My Updates

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 :ylol:
oh well, I'm sure it will all come out eventually :ylol:
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!
:ghug:

Hi Crohn's Mom...

Wow that is a lot to think about. You are not being silly :yfaint: 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!!!! :ycool:

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!!!

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. :/

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...

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...

Hey T,

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

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, :hug:
Dusty. xxxxxxxx

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..

Tess: Thank you for your kind words and support

Dusty: please thank Matt for not making me feel like a big dummy! :ylol2:

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

hey Crohn's Mom

hey Crohn's Mom good luck with your upper GI scope tomororw let us know what happens and how it goes here is a:hug: also :hang: hope you can get some rest tonight :moon: again :goodluck:

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.

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!!
)

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!!

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. :lol: 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 :lol:
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 :hug::hug:
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 !

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!

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 !

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!!

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!!:hug:

Good luck for Friday!

Dexky said:

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!!

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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

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!):eek2:

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

Wow T! Your gyno doesn't beat about the...

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leave it to you Dex ! :ylol::ylol:

No he doesn't, but this was quite surprising to me! :runaway:
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 !) utahere:

Oh boy....pre-op done and I am officially more nervous! :shifty-t:

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 ! :ylol:
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! :ylol:

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! :eek2: :lol:

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

Loads of love mate, :wub:
Dusty. xxxxxxxx

Good luck!! Hope all goes extremely well!!!

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.

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! :ylol:

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 !! :rosette2::rosette2:

p.s....Cat...they've got some really good, gruesome videos on you tube ! who needs cable anyhow! :hallo3:

Squillions of good luck wishes from me for tomorrow!!!

Crohn's Mom said:

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! :ylol:

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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! :rof:

Love ya mate, :Karl:
Dusty. xxxxxxxx

Will be thinking about you today T!! I can't work with everything crossed but I'm wishing you the best of luck and looking forward to a fabulous success story!!

I hope everything went well today!! Thinking of you!

Surgery is over and I am still kicking
From what I have been told, surgery itself took around 4 hours or so.
I was also told, because I can not remember, that I had a pretty hard time coming out of anesthesia due to the pain. All I really remember is the doctor ket saying, give her more ! over and over. Yikes! I do remember crying about the pain a little, so it must have been back because I can tolerate quite a bit of pain.

So because of this vast amount of pain meds they injected int to me....now i can hardly remember what the dear old doc said to me regarding what he saw in my surgery. I remember enough to know that he said my appendix is now gone and thank god I asked for that because it was a mess, and had been "grumbling" for a very long time, with tons of "lesions"?? around it (or did he say adhesions?) I had the nurse look in the computer but she can't figure out what he said...she seems to think he said lesions.
He also removed/aspirated the cysts and told me that one of them had just ruptured and was leaking inside. I knew my pain had increased yesterday and it wasn't in my head ! And as far as I know...my ovaries are still in there! I'm definitely blaming my roller coaster emotions on the pain meds !!

I also remember him saying that he took some adhesions from my lower pelvic region as well, but said that area wasn't nearly as bad as over on my RLQ.

NOt very informative since I have forgotten what he told me. OH ya, he admitted me as well. This was supposed to be an outpatient surgery, but he said there was no way i was going home last night so they could watch me. I may have to stay another night as well. I can't wait for him to do his rounds so I can pick his brain apart and find out what he knows LOL.

Just remembered....he did say I had twisted bowel but I don't remember on which side, and I also don't remember if he fixed It?? I think it was by the appendix, because one of the nurses was explaining the mesh material that he put in after to try and avoid such severe adhesions in the future ??

Arrghh....damn pain meds have depleted my brain cells! lol

T!!!!! So fab to hear from you hun!!!!!

I'm so glad all has gone well and you are well on your way to recovery. I am sounding a tad morbid if I say I can't wait until I hear all the details! I mean the real ones, not the drug haze ones...

Onward and Upward mate, love ya!
Dusty. xxxxxxxx

If you're morbid, then I am too !:dance:

Good grief, I didn't check my post for any type of errors ! I think I may go back when these meds wear off some and fix that jumbled garbage!:ywow:

Actually, that was surprisingly lucid!! Unlike Dusty, I don't like post surgery pics, so just happy updates for me!

Sorry they're holding you hostage but sounds like number 8(wasn't it?) was successful!

Good Lord, that is some fix list! No wonder you were feeling unwell. I think it should be typed up and framed - with or without pics, as you choose!! Great to hear from you and glad they are watching over you.

