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GOOD GRIEF: laparoscopy now?
      #14682 - 07/23/03 11:05 AM
ecmmbm

Reged: 02/23/03
Posts: 1622
Loc: North Carolina

I had my OB-GYN appt today. He thinks the findings of the GI's Ct scan could be one of 2 things, get this! Either: pelvic congestion syndrome, basically the veins around my ovaries are too full from havng 3 babies and have not returned to normal, causes pain but not dangerous. OR... given my IBS symptoms and the suddenness of how much worse they've gotten over the past year, and since I took clomid to achieve my pregnancies, he suggests we do a laparoscopy now to rule out ovarian cancer. Good night! I said, wouldn't you have felt something in the physical exam or something have shown up in the cat scan? He said no, it is very hard to detect in early stages. He said it was up to me but if it were him he would rule it out now, I have enough red flags to warrant checking it, even though I'm young and therefor an unlikelier candidate and although the IBS and pelvic congestion thing combined could explain my symptoms and their findings thus far.

I know it seems nuts to not want to have a test done when a Dr looks you in the face and says the "c" word, but I'm done with this! I don't want any more tests to just "rule out" and come to the same conclusion all over again. What else are they going to do, turn me inside out to get a better look?

I'm venting now, I admit that. I don't have time, it was hard enough to get a sitter just to go to my appt this morning, and every time I have one of these tests it's an all day event by the time the whole thing is said and done.

Well, has anyone else had something similar to this brought up? I wish if you had IBS then God would somehow send you a telegram that says, "There are tons of other diseases and disorders that could look just like what you're going through, but you don't have any of those, you have IBS". Cause it seems you could spend your whole life ruling stuff out???

Sheesh, thanks for letting me vent.

--------------------
Take care,
Michelle
...the greatest of these is LOVE. (I Cor 13)


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Re: GOOD GRIEF: laparoscopy now? new
      #14685 - 07/23/03 11:19 AM
Snow for Sarala

Reged: 03/12/03
Posts: 5430
Loc: West Coast, USA

I AM SO SORRY!!!!!!!!!!!!!!! *hugs*

This is SO unfair to you! It's frustrating to see someone so special in so much pain.

I think you should get it rules out just to be safe. Throw an "I'm having another test done" party at your house with your friends to make the event less stressful. (I read about this in Prevetion mag...it sounded like a great idea to me!)

I'm also sick of having tests done--and having docs be unsupportive! I am still seeking a complete diagnosis. Just remember, G-d doesn't give us what we can't handle! He must think you're super special with all the struggles He gives you!

You're very strong! I know that whatever comes your way, you're gonna be just fine! Everything happens for a reason...and with your strong faith you know that well! I know you will grow from these experiences--and your family learns so much from this! They see you dealing with these trials in a positive way--and this will also help make their faith stronger too!

I wish I had something more concrete to say to help you--like a complete diagnosis! I believ you will get one. Just keep being patient, keep posting on the board, and keep your wonderful attitude! We love you Michelle! Good luck, and keep us posted! Thanks for venting with us!

*big hugs*

Ruchie

--------------------
Formerly known as Ruchie

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Re: GOOD GRIEF: laparoscopy now? new
      #14687 - 07/23/03 11:51 AM
BL

Reged: 06/01/03
Posts: 3522


Michelle,

I'm so sorry you're having to go through all this. I can just feel your frustration. It is maddening to have all these tests done----the time and the money spent---and then the doctor come to the same conclusion, IBS. I've only had two tests done, but even with insurance, I will be paying a lot out of pocket. When the bills came in the other day, my husband say, "Gosh, I didn't realize it was going to be this much" and it made me feel so guilty. I feel like my entire family now thinks all this is just "in my head" because the tests did not point to anything wrong. Everyone keeps telling me I just need to relax. If it were only that easy!

I wish I could advise you on what to do. Unfortunately, you're the only one who can make that decision. It's your body and you have to decide if it's worth it or not to pursue this further.

Don't ever feel bad about venting your anger on us---we're the only ones who can really understand what you are going through. I just wish there was something I could do to help you. I wish you were on the same side of Charlotte that I am because I would be happy to babysit your little ones while you go to the doctor. Please keep that in mind. In the meantime, I will pray that God gives you the strength to deal with this. And please vent again, if it makes you feel better! Hang in there!


