I can't take much more of this

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yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/6/2007 2:57 PM (GMT -7)   
Here I am feeling sorry for myself. 18 months of pain and C and tests and back to square one. I had an uppper scope last week and all it showed was gastritis. I called today for the biopsy results and the perky nurse said "it is all fine!" why do I hate to hear that? I should be delighted to be "fine," but I am not "fine." I don't want more tests, I don't want to try more drugs, and I don't want to hurt.
I never complain--thanks for letting me :-) yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and imipramine...living with pain, but doing ok.


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 9/6/2007 3:06 PM (GMT -7)   
So sorry that you are still suffering and have no explanation. My folks were watching something on mystery diagnosis the other week and it was a very rare disease this woman had, sorry forget what it was, but remiacde helped it. Maybe you should look into rarer diseases with symptoms you have? Either that or get yet another opinion
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 9/6/2007 3:54 PM (GMT -7)   
Sorry to hear your not feeling well. I also think you may need a second opioion.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/6/2007 5:17 PM (GMT -7)   
Yp, I don't know why people in the profession always dismiss gastritis out of hand, like it's no biggie. I was given
that impression a month ago, I'm now being told, by a different doctor, that it is likely!! that I have disease in my
stomach. Everything is always worth getting checked out thoroughly. Best of luck, and always be led by your gut
feeling. No pun intended.......
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 9/6/2007 9:24 PM (GMT -7)   
yogaprof, when I first got sick with crohn's, my doc told me that it was the flu because I was too young to be have a serious illness. After she find out I had crohn's I recalled to her what she said and she felt really bad.

My docs take me very seriously now, but I can understand how you feel if they say oh it's just this, or oh, it's fine and that means you okay despite all your pain and suffering. Them's fighting words! Grrrrr. ;-)

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 9/6/2007 10:23 PM (GMT -7)   
I sure am sorry that you are having to go through all of this and the pain alone can really stress you and I don't think that there is not one person on this board that can't relate to you.I know when I first got sick I had every test you could think of and still nothing.But I would not give up because I knew in my heart that something was really wrong so I choce to get a scound opinion and I was glade that I did because I was not crazy there really was something wrong.So if you are not satified (sp) please seek another doctor.Let us know how you are doing.
Curley
.........
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/7/2007 4:13 AM (GMT -7)   
Hi Glad your test showed no CD perhaps you are in remission and it will not show up for awhile perhaps you have IBS with your CD. That would give you pain and D or C. I would change DR's if you feel your not getting the help you need perhaps it's scarring or something I don't know but maybe give yourself a rest from wondering for awhile.Really not much help here but hope you feel some relief soon. lol gail

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 9/7/2007 7:49 AM (GMT -7)   
Hi Yogaprof:

Why do you have adhesions? After three major abdomenal surgeries I have a surgical belly and my GI has said no more surgery unless it's to save your life (like when hasn't it been) but basically I am living with some adhesion pain, but I'm also dealing with pain from my crohn's. While the test results may be comforting for your GIs, you are not a test result, you are a human being in pain.

I went through five years of test after test being told that everything was "fine". Each time I heard that, it made me less inclined to disclose what I was experiencing. I became convinced that I wasn't really sick and that my misery was my own fault. (I ate the wrong thing, I was too lazy to exercise or cook nutritiously etc etc.) I endured more than two dozen full blown obstructive episodes at home because I was too embarrassed to go into hospital when all I really needed was to go to the bathroom). Finally I went to my GP and begged for some steroids and got instant relief. But still they wanted tests and the tests showed no crohn's. And on it went, except I got so scared by the violence of the obstructive episodes that I was finally convinced by a friend, who happened to be away with me when one of them occurred, to go to hospital when they happened.

That's when all heck broke loose. When I disclosed that these episodes had been going on for years their first question was why didn't you come earlier? Yah, right like I hadn't been explaining for five years what I was going through?

Anyway to make a long story even longer, when I finally had my second resection surprise surprise my bowel was completely occluded by a crohn's stricture and the crohn's had eaten right through the bowel wall in several places.

You can be sure that now, whenever I go in to see my GI I remind him that tests are only part of the picture. The most important piece is the patient. Just stay grounded in reality Yoga prof. Be your own investigator and if you can't find an explanation for your pain that makes sense to you, keep hounding them, because the disease could be there active without them knowing it.

I paid for my embarrassment and my unwillingness to be seen as a whiner. I'd rather be seen as a complainer and get appropriate treatment than to accept their findings when they are at odds with your experience.
Belleenstein:

30+ years living with Crohn's.


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 9/7/2007 9:09 AM (GMT -7)   
Bellenstein is exactly right.

The tests don't show everything. I just went through yet another surgery, and as usual, there were surprises. I had a "chronic abscess" at the site of my anastamosis, which caused all kinds of problems and they had to graft parts of my membranes to patch part of my peritoneum. None of this showed up on my tests and I've had Colonoscopies, CT scans (with and without contrast), MRI's, X-rays, Upper GI's, and numerous blood tests. It's pretty scary that so much doesn't show up.