Hope you are doing ok , and you don't have to stay in too long.

Oh goodness! What a list! I have had a cyst burst before...it is SO not fun! As for the forgetting...that's totally ok! Whenever doctors tell me everything right after I wake up I have to ask them again. So much to deal with at once!

I hope you get your answers soon and they don't keep ya too long!

Well I pretty much got it all right, even in my drug induced state. LOL
I just spoke with the doc again, and he has released me to go home and rest
He said he will see me in his office next week.
Lot's of time during the 4 hours of surgery separating / removing the adhesions/scar tissue I had. He says I have/had a ton on my bowels and he can't say for sure why, but mentioned "bowel disease", and stated he will be waiting in anticipation for the pathology reports to come in.

So, if the nurses ever bring me my clothes than I can bust outta here !! :loll:

It's looking like I may finally figure out what's been wrong with me for so very long....besides the 8 years or so of chronic appendicitis !
I can definitely already feel a difference in my pain. It's all swollen of course, and I have 4 incisions; one on/in my bellybutton, one on each side of the bellybutton, and one about an inch and a half long across my prior hysterectomy scar. My tummy has been officially named a roadmap! :ylol::ylol: The pain is "different", dare I say better ?? I sure hope so !!

That's a great sign that you already feel better! I really hope those pathology reports finally show what you have been dealing with!

Wow Tracey. You do have a lot going on. I am glad you feel a little better and do hope you improve soon.

Wow! They are letting you out pretty quick. So good to hear you feel a difference already: not surprised with all that goin on inside. Rest up well and don't overdo it at home. Nag! Nag! Lol. Xxx

It's good to hear from you Tracy. It sounds as if your surgery was successful. Hopefully you will have the answers to what was making you so sick. I'm glad to hear that you are feeling better. Rest up sweetie! Hugs to you.

Enjoy being back home and fingers crossed multiple times ( now resembling a hair plait) that this significantly improves your pain forever.

Hey T!

Be sure and look after numero uno! That means you!

I am so hoping this leads to some very solid answers for you hun.

Love ya mate, :hug:
Dusty. xxxxxxxx

Thanks everyone!
I am wishing I had a clone of myself right now !
I think I just realized I am not as young as I used to be..
woke up and it took me a half hour of pain and tears just to get out of my bed to go pee. And I swear the refrigerator moved a couple of miles away while I was asleep...it took forever to get there!
I just took a pain pill and I think this is the longest I've been without any since surgery.
I feel like I've been run over with a mac truck...twice!
Oh god, even my fingers hurt typing this.
Where am I in the middle of the night to take care of me??
the joys of being a mom....:frown:
I made it through tho...praying now the pain meds to kick in quickly !
Ouch, Ouch, Ouch !!

Awww T, I think you are amazing to be doing what you are! A 4 hour abdo surgery and you are already home!

I know being a Mum never stops but please take as easy as you can hun, hell I know you will!

Loads of love, :wub:
Dusty. xxxxxxxx

Aww, missis. Try setting your alarm for the wee small hours to take some pain killers. That way you will not wake up in the morning in agony. It's easier to keep on top of pain if you don't let it get really bad. And put a flask of tea or coffee there so you can have a drink in bed and relax before you get up.

I'll hop over there and move your fridge and dusty can make you a pot roast , strap it to a kangaroo and that's supper sorted !

Dammit T!! Get a cow bell and cash in some mom points!! I know the docs want you up and moving asap but it wouldn't hurt your boys to do a little leg work for ya!!

Glad to hear there's a glimmer of hope in your earlier post...less/different pain and answers on the horizon! Fingers and toes....

I agree with littlemissh ... set an alarm to wake you for your pain meds so you can stsay on top of it. Hope today is better!!

here I sit in my little world thinking I am a very patient person...HA!
My GI office just tried to call, and wouldn't you know it's when I happen to take my 20 minute trip to my kitchen to get myself a cup of coffee and try to move around some. UGH.
And the message the nurse left really bothers me..she only said .. "Hi, this is Dr. R's office calling and we really need to speak to you so please call us back."
That's it!
So of course I called back immediately and the flipping office is closed for the day and the answering service wouldn't put my call through even tho I told them I had literally just missed the nurses call about 30 seconds before!
So now I wait until tomorrow and try not to let my own wandering mind decide what the tests results and biopsies may or may not read.
Argh.
I'm sure I'm a bit "over-stressed" due to still trying to heal from the surgery and all the random weird abdominal pains that come and go with that. :ymad:

Oh T, that's awful! I hate messages like that, how can your thoughts not go into overdrive! ARGH!

