feeling defeated.

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closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 8/12/2008 7:35 AM (GMT -7)   
well the official report is in for my colonoscopy. just like they told me Friday they found nothing. so the nurse calls today and guess what they want me to do. they want me to try this medicine they apparently think I've never heard of. I think they called it immodium and I guess it's even available over the counter. *note sarcasm*  rolleyes I didn't even fight her on it. I have no fight left in me. I told her I've tried it and it doesn't really start to work til I take the max dosage and she said she could tell him that, but I told her to just forget it and I'll try again and if it doesn't work I'll call back. she said it's safe to take every single day I guess. what pisses me off beyond belief is the fact that I never even met this doc before my colonoscopy so he had no idea about any of my other symptoms. his report just told him I had a recent change in bowel movements and some rectal bleeding. the stupid nurse practioner I saw didn't mention the rash, the mouth sores, the severity of my bleeding, how long I've had the diarrhea for and the frequency and apparently this doc doesn't care. maybe I'm just jaded when it comes to docs...I don't know. so for now I give up. part of me wants to call back and try to set the record straight, the other part just wants to go back to bed. sad
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, acid reflux, and in the process of being diagnosed with either crohns, colitis, or even lupus...who knows really! the docs sure don't lol. Now possibly even celiacs disease!Lots of tests coming up so hopefully I'll know more soon. Too many meds to list!


closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 8/12/2008 7:52 AM (GMT -7)   
well I called back even though I said I wouldn't. I guess I had a little bit of fight in me, but now it's officially gone. I talked to the nurse again, who didn't even remember talking to me not even 20 min ago. I tried to give her my symptoms and give her an idea how long this was going on and she wouldn't even let me talk. just kept cutting me off. I told her I had never even met the guy before the colonoscopy and she still didn't care. just kept cutting me off and told me she'd tell him the immodium didn't really work for me. so if I wasn't feeling defeated before I definitely am now. she didn't even write down anything I was saying. I honestly want to cry. she didn't even give me a chance to ask her what the doc thought I had. I'm assuming there wasn't a diagnosis on there or else she would've told me. :-(
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, acid reflux, and in the process of being diagnosed with either crohns, colitis, or even lupus...who knows really! the docs sure don't lol. Now possibly even celiacs disease!Lots of tests coming up so hopefully I'll know more soon. Too many meds to list!


mel05
Regular Member


Date Joined Jan 2008
Total Posts : 87
   Posted 8/12/2008 8:22 AM (GMT -7)   
I am very sorry Closure!  I know just how you feel about docs not listening to your symptoms.  It took 2 years for me to be diagnosed!  And I was so frustrated.  All of my tests came back negative, even though I was always severely dehydrated and nothing would work!  Maybe after you get some rest something positive will come out of it.  Maybe the doctor will call you back.  Don't give up!  You know that something is wrong!  I'm keeping you in my thoughts!  good luck and keep us updated!

Diagnosed with crohn's in January 2008! 
Pentasa 1000 mg 4 times a day
Was on topamax for migraines...off now to try to get pregnant
No longer on Nexium...well now i"m back on it! 
On Entocourt for the next 6 weeks to see if I can get out of my flare!
 
I am 27 years old and have been married for 2 1/2 years.  My husband and I are currently going to try to get pregnant.  This is our first month trying, so wish us luck!!


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 8/12/2008 8:29 AM (GMT -7)   
It took over a year and 5 surgeries before I found a doc that would properly diagnose me, so I totally feel your pain! You have to find a better GI than the one you've got. You need one who will sit down with you, LISTEN, and THEN do a scope, and some biopsies, and anything else he deems necessary. You can't rely on one of those "fast-track" scope places with crappy docs! I know it's easier said than done, but find a better GI! For your own sanity as much as for your health.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 8/12/2008 9:30 AM (GMT -7)   
Ah, I'm so sorry, that is just so frustrating. Been there done that. They act like that one test is just gold, and if they don't find anything you MUST be fine. Bologna! I'd probably be looking for another doctor, and maybe asking if the pill capsule test would be a better option for you. They seem to forget that their precious colonoscopy doesn't always reach where we might be having problems.