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Re: GOOD GRIEF: laparoscopy now? new
      #14693 - 07/23/03 01:06 PM
BarbaraS

Reged: 02/12/03
Posts: 1939
Loc: Wisconsin

Ooooh Michelle I'm so sorry to read about what the doc. said. I totally understand not wanting more tests, because of the fear nothing will show up.
Don't forget the last time you had a test done something did show up and that resulted in your doctor visit today. Personally I think you should have the test done and pray that God will bring someone along to watch your little ones.
Blessings,
Barbara

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Re: GOOD GRIEF: laparoscopy now? new
      #14701 - 07/23/03 02:54 PM
2sweeties

Reged: 06/04/03
Posts: 60


My best to you, I know it's hard, but you should get it done. Hopefully this will rule out all the scarry diseases. Keep in mind docs want to be safe, in the end, you will have peace of mind that everything will be all right.

Take care,

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Re: GOOD GRIEF: laparoscopy now? new
      #14705 - 07/23/03 03:17 PM
KinOz

Reged: 02/02/03
Posts: 909
Loc: Brisbane, Australia

Oh my gosh, it never ends does it! You must be feeling so frustrated. And don't worry about venting here. That's what we're all here for and sometimes it does you the world of good to vent.

I'm not sure what to advise you, but if it were me I think I'd have the lap done. I know it probably seems annoying and yet another invasive test to take but you'll probably feel easier if you rule it out. And hey, after that what else can they possibly do to you!

Hugs across the ocean,
Kerrie

--------------------
What lies behind us and what lies before us are tiny matters compared to what lies within us.


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Re: GOOD GRIEF: laparoscopy now? new
      #14729 - 07/23/03 09:09 PM
*Melissa*

Reged: 02/22/03
Posts: 4508
Loc: ;

Michelle - I'm sorry you keep having a bad run of it lately. Buuuttt - I think you should go for it. You never know, and it's better to be safe than sorry.

And feel free to vent any time....that's what we're here for.

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Re: GOOD GRIEF: laparoscopy now?-beaglelover new
      #14731 - 07/23/03 09:17 PM
*Melissa*

Reged: 02/22/03
Posts: 4508
Loc: ;

Have you explained to your family that they don't have a test that comes back positive for IBS - that it has to be ruled out, that it's not "in your head"? If so, I'm sure they understand. And if not, explain it again. I think sometimes it's hard for the non-IBSers to understand, because they haven't gone through it. So, sometimes it takes repetition to help it sink it - at least I know it does with my friends & family. But, they love me and I just patiently re-explain again. I think a little more sticks each time around.

And yeah, those bills are killer. But, it's for a good cause - your health. I'm sure you could be spending it on worse things. Please don't feel guilty.

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Re: Going to do it new
      #14770 - 07/24/03 08:43 AM
ecmmbm

Reged: 02/23/03
Posts: 1622
Loc: North Carolina

Thanks for letting me rant and rave. I'm going to get the laparoscopy, which is actually "exploratory surgery", I've since learned, not just a test. But there are reasons to rule out ovarian cancer so now we'll check that off the list, too, and come back to IBS again. For heaven's sake! Now I've scared my husband half to death, what a mess this has turned in to, I didn't mean for any of this to go this far! But the Lord is in control, I didn't pursue any of these tests, and each one has pointed us to SOMETHING... well, thanks for letting me vent, like I said, it is frustrating but necessary.

--------------------
Take care,
Michelle
...the greatest of these is LOVE. (I Cor 13)


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Re: Going to do it new
      #14772 - 07/24/03 09:30 AM
busymom

Reged: 06/30/03
Posts: 90
Loc: Michigan

Let us know when the surgery is going to be so we can pray for you. I am so glad you have decided to have this test since other lab results are what led your doctor to recommend it. The best outcome would be that they find nothing. It would be a cause for rejoicing if there is no cancer, not just a "Good grief, it IS IBS." IBS is a relief compared to cancer. Many young women get ovarian cancer, but don't have the proper tests because they don't think they could get it because they're young. You have all your sweet kids to consider, and they need a cancer-free mommy. Thanks be to God when the tests we go through come back negative! The Lord will enable you to go through yet another test. "I can do all things through Christ who strengthens me."

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Re: Going to do it new
      #14780 - 07/24/03 09:51 AM
Lana_Marie

Reged: 01/31/03
Posts: 1968
Loc: Saskatchewan. Canada

Hi Michelle,

My gosh you are having a tough time...but honestly when it comes to the possibility of cancer one should really get the necessary tests done.

I have known alot of people lately who have been diagnosed with cancer and it's scary how fast it spreads because they never knew it was there.

You are lucky enough to have a jump start on it - you will have the tests and be able to stop it before it worsens.