I hope more than anything it's nothing worrying hun. My mind shall be in overdrive too so hopefully I can halve the burden!

Thinking of you mate, always, :hug:
Dusty. xxxxxxxx

Why would they call right before they close anyway? That's just annoying. I'm annoyed for you! At least it's not Friday, right? Hope you are feeling alright today.

why can't I eat ??

Every since my surgery Friday I can't eat. As soon as I take one or two bites of ANYTHING the top of my mouth starts to inflame and hurts.
This is so weird...please tell me I'm not the only weirdo this happens to?
Or maybe someone has a suggestion as to why it's happening ? I hope...

I guess it's a good thing that I'm not real hungry either, and still very nauseous, or else I would be even more aggravated then I already am lol.

Could it be from the intubation tube? Perhaps it was up against the roof of your mouth it may have caused some irritation/ulceration? Dunno, maybe, guessing!

Whatever it is I hope it packs its bags and leaves ASAP T!

Thinking of you mate, :Karl:
Dusty. xxxxxxxx

that could of been it Dusty.. I didn't even consider that. I knew my throat has been sore because of that, but it didn't cross my mind about my mouth. It very well could have scratched the top of my mouth. I don't feel any cuts, but it doesn't mean they're not there. And that's a better, more logical, explanation than the things going through my head LOL.
thanks

luv u always,
~T~

I was also thinking that something may happened when they were waking you up and/or removing the tube, does that make sense?

Dusty. xxx

That sucks about the phone call! Hopefully it is nothing too bad! And I hope you get to eat something soon too!

Many hugs to you!!!

How are you feeling now? Did you get to speak with your doctor yet?

Well by the Bloody Hell!!
Where have I been? Mars
Can't believe I've missed all the excitement! lol

Aw Tracy, I'm so happy it all went well and that you're home safe & sound.
Hope that's it for now, 8 ops? God, piss orf and leave her be will ya!
If it's any consolation, my belly's like a map of Wigan too!
Take care and lots of R n R
xxxxxx

I finally got in touch with my GI nurse and all she wanted was to tell me that the doctor wanted me to know that my stool samples were normal! DUH, I could have told them that ! :ymad: When I asked if the biopsy results were in or any of the blood tests she said the doctor will go over those with you in the office...gee thanks !

I go back to my gyn for a follow up on Friday, so hopefully the biopsies from the surgery will be in then. I'm more concerned with those than I am from the upper endoscopy any how.

And, this healing thing at my age is for the birds just so ya know! :rof: I don't like it one little bit, and I spent the entire day in bed yesterday!

For the birds.....what's that then??
Hope you feel better soon and try not to worry too much about your results...easier said than done!

Tracy, good luck on Friday! I hope the doctor is able to give you some useful information! And of course I hope you're feeling much better soon and able to spend some time out of bed. Take care and good luck with the results!

I don't mean to whine and cry, and I know there are so many people much worse off than I am here..but I am just so tired of being sick! I usually just keep it all to myself, which is really probably why I have no diagnosis as of yet. I have a tendency to stop pursuing doctors once I start feeling better.
I had somewhat high hopes that this past surgery would help me in some kind of way. I don't know what I was thinking, or why I bothered to get my hopes up. It seems like the surgery has just exasperated my symptoms even more..I'm so frustrated. I'm completely exhausted all the time, I can't seem to muster up one ounce of energy. The cramping and pain are no better...even the nagging pain where my appendix was is still there. Unless I sit still, or lay in bed, any time I move in the slightest I am reminded that I am no better. I can't eat either because of severe nausea or my stupid mouth keeps inflaming. I'm still running a low grade fever. My joints hurt so badly I feel like that truck that ran over me just decided to park and stay. And I can't stay off the fricken toilet to save my life...that part is actually worse since the surgery, which I didn't think was even a possibility! Argh...I'm cranky, and tired and feeling sorry for myself. sorry...just had to get it out. :ybatty:
Oh how I hope I have some answers from my biopsies tomorrow....Please, please, please let that happen! I deserve a break already!

Feel free to ignore everyone lol I just needed to vent for a moment !