Good luck, I did the Immodium route for years, because they said IBS, and of course I never was well enough on it.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down again at: 4mg now, Asacol, Questran, Toprol XL (for high blood pressure).


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 8/12/2008 9:50 AM (GMT -7)   
Closure,

I am SO SORRY you have to go through this. SO FRUSTRATING! Maybe they should do a capsule endoscopy? Could your problems be in your small intestine? It took a capsule endoscopy to confirm that I had Crohn's. In the past the disease was pretty active in my large intestine, and the colonoscopy showed that but when they did the capsule endoscopy it showed activity in my small intestines too! They def wouldn't have known this had they not done the capsule endoscopy. So I'm thinking that if your colonoscopy came back "normal" (ARG) that maybe you have lots of activity in your small bowel?

Also, maybe you should go to another doc. This guy sounds like a loser who doesn't care about his patients. ARG!

Take care and please let us know how you are doing!!
turboemma.blogspot.com/


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1184
   Posted 8/12/2008 10:42 AM (GMT -7)   
lilturbo your blog amazing, well done for living your life with a smile.

Closure - ask for a capsule endoscopy or a barium MRI so they can see the small bowel.

Diagnosis: UC Pancolitis or Chrohns Colitis to be confirmed by biopsy.


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 8/12/2008 10:47 AM (GMT -7)   
turbo is right..next doctor...:)
SCD since 01, remission since 01, occasional Arby's breaks :)


love_angels
Regular Member


Date Joined Oct 2006
Total Posts : 46
   Posted 8/12/2008 11:51 AM (GMT -7)   
I agree, get a new GI doc.
Suggestions: Could you get a second opinion? Could you get a referral to, like the Mayo?

closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 8/12/2008 11:53 AM (GMT -7)   
I've been thinking about switching doctor's, but here's my issues. First, there are only 2 practices in my area for colon/rectal. I'm obviously at one so there's only one left. No problem with that, but now I'm paranoid they might be the same way. Second issue...the doc seemed nice during the colonoscopy so maybe it's his ignorant nurse giving off the vibe that he doesn't care. He said during the colonoscopy that he would recommend the endoscopy if nothing showed up so that's what I was expecting...not take immodium and live with it. Maybe their patients are just numbers though and he doesn't remember talking to me? Like I said I couldn't even get a list of my symptoms or questions out with this stupid nurse...she just kept cutting me off. I don't know. I mean I think having diarrhea for over 4 years plus having it become severe for the past 3 months should be a big deal. Especially since I haven't really even been able to leave the house lately. Then there's the bleeding I've had off and on for years which also just recently got worse, but went away in the month it took me to even get my colonoscopy. The first time I went to the ER they wanted me to get a colonoscopy scheduled ASAP. when they called me to see if I scheduled it they, the hospital, called to see if it could be moved up because of how urgent they thought it was...obviously that's not in my chart though. anyway...I guess the rash and mouth sores I've been getting for over 2 years are nothing too. just take immodium and ignore the problems. she even told me maybe if I take the immodium for awhile and I stop it maybe the diarrhea will have gone away. I'm just so fed up.
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, acid reflux, and in the process of being diagnosed with either crohns, colitis, or even lupus...who knows really! the docs sure don't lol. Now possibly even celiacs disease!Lots of tests coming up so hopefully I'll know more soon. Too many meds to list!


closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 8/12/2008 11:55 AM (GMT -7)   
Oh...and like I said she didn't even say I had a condition or anything. All this time I was worried they'd come back with IBS even though I had bleeding, but I didn't even get that much. They treated me like I just had a bad bout of diarrhea.
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, acid reflux, and in the process of being diagnosed with either crohns, colitis, or even lupus...who knows really! the docs sure don't lol. Now possibly even celiacs disease!Lots of tests coming up so hopefully I'll know more soon. Too many meds to list!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1184
   Posted 8/12/2008 12:10 PM (GMT -7)   
If they didn't see any piles on the scope then it is almost certainly Chrohn's or Cealic Disease in my opinion. Obviously it isn't UC as there is no colon involvement. The best thing to do is go to the other practice for a 2nd opinion and take it from there - let them know what you have had and what you need is someone to look at your small bowel.