And if's it's nothing well then it just helps you (and now the rest of us) realize that IBS isn't so bad after all (compared to cancer)

My thoughts are with you and your family. I hope nothing but the best wishes for you.




--------------------
Lana_Marie
Proud Mommy to Bentley Taylor
Born May 12, 2004 9lbs, 3oz



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Re: GOOD GRIEF: laparoscopy now? new
      #14821 - 07/24/03 03:04 PM
HeatherAdministrator

Reged: 12/09/02
Posts: 7799
Loc: Seattle, WA

Hi - It might help for your family to know that there is something wrong in people who have IBS, they just don't have a standard diagnostic test to show this. But, there are actually tests that show the physical difference between IBS and non-IBS folks. One of them is a brain scan that shows how IBS affects the nervous system of the gut, and the gut's communication with the brain, following a meal. There's a great picture of this here web page

Just scroll down the page till you see the bright blue graphs - you can print them out to show your family ("see!! there is something wrong with me!").

- H



--------------------
Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!

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Re: GOOD GRIEF: laparoscopy now? new
      #14834 - 07/24/03 04:16 PM
*Melissa*

Reged: 02/22/03
Posts: 4508
Loc: ;

Heather - that's so cool! I never realized you had the graphs online.

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Heather that is really cool! NT new
      #14835 - 07/24/03 04:29 PM
BarbaraS

Reged: 02/12/03
Posts: 1939
Loc: Wisconsin



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Re: Going to do it new
      #14836 - 07/24/03 04:30 PM
BarbaraS

Reged: 02/12/03
Posts: 1939
Loc: Wisconsin

Good for you Michelle. It is always to be safe than sorry and your three kids need you around for along time.
I think we all now need to start praying for your husband's sanity!

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Re: Going to do it new
      #14837 - 07/24/03 04:41 PM
BL

Reged: 06/01/03
Posts: 3522


Michelle,
I'm glad you're going to have the surgery to see what's going on. There must be some reason the doctor wants to check things out. I hope it is nothing serious. Please let us know when you are having it done so we can be praying for you. Hugs to you!

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Re: Good on you, Michelle! new
      #14845 - 07/24/03 07:20 PM
KinOz

Reged: 02/02/03
Posts: 909
Loc: Brisbane, Australia

Well done for finding that extra strength, I think you'll be glad you did. I'll be thinking of you and wishing you all the best.

Kerrie

--------------------
What lies behind us and what lies before us are tiny matters compared to what lies within us.


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Re: Going to do it new
      #14851 - 07/24/03 07:41 PM
KaybeeC

Reged: 03/14/03
Posts: 241
Loc: Ohio

Hi, dear Michelle!

So sorry about this new wrinkle! Having just been down the cancer road myself, very unexpectedly, I can imagine a bit how you feel. Before I go any further, I'd just like to encourage you with this little statistic: as I understand it, fewer than 20% of women who undergo exploratory surgery are diagnosed with ovarian cancer - and most women who have the surgery have more alarming symptoms than you have (fluid in the pelvic region, increased white cell count, etc). Also, we know you have a loving Heavenly Father who is also the One Who is able to heal any disease. One of my dearest friends is an ovarian cancer survivor, against all human odds!

Now, would you mind if I asked a few "mom-like" questions? I've been doing health-care research for about twenty years - a purely altruistic endeavor - I don't have any health-care training - but I've learned a few things and that's part of my motivation for asking you these things - not any intent to alarm you or act like a "know-it-all" but just sincere concern, so here goes:

1) Are you having a laparoscopy or laparotomy? The first is minimally invasive, while the second involves a traditional incision which affords the doctor a greater field of vision, as I understand it. 2) Have you had a transvaginal pelvic ultrasound - sometimes called TVS - (it gives the radiologist the closest look at the ovaries without doing surgery - it's done inside and also outside, on top of the tummy - painless every time I've had one); CT scan? or a CA-125 - blood test (not a fool-proof test but combined with the trans-vag ultrasound or CT scan can sometimes be helpful)? ** please forgive me if you've already posted about these things - I should have looked back to see but I just rushed on to reply to you! all of these tests may be irrelevant, based on your particular set of circumstances ** However, all of these tests can sometimes give an oncologist a better idea of what's going on before s/he even gets you to the OR. 3) This brings me to my next question: have you had a second opinion with a board-certified gynecologic oncologist? Has your ob/gyn suggested this? With no disrespect intended toward your ob/gyn, if cancer is even suspected and exploratory surgery is going to be performed, most cancer organizations, like the National Cancer Institute, would probably advise a person to have the testing and any exploratory surgery performed by a surgical oncologist, if at all possible; in this case, a gyn-oncologist. They will generally have the most experience in the surgery and in knowing what they're looking at while they're in there - and just where to take the tissue sample from - they have a good "eye" for what's healthy, what's not, etc., even before the pathology report. Also, if cancer were to be found, a person would normally be treated and followed by an oncologist (either surgical, medical or radiation). So, it can make sense to begin the whole process with the gyn-onco. At the very least, a second opinion from a board-certified gyn-onco might be prudent. (Depending on where you live, you might have to go to a larger city to see one. I live in Cincinnati and we only have four gyn-oncologists, and we're not exactly a small town).