Sorry T!! Hope the bio's tell ya something tomorrow! Vent away and don't think for a minute that we don't know the real reason you've neglected your own health!! She's going pretty good right now so look after yourself for a change!!

Thanks Dex
I'm over the feeling sorry for myself now. I just finished watching this movie Gab rented tonight called "Soul Surfer". Have you seen it ? It's about a girl who surfs and had her arm bitten off by a shark. Her passion for life and surfing kept her from giving up and she continued to surf and win national competitions. That sums it up in short, but the message behind her drive and spirit brought me into reality. She reminded me so much of Gabrielle with her determination and her spirit. Brought tears to my eyes..tears of joy.
Ya, I'm a sap LOL
But, sometimes it's the simple little things in life like a movie, that snaps you back into reality and makes your realize you really don't have it so bad after all. Ya, so I don't feel good...maybe tomorrow I'll feel better. If I don't well...maybe the next day...
Give me a good virtual kick the next time I even think about whinging will ya !

I am glad you are feeling more positive Tracy. Sometimes you just have to say how you feel and realising that people do care about you helps. Don't worry about being a wingebag,you clearly aren't.
As far as your pain goes , it's still very early days. There will be lots if areas where he cut that haven't healed and you are bound to have more pain initially.
Good luck with your results and I hope you start feeling better.

Crohn's Mom said:

Give me a good virtual kick the next time I even think about whinging will ya !

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I might kick ya for saying whinging!!! Americans don't whinge...we whine! And you have every right!!

Hahaha sucked in Dex, not everyone's a redneck!

Awwww T, you aren't whingeing hun...:hug: You're are just saying how it is and how you feel and there's nothing wrong that.

I hope you get solid answers soon mate and some much needed peace and relief.

Love ya mate, :wub:
Dusty. xxxxxxxx

Well where to start...
I just returned from my gyn appointment, thankfully, because he wanted to put me back in the hospital for a day or two. He wanted to admit me and do more blood tests, hydrate me, stool tests, and possibly have someone do a colonoscopy. I said..NO. Maybe that was stupid, but I'm sure you all can relate to how much I hate being in the hospital!
So he sent me home with orders for more lab tests and stool test and made me promise to eat a banana a day (he said he can guarantee my potassium is low w/out a blood test, just by looking at me and my symptoms), and I have to drink some sports drinks, etc. to try and keep hydrated, and if my fever gets over 101 then I must go directly to the hospital. He also thinks I have managed to pick up a C-diff infection (isn't that lovely!!)

The only pathology report that is in was for my appendix, and ... I was right....I definitely had Chronic Appendicitis! At least I know one thing wasn't just "in my head". He had a med student with him today and told her that some people "think" they are sick and they're really not, but when it comes to me I "definitely have something very wrong with me" but he just can't find it. He actually said to her..."I truly believe she has Crohn's disease and I wish to God I had the smarts to figure it out on my own!" Wow! That little bit of validation from him means the world to me! Even if he can't be the one to figure it out, he is the one who cares enough to try!
He gave me the name of his personal GI doctor and highly recommends I get rid of my current one and move on. He said 10 patients could go to a doctor with the exact symptoms, 9 of them get blown off quickly and sent away. It's usually only 1 of them that really needs help and they too get blown off. He said I am that 1 person who really needs their doctor to pay attention but has been blown off by her GI; and even though he enjoys the mental challenge of trying to figure out what that help may be, it's not a gyn issue and half the stuff he is doing for me he is not supposed to be doing.
So for now, I am not allowed to go back to work until at least next Friday when I have to go back to his office again. He basically told me not to be afraid to take my pain meds after I told him I really don't take them and he says "why??". I just don't really care to if I don't need them. But, at least I have them if I do..which is more than I can say for most of the people I feel sorry for on here when they NEED THEM and their doctors won't budge !

So, I still don't have any solid answers, but I'm ok with that today...I was validated and feel like someone (a doctor) actually, truly, cares about me and wants me to get help...and thinks the same as I do that I have CD. My GP doctor also believes that is what I have, but again, he's not qualified to diagnose and sent me to my (idiot) GI. Just knowing that I am not "crazy" or a "hypochondriac" is enough for today...I will take it because it means there is hope still

Thanks again everyone...your continued support means so much to me!

Wow Tracy! I completely understand with the hospital thing...I hate being admitted! And that doctor is so great to say to you that you need help! If a doctor said that to me I think I would cry from happiness lol. The burden of being mixed in the with people that don't need help is so frustrating!