Diagnosis: UC Pancolitis or Chrohns Colitis to be confirmed by biopsy.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/12/2008 12:15 PM (GMT -7)   
I agree a second opinion is called for. I would request your records from this current GI and take them with you to the new one. I agree with some of the above also, you should request a pill cam, that will show more of the small intestine. I know some have finally gotten a diagnosis after the pill cam. Good luck!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 8/12/2008 12:35 PM (GMT -7)   
I'm so sorry you are going through this. I think we are trying to give you some of our fight, so please use it to get a second opinion. An endoscopy is a good start, but you should also try for a capsule endoscopy, it can see further in and possibly find out what is going on. There are also other diagnostic tests that can be beneficial if those fail. A colonoscopy isn't the only thing out there. Please keep looking for an answer. I went 10 years undiagnosed because the doctor told me I was lactose intolerant, and I will never know how much damage that did to me. I do know I ended up with 3 resections in very quick succession after finally being diagnosed correctly.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


jacenta
Regular Member


Date Joined Nov 2006
Total Posts : 47
   Posted 8/12/2008 1:53 PM (GMT -7)   
i think you should make an appointment and talk to this doctor personally instead of his receptionist. and request a capsule endoscopy. to me it sounds very unprofessional of a doctor not to recommend something else giving the symptoms u have. or ask to go for a second opinion. good luck! HUGS

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 8/12/2008 2:26 PM (GMT -7)   
Why see a colo-rectal surgeon? Why not see a gastroenterologist instead. I would be finding me a good gastro ASAP. If it will make you feel better, call and make an appt and go in and see this guy and tell him everything you have told us. You are going to have to get over being mad and take care of business instead of dwelling on what some idiot nurse told you. Remember, you are the one in charge of your health, not some nurse. Sitting and fuming and doing nothing will not get you anywhere except put your gut in an uproar. Good luck. Susie


closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 8/12/2008 4:41 PM (GMT -7)   
I guess my dad called the doctor's office since I was so upset. That made me mad too, but that's other issues not for here. So I guess on the 26th this month I will get a meeting with the doc. So I'll wait and see what happens then.

They didn't find any piles or hemorroids with the colonoscopy. Just one little polyp. Nothing else showed up at all.

Thank you all for your support and sending your strength. I appreciate it all. I have to go now, but will be back later. *hugs*
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, acid reflux, and in the process of being diagnosed with either crohns, colitis, or even lupus...who knows really! the docs sure don't lol. Now possibly even celiacs disease!Lots of tests coming up so hopefully I'll know more soon. Too many meds to list!


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/12/2008 5:03 PM (GMT -7)   
You are going through quite a lot at the moment. Make a list of eveything you have gone through symptom wise for your appointment and thrust that under the doctors nose and dont leave until he has addressed your concerns. If all else fails do get a second opinion, you shouldnt have to suffer so.
Prayers and hugs for you closure - Jo

rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 8/12/2008 9:19 PM (GMT -7)   
I know how frustrating this is for you. It took me 10 years and several doctors. I'm still not diagnosed with "evidence" but at least I found a gi willing to try. The last one I had told me "you most likely have some form of IBD. Let me do a colonoscopy and see what that shows" So I did and he said it was normal and I had IBS, even though he admitted it is somewhat unusual for someone my age (in my 50's at the time) to develop IBS. I really believe he just wanted to do the colonoscopy. At this point I gave up for 4 years and I got worse. I hold him responsible for that. Finally I stopped being mad and disgusted with doctors and like straydog said, focused on taking care of business. I got a referral to another gi, told him my story, and then just asked him "would it hurt to just try a trial of medication to see what happens?" I have learned to ask for what I want. I also think you should meet with him again and ask for an explanation.

