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I don't know what to do...need advice.
      #77660 - 06/09/04 02:32 PM
Vicam

Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada

Hello all,

I just spoke with the receptionist at my GIs office who told me that she believes that my colonoscopy came back normal. I have to wait for the follow-up with my family doc, but she said as she recalled there were no abnormalities.

As screwed up as I'm sure this might sound, I'm upset by this because now I'm back at square one. Even my doc doesn't seem to think it's just IBS because the symptoms have been so severe. 40lb weightloss, no food seems to be ok, I pretty much live off of rice, bread, potatoes (and just recently angel food cake). I've adhered to the diet strictly with absolutely no cheating since March with zero improvement and have tried SFS, herbal teas, everything and none of it makes a difference. Doesn't make it worse but doesn't make it better.

Plus, I've had problems with incontinence, pain so severe that I'm unable to move and none of the medications I've been on have helped. I've tried anti-spasmodics, Modulon, Dicetel, Ativan, Buscapan, nothing is helping.

So now I'm really worried, because if there wasn't anything on the colonoscopy I don't know what to do. I did have that ultrasound that showed some abnormalities of the gall bladder, which from what I've read can cause D and gas and bloating and pain, but I've been unable to get a doctor to examine the ultrasound and give me any advice!

I'm worried about my job, because although they've been great about my sick days, they also knew I was having this test and I think assumed that once I got the results I would get treatment and start to get better, because I've been missing almost 1 day every week. And now I don't think I'm going to have any treatment options coming my way.

Anyone with any advice would be greatly appreciated. Aside from my gallbladder, I can't think of what else this could be...does everything think it could be IBS despite having no changes with all the dietary/lifestyle changes I've undergone?

Sorry this is so long, I'm just frustrated.

Thanks,
Kelly

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Re: I don't know what to do...need advice. new
      #77669 - 06/09/04 03:00 PM
barbie

Reged: 04/22/04
Posts: 2435
Loc: Texas

Hi Kelly,

Sorry you are having a rough time. I know it always feels better to find something wrong so you can "fix it". Have you had upper GI tests done? If not, that might be a good idea. Could it be acid reflux or ulcers?? Also, since your gallbladder showed up abnormal, that certainly could be causing you problems. Hopefully your doc will pursue more about that.
The incontinence, I can't help you with, sorry.
I'm sure you have been to doc about it because you mentioned meds you were taking. I do know they mention one on TV but I forgot the name.

Keep after it and I'm sure you will find out what is wrong.I know it can be frustrating.

Good luck
Barbie

--------------------


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Re: I don't know what to do...need advice. new
      #77672 - 06/09/04 03:08 PM
TammyLaurendi

Reged: 09/16/03
Posts: 500
Loc: Western New York

Have you had your back checked. The incontinence is what triggered the thought to me. My sister has Spinal Stenosis (sp?) and it wasn't diagnosed until she started having bladder and bowel control problems. She too thought she had IBS because she had D all the time but no other symptom. One day her leg collapsed under her while she was carrying her youngest and she went for an MRI and it turned out she has pretty serious back degeration. Also, have you had all the others tests (CA-125 especially)?

Just some thoughts. I'm sorry you are having to live this way right now.

--------------------
Peace,
Tammy

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Hi Tammy new
      #77676 - 06/09/04 03:12 PM
Vicam

Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada

I haven't had my back checked, although that would certainly be a good idea. Do you know if a chiropractor can help with that at all?
Also, I haven't had the CA-125 test...is that the one for cancer? My doc hasn't mentioned it because of my age (I'm only 22) so he doesn't think cancer is an issue right now.

Kelly

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Hi Barbie new
      #77677 - 06/09/04 03:13 PM
Vicam

Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada

I have had upper GI tests done which did show GERD for which I'm on Nexium, but the doctors don't believe that's the reason for my other symptoms. The only other tests I haven't had is that CA-125 blood test and a small bowel follow-thru.

Thanks for your advice,
Kelly

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Re: I don't know what to do...need advice. new
      #77678 - 06/09/04 03:20 PM

Unregistered




Vicam, so sorry you are suffering so much. Regarding your gall bladder, do you have pain under your right rib cage after you eat or any other time. You might consider having it removed. My aunt suffered "D" and it was all due to her gall bladder being bad.

Don't know what to tell you about the incontinence. I suppose that may get a little better once the "D" is under control.

Hang in there, I know it's hard. I'm a grown 31 year old and sometimes I sit down and just cry. I am wishing you the best.

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Re: I don't know what to do...need advice. new
      #77681 - 06/09/04 03:27 PM
LauraSue

Reged: 01/14/04
Posts: 4812
Loc: New York City

Kelly, I'm SO sorry you're going through this! I have no idea what could be going on. It sure seems like if it was IBS it would have responded by now. MAYBE during the follow up with the family doc, he or she will have some suggestions on next steps. I know sometimes I think I've done all the research and have exhausted all the possibilities and then I actually go to a doctor who actually knows exactly what the problem is and can fix it and it's something I've never heard of!! So don't give up five minutes before the miracle.