I hope you start to feel better! The possibility of c-diff really sucks.

Wow, sounds like you made some progress! So glad to hear you have a doctor who truly knows and believes that you are legitimately ill, and how great is that referral to his GI! I hope this new GI ends up being as good as your doc says. And good thing you got that appendix out too, sounds like it definitely needed to go! Did they give you anti-biotics or anything for the c diff? I've never had c diff myself (knock on wood) but I've heard people talk about it on the forum and it sounds just miserable. Anyway, take care of yourself and get lots of rest and I hope you're feeling better soon!

No, Cat he didn't prescribe anything for the possible C-diff. Unfortunately I am allergic to Cipro and possibly Flagyl and about 10 other medications, so sometimes with me it's better to take a "wait and see" approach to infections. If my CBC on my blood tests comes back showing infection then I will have no choice but to try some kind of antibiotic.

Just kind of thinking out loud here..and maybe a little outside the box..

I'm wondering, what are the chances that my chronically infected little appendix could have been causing the majority of my symptoms ?
I woke up yesterday and felt soo much better, but didn't want to "accept" that it would last so I just went with it, expecting things to get worse. They really didn't. Then I woke up again today and feeling pretty damn good I must say!
I do still have a little pain, but that is to be expected from a 4 hour surgery I would think. The pain throws me tho, because the major part that is left is exactly where I always said it hurt before...where my appendix would be.
But, the diarrhea has slowed way down! Dare I say...almost had a normal BM yesterday, and have yet to go today (this is a huge blessing for me!).
My low grade fever is almost gone as well..I only had one for about an hour last night.
I am still nauseous, but it doesn't seem as extreme as before. My heartburn is settling, and I would say its from the double dose of Nexium I've been taking, but I'm not very faithful at taking it as I am supposed to be.

I have been constantly trying to find ways to convince myself I DO NOT have CD since about 8 years a go when my GI doc first said he suspected it. So, I could just be doing this to myself again, and repeating my old pattern of "hey, I feel better...I'm all done with doctors!" LOL.
So, anyone have any opinions on this? Do you think it's possible that between removing my chronic appendicitis (it was literally bad for 8 years), and a ton of scar tissue/adhesions, that my "digestive" issues could be on the mend? Just like that ?? Or am I fooling myself again??

I do know one thing for certain...It feels SO good to feel this good for almost 2 whole days straight ! I'll take it !

Hey, Tracy. I dunno but I sure hope it lasts. 8 years sounds like a long time for an appendix to grumble: is that possible?

Hey T,

I think it would be entirely possible to feel so much better following the removal of an inflamed piece of tissue, not to mention having adhesions released.

Scientists now believe that the appendix may have a role in your immune system and gut flora. Maybe you could think of it like your tonsils. You have repeated tonsillitis so you have your tonsils out and no more sore throats, pain, fever. You have a chronic infection of your appendix, that produces symptoms of pain, diarrhoea, nausea, vomiting, lack of appetite, fever, you remove the appendix and the symptoms resolve.

I so hope that this is the case T, that this surgery provides you with answers and much needed relief and peace. I will keep absolutely everything crossed!

:goodluck: May it last a lifetime hun!

Much love, :Karl:
Dusty. xxxxxxxx

ya, It's definitely possible. I had a colonoscopy 8 years ago and the GI doc saw a lot of bleeding around my appendix. He was alarmed and said he thought I had chronic appendicitis and sent me for a CT scan which showed no problems. So then he sent me to a surgeon who in turn ordered a HIDA scan because he insisted it was a referred pain and it was my gallbladder causing the pain. The scan showed that my GB was only functioning at 14% so I had surgery a couple days later to have it removed. I never understood how that all went down at the time, but I know that nagging LRQ pain never went away. I have had several CT scans throughout the years because the pain will get very intense...they show nothing. I'll go on a dose of antibiotics and the pain would lesson, but never go away.
So when my GYN went in to do the laproscopy surgery he said that there was a ton of scar tissue built up all around my appendix, and attached to it, so that is probable the reason why the CT scan wasn't ever picking it up. Then the pathology report just confirmed that it was indeed diseased previously and half dead and withered and very inflamed.
All of the research I have done on this suggests that "chronic appendicitis" in itself may not even be "real", but they're not sure. I now believe it is, even though it is quite strange that it never ruptured in all those years.