Another thing, a normal appearing colon does not rule out crohn's disease. Biopsies must be taken but even that doesn't rule it out because of the spotty nature of the disease. When it looks normal it is difficult to hit the right spots. Even the idiot gi doctor said that. I had said to him "I had a CT SCan done several years ago and I thought that ruled out Crohns' but another doctor told me recently that only a biopsy rules it out" and he said "and even that doesn't always do it. You can have a negative biopsy and then it explodes on you" You can see why I was hopeful with this guy.

Keep fighting. Someone has to give you an explanation for bleeding if there are no obvious causes.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin,levothyroxine, sertraline, lyrica, methotrexate, down to 2.5mg prednisone and miserable.     


closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 8/13/2008 12:32 AM (GMT -7)   
thanks again for the encouragment and advice. you have no idea how much it has helped me to come here and see people who know what I'm going through and understand completely. I don't know how many of you also suffer from mental issues, but today totally screwed me up. I mean I think I had a right to be upset with that stupid nurse and the whole situation. I've just been in a depressive phase in my bipolar lately and this along with all the other crap in my life pushed me over the edge. Here I am over 12 hours later and I'm still dwelling on things and still stressed/depressed. because of my mood I totally ruined the day for my boyfriend which of course has made me feel worse. it's like a never ending cycle. with being sick all the time physically and mentally, my family drama, money troubles...the list goes on...I've gotten into quite a funk. I would stay in bed all day if I could...unfortunately my butt's attached to that toliet so I can't mope in bed for long. usually if I just took a day to soak everything in and stuff I would get over it a lot easier. but with being sick with these stomach problems and the fact that I have so much stuff to take care of at the moment I have to push things aside and eventually I just lose it.

anyway I'll stop rambling. I'm going to try and be optimistic about my appt at the end of the month and assume it was just a bad nurse I got today. if I'm still in the frame of mind I was in today and the doc blows me off I don't know what I'll do. I don't know how willing I'll be to keep going with this illness. meaning I don't know if I'll be able to fight with another doc to fix me. I'd probably have to go through the whole colonoscopy thing again plus whatever else they might want to do to me and I'm struggling now to keep up. I'm just trying to have the strength to fight because I know there's something wrong...something immodium is not going to fix. if anything that crap will just make it worse. I don't know who I told today, but if I start bleeding again I'm going to take a picture of the toliet. the ER doc saw the blood by examining me when it was at it's worse, but apparently that's not good enough. I have pics of the rash I keep getting, but when I met with the physician's assistant to schedule my colonoscopy he wasn't interested in them. I offered to show him and he said he was just more concerned about the diarrhea and bleeding. then the only thing he writes on that stupid note for my actual doc who I only met the day of the colonoscopy..."recent change in bowel movement, some rectal bleeding." what about the mouth sores, the rash, how long the diarrhea and bleeding have been going on and the severity, the back pain, joint pain, etc.

I'm just so frustrated. sometimes I feel they see my bipolar or the meds I'm on and automatically think mental case. oh well. now I'm done rambling.
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, acid reflux, and in the process of being diagnosed with either crohns, colitis, or even lupus...who knows really! the docs sure don't lol. Now possibly even celiacs disease!Lots of tests coming up so hopefully I'll know more soon. Too many meds to list!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1184
   Posted 8/13/2008 1:35 AM (GMT -7)   
The more I read these forums the more I think the single biggest cause of IBD is stress and anxiety.