(The case where it happened to me was piriformis syndrome causing sciatica down my leg. Doc gave me an exercise to do and it's never bothered me since. I was sure it was my chronic bad back disk problems but it wasn't!!)

Hang in there sweetie!

--------------------
Laura
Keep it simple!

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Re: I don't know what to do...need advice. new
      #77700 - 06/09/04 05:24 PM
Little Minnie

Reged: 04/16/04
Posts: 4987
Loc: Minnesota

With your weight loss I am wondering if you were tested for Celiac's. I would think your doctor wouldn't have missed it because it was so popular in the last couple years. They do a blood test for it. I had a follow up yesterday just because I had a borderline positive once and my doc just wanted to be real sure I didn't have it although my symptoms are not in line with it. Weight loss and D are the symptoms and the food you are eating would make Celiac's much worse- it is an intolerance to gluten. Anyway just a thought-Good luck!

--------------------
IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!

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Re: I don't know what to do...need advice. new
      #77707 - 06/09/04 05:32 PM
Kimmy

Reged: 06/02/04
Posts: 76
Loc: Upstate New York

So sorry you are having all this trouble and no luck with any treatment. Years ago, before I was diagnosed with IBS, I was prescribed Axid, then Prevacid and finally Nexium for what my then GI Dr. thought might be a mild case of Acid Reflux (I now believe I had IBS even back then). The Axid & Prevacid were fine but Nexium caused me a great deal of abdominal pain and is even listed as a possible side effect of the medication.

As for the testing and not getting any results I know how disappointing that can be. I had been severely sick since January of this year and was finally diagnosed late May. I had many tests with waiting periods in between tests and appointments of three weeks or more. Finally, after the colonoscopy when I was still out of it, my husband told my new GI Dr. just how sick I was and that it was pretty ridiculous to have to suffer so much and wait so long to get appointments & tests. Amazingly I had my last test and was diagnosed and put on Hyoscyamine within a week. My GI Dr. even called me at home to check on me.

My point is that I may not have gotten across to my Dr. just how sick I was, or maybe hearing it from someone other than the patient helped the Dr. know just how bad the symptoms really are.

Please don't let the Dr.'s office put you off or half answer your questions. Your health is important and so is your job - you deserve firm answers, especially concerning test results.

Good luck.

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Re: Hi Tammy new
      #77878 - 06/10/04 08:49 AM
AstroChick

Reged: 12/30/03
Posts: 1023
Loc: Chicago, IL, USA

Quote:

I haven't had my back checked, although that would certainly be a good idea. Do you know if a chiropractor can help with that at all?
Also, I haven't had the CA-125 test...is that the one for cancer? My doc hasn't mentioned it because of my age (I'm only 22) so he doesn't think cancer is an issue right now.

Kelly




Ahem, I do have to mention a friend of mine who was diagnosed with ovarian cancer (what CA-125 tests for) at the advanced age of 26. However, the big symptom there is extreme bloating and having to pee a lot. D is not a symptom so far as I know.

BTW, my friend is now 6 years past chemo and is my personal yoga guru.

--AC


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Re: Hi Tammy new
      #78275 - 06/11/04 03:04 PM
LittleFox

Reged: 04/15/04
Posts: 503
Loc: California

I as well as everyone on this board are very sorry for the suffering you are going thorugh right now. I send all my love, hope and wishes to you.
For your own peace of mind and perhaps an end to this nightmare, have your doc give you the tests! He can not actually say what your problem is without tests being done. You should not be suffering the way you are. Get the tests done asap - all tests whether he thinks they are needed or not. You need to know why you are going through this agony, not your doc. I deeply do not care for docs that given "educate guesses" instead of tests. Be good to you Tammy, find out what is going on.

All my good karma to you.

Lene

--------------------
God never promised life would be easy, but he did promise to provide a way out!

Edited by Lene (06/11/04 03:08 PM)

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My heart goes out to you and here's part of my story new
      #78276 - 06/11/04 03:33 PM

Unregistered




I'm so sorry that you aren't doing well. My heart goes out to you cause i've been there myself.

I know the frustration of the tests and then turning around instead of being happy nothing is there you're more depressed because you where hoping for an answer and an end instead of more questions.

I'm very sure that your stress level is a contributing to the attacks and pain. I know i've been there and have wanted to die.

My IBS when I first had it was horrible. I ended up not eating and getting sick on water. WATER!!!! It was the only thing I ended up taking because I was getting sick on everything and it didn't help.

A couple of thoughts of mine are that you could try Beano for help with some of the pain. And have phayzne after every meal and at bed time. I find gas is a major contributor to pain and then the pain scares us and we end up with more pain and D. I found that fennel helps but not as much as doing this.