All you can do is keep pushing your doctor, or if he's unreceptive, get a new one. You know yourself and your body better than they do.
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/7/2007 2:00 PM (GMT -7)   
interestingly, Roni, the docs told me I was to OLD to be sick!
Bell, such good points you made. I do tend to think I must be fine if they tell me I am, even as I know that something is wrong. you are right to remind me to keep at it.
my adhesions are from three pelvic surgeries in my 20's, the last one being a hysterectomy. the two laporoscopies I had last year showed a bit of adhesions, but no big mess.
I know I need to call my GI and see what to do next. I am not ready to change docs, as he has continued to believe in my and try new things, but it is just hard for me to keep it up.
HW is a god-send...thanks so much to all of you! YP
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and imipramine...living with pain, but doing ok.


miraclesivseen
Regular Member


Date Joined May 2007
Total Posts : 169
   Posted 9/7/2007 3:42 PM (GMT -7)   
I cannot tell you how many times they (docs) have told me everything looks fine and I was so sick.

Have you gotten a second opinion.

I know you r sick of the test, blood work, doc., visits, I can go on and on NOT TO MENTION the pain.

GO see another doctor with all of your recent results, tests etc.,

2 doctors told me I had an ulcer, lololol, My colon almost ruptured one night, thats how I was dx with crohns, and I don't want to even go into the mess I went through with the brain tumor.

Please go get another opinion!
Brain tumor 1981
Dx.Crohns disease 1996
bowel resecction 2001
Thyroid cancer 2001
breast cancer .....currently waiting treatment options
seizure disorder .....all my life.
 
 
 
 
 


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/7/2007 8:51 PM (GMT -7)   
the nurse called me from my GI today. she said I don't have that poloric-whatever that often causes gastritis, so they don't know what is causing the inflammation. then they always say "are you taking lots of advil?" I haven't had any since I got sick! so, they want me to come in again next week...and it continues.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and imipramine...living with pain, but doing ok.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 9/8/2007 7:40 AM (GMT -7)   
I went through a similar thing last year, actually still going through it. I was hospitalized 4 times for gastritis last year. Each time, multiple tests, no cause. You must be taking NSAIDs. NO. No H. Pylori either. I'm still having gastritis episodes, but now I just stay home since they can't do anything for me at the hospital except keep me hydrated. I swear it's CD. What else could it be. They just can't find it. WE are not crazy, THEY just haven't found it yet.

I know how frustrated you are, I just hope you can find some answers soon, and some relief from your pain sooner! :-)
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.....


Strat43z
Regular Member


Date Joined Mar 2007
Total Posts : 20
   Posted 9/8/2007 10:54 AM (GMT -7)   
belleenstein said...
Hi Yogaprof:

I went through five years of test after test being told that everything was "fine". Each time I heard that, it made me less inclined to disclose what I was experiencing. I became convinced that I wasn't really sick and that my misery was my own fault. (I ate the wrong thing, I was too lazy to exercise or cook nutritiously etc etc.)

...tests are only part of the picture. The most important piece is the patient.

I paid for my embarrassment and my unwillingness to be seen as a whiner. I'd rather be seen as a complainer and get appropriate treatment than to accept their findings when they are at odds with your experience.

 

 There's a lot of good wisdom in what belleenstein says.  I too have gone 7 months round and round with my GI and two colorectal surgeons.  I had a diagnosis of IBS 22 years ago after an endoscope/colonoscopy that revealed nothing.  Twenty two years of anti-diarrhea medicines and the constant pursuit of nailing down what I was doing to cause this infliction.

 

 A CT scan revealed probably Crohn’s with inflammation, elongated colon and a couple other medical terms.  An endoscope showed gastritis, although I never suffered from heartburn, with other complications.  The colonoscopy removed four polyps; two massive and precancerous and the follow up removed two more adenomas. But none of this is why I finally went to seek medical assistance.

 

 For a year I had an abscessing fistula that would be very painful and eventually burst.  There would be quite a bit of blood and puss.  I got creative about how to keep from being publicly humiliated if it burst at an inopportune time.  I’m 42, so I thought it was something you got when you were older and it was embarrassing, so I kept it to myself.

 

 It all came together in January.  I couldn’t live like this anymore.  My GI ran more tests but not immediately or thoroughly.  He sent me to two different Colorectal Surgeons who said come back when it abscesses, but it was never a good time when it did. They all pretty much wrote the fistula and bleeding off as Type I hemorrhoids. After months of this I thought I was going crazy, that it was in my head until I experienced the pain.  I don’t whine but I felt like a big hypochondriac. I too became reluctant to reveal anymore symptoms or experiences.

 

 I finally two weeks ago went to a large leading hospital where the colorectal surgeon actually talked to me for a good long time.  He then patiently let me show him precisely the area and he felt indentions/pouches which led him to schedule surgery. A week later he opened the fistula, (which happened to be two areas connected by a tunnel), validating what I had fought seven months to convince my GI, two colorectal surgeons and a handful of ER personnel.  It was there and growing.

 

Remember that this disease has no test that is 100% accurate and simpler solutions or causes are what most doctors try first. 

 

 Someone here at the onset of my experiences suggested getting a GI that specializes in IBD and its patients.  Don’t let a long drive stop you from seeking the best.  Don’t let your doctor cut you off mid-sentence, make sure they listen correctly to what you are saying and make sure they are providing maintenance for your complaints while still being proactive about what is causing them.  Sometimes it seems that you get more attention and care from a server in a restaurant than a doctor, but one gets paid a heck of a lot more money.

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