Diagnosis Oct 07 and then Aug 08: Patchy Ulcerative Pancolitis or Chrohn's Colitis to be confirmed after biopsy.
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate) for 30 days


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/13/2008 6:38 AM (GMT -7)   
I do not believe if you got a 2nd opinion you would have to re-do the c-scope. Just get a copy of your records and take them to a new doc. Closure you really need to stay strong and fight! No one can help you get the care you need but you. Continue to fight and try to get answers, don't let a few ignorant nurses or doctors stop you from getting the answers you deserve. Good luck!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 8/13/2008 8:20 AM (GMT -7)   
thanks LondonRed and Nanners.

doing a little better emotionally today. going to do my best to stay strong and fight. sometimes when I get kicked down it takes me a while to get back up. thank you again everyone. *hugs*
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, acid reflux, and in the process of being diagnosed with either crohns, colitis, or even lupus...who knows really! the docs sure don't lol. Now possibly even celiacs disease!Lots of tests coming up so hopefully I'll know more soon. Too many meds to list!


suffering fool
New Member


Date Joined Aug 2008
Total Posts : 1
   Posted 8/14/2008 12:57 AM (GMT -7)   
Well, if we all on here have Crohns Disease I think we can all also relate. I discovered this wonderful disease way back 23 years ago. I will never forget the very first attack.
I was sitting eating dinner with my then husband. I even remember the food we were eating....pork chops, mashed potatoes and peas. After dinner, I got what I thought was just a stomach ache. That stomach ache lasted for almost two weeks. Ah those were the days.... it would come, and then go weeks, or months. It came without warning and left the same way. Not anymore, I AM CRONIC.... is that a death sentence? NAH
I went to the doc, and was told I had what the medical profession called " A nervous stomach" What the heck is that??????
After six months of crap, and as tenacious as I was and am, I made the MEDICAL PROFESSION do something about it.
I was told I had a disease. My knees went weak, I could almost see my life flash before my eyes. I had just had a baby one year earlier, I thought......will I see him grow up???
Talk about backwards, what a terrible thing for a specialist to say it like that. How about, " You have a condition known as Crohns Disease, it is not fatal, and with the proper diet and management, you will be fine.
Well........ this is what management meant....... I became a pharmacutical junkie! Percocet, Codiene, Ativan, sleeping pills, Demerol, zopiclone ( more sleeping pills) Then came Prednisone, of which I had every side effect it came with, so that was ruled out. I have tried Remicade, allergic, stemitil ( anti-nausient) sulfa drugs, bial-salts, the list is so long, I need to think. I have been on every drug and then some for crohns. I was heavily addicted to Percocet, took it for 7 years, had to have meth med to help me kick my habit. ( my doctor was my pusher, my connection ) I could and can walk in there, and ask for whatever I want. And he pulls out his pen and starts writting
I have been in clynical trials for crohns, a human guinea pig if you will. Nothing
I have had 6 bowel resections
3 fistula opperations I AM NOW WHAT IS CALLED CRONIC ( live with it every day )
over 100 tests.And after all that? I am not better off than before, except I have way less bowel, can't digest food well, skinny, have had anemia many times, potassium deficiency I could go on and on
And here I am today, there is no success story, I live this life, its all I have known for the past 23 years, I don't know what its like to have a solid bm. I don't know what its like to eat, and feel great after the meal. I have been bitter, had pity partys for myself every month, and continue down the road. Its not a great road, lots of bumps and potholes, but what else is there? Here I am. I want to talk to someone who has been though the ringer like me, just to know, that others go through that imbarrasment, running for the bathroom after a meal, having accidents in their pants like me. I am healthy looking on the outside, but man........you should see my insides.......
 
 

LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1184
   Posted 8/14/2008 2:27 AM (GMT -7)   
As a newly diagnosed sufferer - it's when I read stories like that that I dispair and almost feel that life isn't worth living. It makes is so scared of what can happen, we even forget that we are generally well and instantly start looking forward to the bad times ahead.

Diagnosis Oct 07 and then Aug 08: Patchy Ulcerative Pancolitis or Chrohn's Colitis to be confirmed after biopsy.
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate) for 30 days

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