Remember hormones near your period will aggrivate your IBS and if you find this is happening you may want to talk to your doctor about a continous use of birth control. I had to stop periods for a couple of years because it aggrivated my IBS so badly.

There is no substitue for a SFS that it really does help your IBS systems. There are lot of different thoughts out there about IBS and diets that we can't handle fat, dairy products, and sometimes an ability to properly absorb carbs. (Part of the reason I recommend Beano).

I do want to say if you don't go to someone to meditate or are not in a group I would strongly suggest you go. I find that stress is the major factor for IBS and sometimes doing everything else right helps symptoms but not like finding relaxation techniques also such as yoga. I found I was so stressed going to work that I went on UI for awhile for stress leave. My work appreciated that more then me always saying I was sick and having to leave. I hope an option like that is open to you. I think finally we get so beaten down and stressed that's it's hard to stay positive or see how we can live normal lifes. We can but we can't until we put all the things together such as our diet, execrise, and most important getting rid of our stress.

I find when i'm really getting down that I have a talk with my dad. He's dead so I really don't hear anything back but it's great to me to think someone is listen and I do believe there is and whoever is out there is slowly bringing me things to help. When i'm ready to give up on everything I ask that who ever is out there and can hear me to please bring me the next step I need to get better. I always find that one comes when I ask. Not a cure but the next part I need to help me get healthier.

I don't think there are many people who have had IBS worse that I have. Not to be rude but it was so bad I lost a lot of weight at once and was constantly sick and became so scared that I was afraid to leave my house and the thought of leaving it would make me sick for day. To go to work everyday I was taking 12 immodium a day and still getting sick the next morning trying to go to work. I had shut myself off from the world and was so stressed and resentful that this was my life and I was in my early 20's.

I hope by sharing this and telling you somethings that helped me that it would help you and others also. I know exactly what you are going through and feeling and believe me I know that you think that you'll never really get better and just think it's almost a fairy tale that you make up but it does get better and that alone should hopefully help you start to relax more and make some change for you.

If I can help you anymore feel free to e-mail me. I would love to help in any way I can though i'm not always on the board I check my e-mail often.



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Re: I don't know what to do...need advice. new
      #79409 - 06/15/04 11:26 AM
KELLOGG

Reged: 06/11/04
Posts: 5
Loc: ILLINOIS

Your problems are exactly like mine were. I lost over 40 lbs due to being unable to eat because it was so painful. All my tests came back "OK" and I too wanted to cry everytime they said nothing was wrong. Dr. #6 thought I might have endometriosis. She recommended me to Dr. #7, a gynocologist. After once again telling my story, she decided to do a laproscopy. While I had slight endometriosis, I had a ton of scar tissue wrapped around my intestines and it had even connected my colon to my stomach. I am no longer in cronic, sever pain, but I still have not been able to eat again. I am trying Heather's plan but it has only been a day or two so its too soon to tell if it will help. But try a gynocologist if you havent yet.

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Thanks Kellogg! new
      #79414 - 06/15/04 11:29 AM
Vicam

Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada

Hello,
I actually do have endometriosis, diagnosed about 3 years ago by lap, and at that time it was pretty severe but confined to only the uterus, fallopian tubes and ovaries.

I've been kicking around the idea that maybe I should have another lap, because it may have spread to the intestinal area, and I think that may be something I'll have to do.

Did they remove some of your lesions? Is that what has made you feel a bit better?

Kelly

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Re: I don't know what to do...need advice. new
      #79424 - 06/15/04 11:44 AM
banks

Reged: 06/15/04
Posts: 25
Loc: Netherlands

Hey there,

I just read your post- wow, it sounds like your having a really tough time. I can't say that I feel as bad as you do, but I certainly can understand the frustration. 2 weeks ago I finally went to the doctor to see what was wrong with me. He poked around and told me that I have IBS, and that I should go take a blood test. I got the blood test results yesterday, he told me that there is nothing wrong with me but that I just have IBS. How he knew this w/o there being anything on the test I don't know, but I had suspected IBS for a while now.

I can sympathize with the pain- there are days (like today) where I feel like I would just like to crawl under a rock and disappear! Its really hard having to figure out what will and will not make me feel this way and what I can 'safely' eat.

All I can really say is hang in there, have you heard of the hypnotherapy? Apparently its supposed to be really helpful. I am considering giving this a try after my summer break.

Good luck!

Banks

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Re: Thanks Kellogg! new
      #79851 - 06/16/04 07:10 AM
KELLOGG

Reged: 06/11/04
Posts: 5
Loc: ILLINOIS

She fried my insides with a lazer. She removed all tracts of endrometriosis and lazered all the scar tissue. While the first few days were extremely painful, once it was healed, the pain was gone. My scar tissue was caused by having my kids, 2, by c-section. Even though I still have not been able to eat much solid food, I am so glad I had it done cuz at least the constant severe pain is gone. So I certainly recommend you get another opinion about laproscopic lazer surgery.

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