Hi Tracy. I truly dont know where I have been when you were going through all of the above!!! I seriously must have been in my own little world. I am so glad you are feeling a little better but I would hope that you dont go back to ignoring/pretending/believing that you are better and shut out any future pain. Also I have a tendency to miss some medication, not because I dont want it but I tend to forget to take it when I feel good. Makes me nervous to think I can do that as I dont want to go back to where I was. I really hope things keep getting better for you and I am really sorry I didn't see this thread to at least wish you good luck. Fingers crossed for you, you deserve a break. Wishing you luck now though :goodluck:

Crohn's Mom said:

I do know one thing for certain...It feels SO good to feel this good for almost 2 whole days straight ! I'll take it !

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Hey T, never sniff a gift fish!! Think like a child!! If you feel well...you are well!! Enjoy it!!!

Thank you so much Goldfish! and, no worries! there are a ton of threads here...we're all bound to get lost in the shuffle ! I really appreciate your kind words and thoughtfulness!

Just thought I would say, I am feeling better and better !
Don't get me wrong...everything is not magically gone. However, I refuse to dwell on it and let it get me down, when so many other things (mainly the extreme pain) are doing wonderfully at disappearing !
I plan to continue my pursuit with the doctors and not let my health go this time, but it will be hard (if I am being honest) to keep it up when I do feel good. I'm just going to make it a point to remind myself that it is NOT normal to spend as much time as I do on the porcelain throne, and it is NOT normal to be nauseous all day with or with out food...and a few other things
I'm just so happy right this minute that the pain has lessoned...it is such a blessing to my mental health! Ahhh! a little freedom!

HOOOray Glad things are on the up:yoshijumpjoy:

I hope you can shake that constant nausea T!! You're right, that ain't normal! I suppose it's all relative, but when you said you were feeling so much better, I assumed you felt well!! Please keep trying to find out what's causing these continuous problems!!

So glad you are feeling a little better. Long may it continue and hopefully further improvement will come along!!
)

Tracy, I'm so glad you're feeling better! I've read so many of your posts re Gabby and your sons and all you've been through with them, it must have been so very difficult to be so worried about your kids, trying to get them better while feeling so badly yourself! :yfrown: You are always so positive and supportive on your posts! You certainly deserve to feel better!!! And I'm so glad it seems that you are feeling a bit better - ENJOY it! :rosette2: Deal with tomorrow's issues, tomorrow! (haha, I'm one to talk! I worry about next year's issues and everything in between! :yfaint: But, I'm trying to learn!)

But, please don't let things slide because you're feeling better!! I do that too... you know, 'oh, i'm feeling better today, maybe it's gone... I'll just wait to see if it comes back... hmm, it's back... maybe it's just a glitch today... ' On top of the already many, many dr apptmts we all have for our kids - who wants to go to ANOTHER dr apptmt?! But, GO!

Here's wishing today is even better than yesterday! :beerchug:

How are you feeling today, Tracy? Still getting better I hope? When do you get your blood test results back? I hope they don't find any c diff!

But, please don't let things slide because you're feeling better!! I do that too... you know, 'oh, i'm feeling better today, maybe it's gone... I'll just wait to see if it comes back... hmm, it's back... maybe it's just a glitch today... ' On top of the already many, many dr apptmts we all have for our kids - who wants to go to ANOTHER dr apptmt?! But, GO!

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That pretty much sums me up in a nutshell ! :ylol:

Cat ~ Thanks, I'm still feeling pretty good.
(Hiding my head as I say this...) I haven't gone for the blood tests yet LOL.
I'm actually going to go get them this afternoon, thanks for the reminder.
Oh I am terrible ! Geez...you would think I would learn! :ylol:
I don't think I have picked up C-diff though...the symptoms just aren't there. I do want to have them done though because he ordered my sed rate to be checked and I am very interested to see what that reads.
I have to run out and take one of the kids to the bank, and the other one shopping for some back to school clothes, so I will stop by the lab and get the bloods drawn.

Well I finally went and had my blood drawn this morning I didn't get a chance to yesterday with all the errands I had to do.
I guess I am still pretty drained and dehydrated because she used the (baby) butterfly needle on me and still had to poke me twice to get a vein...out of my hand! ouch! LOL
She's trying to give me advice and tell me to drink more water...hahah...ya, like I don't try! If my health problems were just that simple to fix life would be grand!
I seriously just wanted to look at her and say something like...hey, do you think if you were on the toilet basically peeing out your butt 10-15 times a day you would stay well hydrated ?? LOL I refrained....

