door there anyhow....fingers crossed I get that surgeon...he's amazing !
07-26-2011, 03:27 PM   #15
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Tracy, sometimes I get that hot feeling in the stomach like you described. For me, it feels like I have a hot lava rock in my stomach. Like a dull warm/hot, sometimes throbbing, area of pain. It doesn't feel feverish though - I never seem to get a fever when I flare, although I do get awful chills and hot or cold (usually cold) night sweats - but whenever I check my temperature, it's normal or even a little low. Go figure! But anyway, I wouldn't use the word "fever" to describe it, but I do get a hot/warm feeling in my tummy from time to time.

Have you gotten the biopsy results back from your upper endoscopy yet? I think mine took about a week so hopefully you get yours back soon!
07-27-2011, 02:59 PM   #16
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Thank you Cat No, I haven't gotten results yet from the scope, blood tests or stool tests. I think he's the type of (jerk) doctor that will make me wait until the 16th for my appointment.

On another note, I went in for my appointment with the gyno for my "wellness" exam, and left with surgery scheduled for this Friday!
He is very concerned because I haven't improved at all pain wise, or anything else, since last week when I saw him. He's also quite p'd off at my GI doc for not taking things more seriously or being more aggressive. He said..I guess it's all up to him now and that's fine! I love this man, he's such a caring doctor.
So basically he is going in with laparoscopy and taking care of the cysts, possibly trying to take care of some of the adhesions, having a look around, and taking my appendix that has literally been a pain in my side for 10+ years. He said he has no idea what is wrong with me but he is determined to figure it out and get me healthy.
About the only thing I am nervous about is the possibility of waking up with out my ovaries...I really don't want to be forced into menopause right before my 40th birthday
Other than that, I am nervous/excited that maybe something good will come of this and I will know what is wrong. Or at the very least, we will know that it's not the cysts or my appendix causing the problem and move on from there.

Fingers and toes crossed that it all goes smoothly! This is happening really fast !
07-27-2011, 03:11 PM   #17
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Yes, I hope your surgery goes smoothly as well, and that you get some relief from whatever it is that is plaguing you. I have a GYN that is the best doctor in the world as well. He seemed more concerned about my GI issues last year than my GI did. Not that I think my GI is a jerk or anything, but he just isn't on the same level as my GYN. I hope you get to keep your ovaries too. That would be rough, to go through menopause so young. The things we women get to look forward to!!
07-27-2011, 03:22 PM   #18
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Hi,
I just wanted to say I went menopausal in 2009 at age 33 with my hysterectomy and ovary removal. I don't take any HRT's either due to the extent of my Endometriosis. (hormone replacement therapy) Its actually a great thing and not as bad as you would think. I deal with hot flashes which can suck but as long as you stay well hydrated its not bad. I love not being tied to the emotional upheaval of the hormones going up and down every month!! I hope they check for endometriosis though during your surgery!?? With the cysts its very likely the cause of all the adhesions. And it won't show up on any test until they do the biopsy during the surgery. I'm actually going to an endometriosis specilaist in August and the endometriosis may be what is causing most of my bowel issues, bleeding, pain, diarhea, etc. I read an article about a case study done that Crohns and small bowel endometriosis can mimic each other. I don't have a diagnosis for myself but I'm certain its one or the other and for me only another surgery will tell me which. (UGH) Good luck with your surgery. I just wanted to encourage you that sans ovaries, isn't so bad!!
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07-27-2011, 03:33 PM   #19
littlemissh
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Good luck for Friday!
07-27-2011, 04:05 PM   #20
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Twenty years T!!! Yeah, I think it's time to focus on your health like a laser now that Gabs is leveled out. Push for answers while you can T!!
Oh my! 20 years and then suddenly surgery on Friday. That is laser fast. Hopefully this is you on the road to lasting relief. Best of luck x
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07-27-2011, 04:34 PM   #21
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Thank you so much for the well wishes everyone !

It's probably a good thing that I've already had so many surgeries already (7), or I may be freaking out as fast as this was scheduled! LOL
(who am I kidding...I'm NERVOUS!)
07-28-2011, 05:05 AM   #22
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Wow T! Your gyno doesn't beat about the...I can't say that! I've had zero surgery unless you count a tooth extraction so I'll be scared for you!! Good luck tomorrow! I know you'll be back on as soon as you can
07-28-2011, 08:50 AM   #23
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Wow T! Your gyno doesn't beat about the...
leave it to you Dex !