Just purely FYI - and you may already know this - anyone can call 1-800-4CANCER, which is the PDQ database of the National Cancer Institute (part of the National Institutes of Health) and ask for a cancer information booklet about specific cancers - like ovarian cancer. A person can also request a list of medical centers near them with board-certified oncologists or oncology programs (the NCI has divisions - not exactly ratings - that identify cancer treatment programs by their scope of experience and types of cancer treated). Then, within the medical center, a person would identify the oncologists who diagnose and treat the cancer they're concerned about - in your case and mine, it's a gynecologic oncologist.

I have been so blessed through my ordeal: God had already prepared the way for my diagnosis and treatment - He's the One Who prompted me in that still, small voice to ask for the transvaginal ultrasound - a test my former gynecologist did every year. When that revealed an abnormal thickening, I had to rush and find another gyn (my former gyn had taken a new position in another city), and he was very responsive and immediately did an in-office biopsy. I have been very happy with him but I already knew that my former doc would have immediately sent me to the gyn-onco - and I even knew which of the four gyn-oncos he would have recommended! All this was prepared for me in advance! I didn't waste one minute worrying about offending the regular gyn by choosing a gyn-onco to do my surgery - it's my life on the line. I wanted someone who had spent 20 years studying, diagnosing and treating cancer - IF I had it - which I wouldn't know until after.

If you haven't done this already, you can check out some sites on the web about the diagnostic testing for ovarian cancer. A couple of "user-friendly" articles can be found at: womenshealthchannel.com/ovariancancer/diagnosis and lifetimetv.com/shows/strongmed/fact -- uh-oh, I didn't finish writing down the address, but it's Strong Medicine - Ovarian Cancer fact sheet or something like that once you get to the site. These aren't "scholarly" but they are informative.

Well, with all that said, I hope I haven't added to your burden. Feel free to tell me (gently, though!) to "MYOB", and just toss this into the round file! Also, please remember that I'm not trained in medicine - this is very general information, not intended to take the place of professional medical care from your own physician.

I'll be praying for you and your dear husband and children, that God will give you HIS wisdom and fill you with HIS peace - the peace that passes understanding! Keep us posted. Looking forward to a good report!

In Him,
Kaybee C

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Re: GOOD GRIEF: laparoscopy now? new
      #14865 - 07/24/03 11:06 PM
HeatherAdministrator

Reged: 12/09/02
Posts: 7799
Loc: Seattle, WA

Yeah, I love those charts. Can you believe I had to pay for the rights to reproduce those images in anything associated with the First Year - because my publisher wouldn't cough up the lousy $200?! They took the money out of my royalties. Sheesh. What kills me is the people who own the image rights initially wanted that fee to be for a one year term, so I'd have to keep paying them $200 each year the book was published, or my web sites were up...forever. Yeah, right! Like that was gonna happen. Still, I think the charts were worth it, as they give such great visual validation to people. I remember seeing those for the first time and thinking "I KNEW it!!!" It's not in my imagination, and my pediatrician who told me it was can kiss my grits!

Okay, more info than you need to or wanted to know.

- H

--------------------
Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!

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Re: Kaybee - here's the long story new
      #14867 - 07/25/03 03:24 AM
ecmmbm

Reged: 02/23/03
Posts: 1622
Loc: North Carolina

Kaybee,
If I didn't want to talk about this I wouldn't have posted about it. Still, I find it a little eery to be thinking of requesting cancer booklets, I feel like we're nowhere near that stage yet, if he finds something then maybe... does that make sense? I guess that's a form of denial about what he's actually looking for, but there's such a MINUTE chance he will find anything, guess I feel like treating this as a "rule it out" thing until otherwise.

Well, here's the history of the situation:

- last fall and winter, severe increase in IBS symptoms, constantly constipated, lots of pain, lots of bloating, way more than normal. Attributed it to stress (I've had quite a bit of that this last summer, 3rd baby born, 2 weeks later moved to new city where I knew no one, etc). Tried zelnorm with no relief.