Awwww T....

I'm chuffed to hear that the pain is settling but it sucks about the diarrhoea...


I'm interested about the bloods too!!! Keep us posted!!!

Love ya T...:heart:
Dusty. xxxxxxxx

Ha ha yeah...it is hard to keep drinking to try and keep up with the bad D...I feel like I'm swimming when I really try and keep up!

I hope the blood tests turn out well!

Hey T, I love the new avatar!!! Gabs looks absolutely gorgeous!!!

Dusty. xxx

Thanks Dusty

You know what I love about that picture the most ?
It was taken today! Sick as she is getting ~it just proves how "invisible" this disease is!
And..she looks incredible in that outfit; obviously not letting Ozzie stop her from a thing. I hope other young ladies see that picture and realize how gorgeous they can still look regardless of a bag or not!

lots of luv,
~T~

I love hearing positive news. She is a beautiful person both inside and out. You can just tell.

I swear I can't tell you and Gabs apart!! Especially in these little avatar pics. She's a beauty T!! I don't think anything is going to stop her!!

Good news and bad news I guess:

I went for my follow up appointment with my GI this morning.
Good news is that my stool samples were all normal (which I knew from the phone call)
I still don't know about the blood tests because I forgot to ask, but I am assuming they were fine too or he would have told me otherwise.
My biopsies showed no signs of Celiac disease; however they did show chronic inflammation in my esophagus and stomach, but no pre-cancer he said.
He wants me to try a medicine called Welchol. It's normally used for people with high cholesterol he said, but it's also being used to help with the type of diarrhea that is caused from malabsorbtion of bile acid in people who have had their gall bladder removed.
He said if it helps, then it will be interesting to see if the pain and nausea are helped as well if the diarrhea goes away.
If not...
well that's the bad news.
I have to wait at least a couple more months before he will do any additional testing because of my recent surgery. I seem to be healing very slowly inside, and my abdomen is very very tender still. He doesn't want to mess around with any invasive testing until we know I am healed completely. He said then we may do a colonoscopy again, or that test that sees if your stomach is emptying properly, or some others. I just have to wait tho, unless I get any worse of course.

So that's that. I am on "hold" once again; oh well, whats a person to do right ?

I may go ahead and get a second opinion in the meantime, I just haven't decided yet.

The good news does seem good but hanging around to do more tests is annoying. Maybe a second opinion would be a good idea. It cant hurt surely can it?

Hey T, is the Welchol supposed to help with the inflammation too? Are you still dealing with the nausea?

No it doesn't' treat inflammation Dex and of course, NO he didn't even try to explain to me his theory (if he even has one) on why I have chronic inflammation in the first place.
And yes, the nausea is never ending. Rather than him give me something to help with that until we can get rid of it, I am his guinea pig ...or so it seems.

How long does he want you to try the Welchol before you determine if it is or isn't working? You said you have to wait a few more months for any more testing, but hopefully that doesn't mean that you have to try this drug for a few months? Chronic nausea is horrible, I really hope he isn't expecting you to just deal with it while you are taking the wait-and-see approach!

Wow ! It's been a month since I've updated this
I so wish I could say it's because I'm feeling amazing :shifty:
I'm not tho unfortunately.
Pretty much all the same stuff is happening that was pre-surgery. I had thought that the new left sided pain that sent me running back to doctors was gone, but it has returned the last few days. The right sided pain that I thought all these years was my appendix has lessoned somewhat, but it is now more specific and still there. I can pinpoint the exact spot better now so I guess that's a bonus. The nausea is just awful tho and now that is coupled with a severe migraine that has my brain doing crazy things for 2 weeks now. I can't help but think that the migraine is somehow related.

Anyhow....I DID IT !! I finally switched doctors !! I was so extremely nervous making that initial phone call. I can't explain it...it was like I thought for sure my original GI doc would be sitting right there listening on the phone while I was trying to dump him or something! LOL I know..it's silly...but deciding to finally accept that I AM ill and need someone to listen caused me great anxiety. I am so glad that phone call is over tho! :ylol2: I am going to the doctor that my GYN recommended and goes to himself. I got a rather quick appointment too which surprised me. I go on October 12th @ 8 in the morning
So now I just sit and wait a couple of weeks to see him and hope that he is compassionate and caring and LISTENS and ACTS ! I'm keeping my fingers crossed