No he doesn't, but this was quite surprising to me!
I guess I don't have to worry about trying to get Gab's surgeon anymore...at least right now. I trust this doctor tho, as he's the one that did my hysterectomy and took great care of me...that's the only reason I agreed to let him cut on me. (that and he wouldn't let me leave the office again until I agreed !)
07-28-2011, 02:33 PM   #24
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Oh boy....pre-op done and I am officially more nervous!

I thought I looked pretty good today...showered, dressed pretty nice, a little make up...guess not! LOL I guess it's bad when the doctor and 2 different nurses tell you to go home and take more pain meds and go to bed ! Then the phlebotomist says she can always tell by someones veins how they are feeling..then she says...you've really been through it lately haven't you? your veins are terrible and you look rough ! Geez ! thanks folks !
Oh well...tomorrow can't come too soon as far as I'm concerned. Things are getting worse quickly and I am just hoping with everything I have that I have some answers tomorrow (and a little relief wouldn't hurt either!)

On a better note...Gabrielle went with me today. She is leaving for college soon and enrolled in the pre-med program. She absolutely loves watching surgeries on you-tube, etc. So, she asked my doctor if he would let her watch my surgery tomorrow LOL. Of course he told her no but he would give her pictures at least. Then he said, I'll tell ya what...come in and talk to me and I will let you follow me all day whenever you want, AND I will let you watch someone else's surgery, just not your moms !! The smile that came across her face was priceless ! She is beyond excited..her little heart was racing so fast !!
This is the perfect end to her summer before she leaves for college...Needless to say she's a happy camper that mom has to have surgery tomorrow!
07-28-2011, 02:47 PM   #25
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Fingers crossed (check), toes crossed (check), legs crossed (checked), arms crossed (check) eyes crossed (check)...getting hard to type now but I will persevere for you T!

Oh mate, I am wishing, hoping and praying that all goes well for you tomorrow and you do indeed get solid answers and much needed and deserved relief.

Now all you really have to worry about is what you may have said to Gabs during her post op recovery that may come back to bite ya on the bum!

That is a fab opportunity for Gabs! When does college start and what is she studying?

Loads of love mate,
Dusty. xxxxxxxx
07-28-2011, 02:47 PM   #26
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Good luck!! Hope all goes extremely well!!!
07-28-2011, 02:51 PM   #27
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Tracy, that is so nice that Gab is so excited about seeing surgery! When I had cable (before I became ill) I used to love watching real live surgery and doctor type shows on the Discovery Health channel. My husband and friends all thought I was a weirdo but I thought that type of stuff was so interesting! Nowadays I'm understandably kind of sick of doctors in general, plus I can't afford cable anymore, so I haven't watched that type of show in awhile and my interest has waned. Good for Gab that she's got that kind of enthusiasm for it in spite of all the doctor visits she's had! We need more future doctors like her.

Wishing you tons of luck for tomorrow! Get lots of rest tonight, try not to be too nervous (I'm sure that's easier said than done), and I hope you get some answers and relief out of all this! Please update us when you are able to, will be thinking happy thoughts for you tomorrow.
07-28-2011, 03:03 PM   #28
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She is studying (basic) pre-med to begin. She's not sure yet which field of medicine she wants to be in, but she would love to be a surgeon! We will see where her health takes her, and what it allows her to physically handle...however, that's not saying we/she ever lets the thought of bad health stop her from going full force after her dreams !!
She leaves for university on August 17th Oh how I'm going to miss her beautiful face everyday! Good thing I bought us both new Macbook Pro's recently and they have webcams pre-installed ! I will stalk her to death!

thank you so much for the wishes of luck! I will definitely update as soon as I can...this is like my second family here ! Truly...the support here is nothing short of amazing ! You're all so awesome !!

p.s....Cat...they've got some really good, gruesome videos on you tube ! who needs cable anyhow!
07-28-2011, 04:02 PM   #29
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Squillions of good luck wishes from me for tomorrow!!!
07-28-2011, 04:21 PM   #30
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She is studying (basic) pre-med to begin. She's not sure yet which field of medicine she wants to be in, but she would love to be a surgeon! We will see where her health takes her, and what it allows her to physically handle...however, that's not saying we/she ever lets the thought of bad health stop her from going full force after her dreams !!
She leaves for university on August 17th Oh how I'm going to miss her beautiful face everyday! Good thing I bought us both new Macbook Pro's recently and they have webcams pre-installed ! I will stalk her to death!
Aww, good on her. Godammit, that girl deserves to go wherever her dreams take her!

Apron strings T!!! A clean cut now just like a surgeon! Of course I can preach that to you because that is exactly what I did......NOT!

Love ya mate,
Dusty. xxxxxxxx
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