-after losing 25 pounds over this, my family Dr sent me to a GI Dr who immediately performed colonoscopy and esophagoendoscopy (know that is spelled wrong). He removed precancerous polyps from my colon, and found gastritis in my stomach.

-In the midst of all this I got Heather's book and started making changes, and feeling some better, but still had trouble and sometimes very severe pain. I told my husband having the babies wasn't that bad! Also, the IBS symptoms had not gone away, I just felt a little more in control of them. I also still had (and still have) very little appetite and attributed that to a borderline eating disorder. I make myself eat well now but still battle the temptation to just not eat, sometimes makes me feel sick to imagine eating something but I do anyway because it's right. Now I wonder if the physical didn't affect the mental, the loss of appetite being REALLLY BIOLOGICAL and the mindset of enjoying the weight loss came after. That's a whole nother bag of worms...

-He did an abdominal CT scan to rule out gallbladder and any obstructions that might be in there. Nothing else GI was found and he said the pain must be colon spasms, prescribed librax to help. I've only taken that a few times, and at night, because it puts me right to sleep.

-CT scan ALSO found "unusual dilation of veins surroundign the ovaries, inconclusive". So he sent me to a Gyno, and said that if the gyno didn't find anything to explain it, that I should have an MRI. That's when I started feeling a little scared, an MRI? Good night!

-Gyno appt was Wednesday, he said CT scan could be explained by something called pelvic congestion syndrome, after having 3 babies in less than 5 years. OR... that my symptoms also warranted a laparoscopy (not the other one you mentioned) to rule out ovarian cancer. His reasons included the sudden increase in IBS symptoms, the unusual ct scan, and the fact that I did do several rounds of clomid (a fertility drug) to achieve my first two pregnancies (3rd one was a lovely SURPRISE, came all on her own!) He did mention that in most cases he'd start with a tranvaginal ultrasound but that I'd already had a CT, and a blood test, but that he didn't trust the results of that and would still want to take a look for himself anyway.

-So here we are, neither the ct scan nor the physical exam showed any mass or enlargement of ovaries, so how on earth could all these IBS symptoms be from that? I don't know. I think it's overkill (for lack of a more appropriate term) but what can I do, I certainly can't ignore this, the Lord has put it before me and I have no choice but to move forward and trust that when it is all over and TURNS OUT TO BE FINE, that He had a reason for making us all go through it. It's hard to believe, I've never been a sickly person, never had a "test" in my life until this, and have barely been to the Dr. Now that's all I do! It's getting pretty old.

Thanks for your suggestions, I don't even know if my gyno is an ocol. gyno, I will ask when they call me to schedule it, should be today or early next week.

Anything else you have to suggest, bring it on, I'm a big girl.

Thanks!

--------------------
Take care,
Michelle
...the greatest of these is LOVE. (I Cor 13)


Edited by ecmmbm (07/25/03 04:49 AM)

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Re: Going to do it new
      #14868 - 07/25/03 04:20 AM
Snow for Sarala

Reged: 03/12/03
Posts: 5430
Loc: West Coast, USA

Michelle,

GOOD FOR YOU!!!!!

You just keep going and doing...no matter what comes your way...you make us so proud! I feel like we're all related here at IBS headquarters...and I'm proud you're a part of our family!

I think you have the made the best decision to get the test/exploratory surgery done...and you've also made the best decision with your attitude!

Please keep venting and posting along the way--and of course let us know how things turn out!

We love you Michelle, and we're rooting for you!

*big hugs*

Ruchie

--------------------
Formerly known as Ruchie

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Re: Going to do it new
      #14871 - 07/25/03 04:38 AM
ecmmbm

Reged: 02/23/03
Posts: 1622
Loc: North Carolina

With cheerleaders like you, how can I not see the bright side?? Thank you so much!!!!

--------------------
Take care,
Michelle
...the greatest of these is LOVE. (I Cor 13)


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Re: Going to do it new
      #14878 - 07/25/03 06:02 AM
lovejoy_22

Reged: 02/21/03
Posts: 309
Loc: Henderson, NC

I am so glad that you are going to have the surgery. I have had laproscopic surgery before. It is not that bad. The only problems I had was that they were actually exploring for a really long time. That caused my recovery time to be longer. I also had to have a biopsy a week after the surgery so I'm sure that didn't help out at all.

Please keep us updated on the date of the surgery and feel free to rant. Trust me we all need to rant at one time or another. I was there a couple of weeks ago. Just trust that it will get better.

Joy

--------------------
lovejoy_22



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