HOW WERE YOU DIAGNOSED WITH CROHN'S

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Valentinesday1979
New Member


Date Joined Nov 2008
Total Posts : 4
   Posted 11/23/2008 5:32 PM (GMT -7)   
I'm curious to know how everyone was diagnosed with their illness. I've had abdominal pain and 2-10+ BM's a day since 2005. I've had countless ER visits where they just said it was IBS or just unexplained abd pain. In April 2008 I went to the ER because I was feeling the worst pain i had ever felt in my life. After a CT scan which said i had Ileitis, I was admitted and given meds and IV fluids for 4 days then discharged. My then GI doc reviewed my records and was convinced it was just gastroenteritis. I had an Upper GI with small bowel follow through, it came back normal only that the barium went through to my sm bowel at lightening speed...I was then hospitalized again in Sept 2008 for Ileitis after the CT scan in the er showed the same thing as in April. this time I was given steroids and antibiotics. I went to my then GI doc who requested I get another colonoscopy done. Got it done, of course, it came back fine. My GI doc told me i was fine, no evidence of Ileitis, and to come back for any "other" reasons. I switched to another GI doc and after reviewing my CT scans from the hospital, he said, yes i have crohn's which affects my ileum. He put me on prednisione 40mg's...saw him another 2 wks later, lowered me down to 30mg's... then to 20mg's the following 2 wks...I started having pain again and the diarrhea came back so he ordered me to get a small bowel series. I went to his office last week with the films and he said my ileum looks normal. He's now thinking about taking the Crohn's diagnosis away. I am soo confused. How can i have ileitis on a CT scan, but not on the small bowel series? and do you have to be in excruciating pain during these tests in order for it to show up?? Any insight is greatly appreciated.
FINALLY Diagnosed in October 2008 after 2.5 yrs of BS doctors who don't know what they're talking about...

Currently on 20mg of Prednisone, tapered from 40mg

Surgeries: Umbilical Hernia with Bowel Obstruction August 2006
Anal Fissure & Anal/Rectal Polyp September 2006


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 11/23/2008 5:44 PM (GMT -7)   
I was dx by caspule endoscopy after being blown off for a year. I then had the prometheus  serology 7 testing which was indicative of IBD. My disease is in the jejunum and proximal ileum so it is difficult to see by conventional methods. I just don't get why docs are so reluctant to listen and to make this diagnosis. we are not stupid, and we are not liars.  i hear this over and over, and it is really discouraging. 

MTLGUY40
Regular Member


Date Joined Nov 2008
Total Posts : 44
   Posted 11/23/2008 5:51 PM (GMT -7)   
Geeze I was diagonosed 24 years ago after terrible pain and d that never stopped and I couldn't get out of bed.....thats about a million bowel movements ago

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 11/23/2008 6:23 PM (GMT -7)   
abdominal pain, D, and bloody stools that would come and go for months. always felt like i was coming down with the flu but it just wouldnt manifest itself and thus i could never get better. finally went to the doc for a pounding headache (felt like some one was driving a railroad spike into my forehead). blood work showed i was grossly anemic and they wanted to give me a blood transfusion, which i declined cos i didnt feel anemic and had surfed my brains out the day before. suspecting an ulcer, they did an endoscopy but it only revealed gastritis, not the cause of the bloody stools. colonoscopy allowed for the diagnosis of crohns, which runs in my family (maternal grandfather had it - died of short bowel syndrome when i was like 5 yrs old).
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


catpower
Regular Member


Date Joined Nov 2008
Total Posts : 192
   Posted 11/23/2008 6:36 PM (GMT -7)   
12 years ago I was diagnosed with Ulcerative Colitis after they found ulcers in my lower colon via colonoscopy. At that time, I was losing a ton of weight, having constant D and bloody stools. My SBFT, TAG White Blood Cell tests, ultrasounds, bloodwork were all fine.

I went on Asacol for 2 years. After 2 years of feeling better (I also drastically changed my diet), I went to a new doctor, got a sigmoidoscoopy right there in his office (I wasn't even expecting one). He did not see any ulcers or inflammation and my blood work was fine, so he ruled IBS, which I happily accepted as a diagnosis and left.

10 years later, after many bouts of what seem to be flare ups, I decided to go to a GI again. During that 10 year span, I always had D and stomach pain, but I grew a tolerance for it and most of the time switching to an all liquid diet would help when I was feeling really sick. This time, my symptoms were as bad as, if not worse, than they were 12 years ago (minus bloody stools) and 2 months of only consuming liquids did not help. My GI ordered blood work, all of which looked fine. I had to wait a month for my colonoscopy, and at that time I was starting to feel a bit better and I was eating again. Nevertheless, the colonoscopy showed scattered ulcers and inflammation in the illeum and upper colon, and the biopsies confirmed patterns of inflammation. I have a SBFT scheduled soon, but I am guessing it won't show anything, and my GI doc said the test results of the SBFT will not change his diagnosis.

Crohn's can be hard to diagnose. My current GI thinks I was misdiagnosed 12 years ago, and that I have had a moderate case of Crohn's all along. Sometimes it takes a while for even colonoscopies to pick up patterns of inflammation. Good luck and I hope you get a dx soon!
Diagnosed with Crohn's Disease; Meds: Entocort; female in late twenties.


emrose
Regular Member


Date Joined Oct 2008
Total Posts : 63
   Posted 11/23/2008 7:28 PM (GMT -7)   
My husbands diagnosis:
1. Oct 2007: CT scan shows inflamation, doc said it was diverticulitis and to stop eating seeds
2. Pain continues so another CT scan may 2008 shows increased inflamation
3. Phone call from nurse saying he likely has colon cancer!!
4. Found a new doc who referred him to a GI
6. June 2008: colonoscopy can't get through. Biopsy confirms not cancer, likely UC or crohns
8. 60mg prednisone prescribed
9. July 2008: 2nd colonoscopy still can't get through.
10. GI says it's crohns and not UC because rectum is fine. Inflamation in his sigmoid colon. Tells us he needs surgery :(

Somewhere in there he has his wisdom teeth removed, an abcess drained and our beloved dog died! When it rains it pours....

I wish you the best of luck! I still wonder about my husbands diagnosis. Just seems so hard to be SURE

inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 11/23/2008 8:05 PM (GMT -7)   
Severe pain, thought it was an appendicitis. After a CT in the ER they recognized a blockage. ER doc suspected CD and they confirmed with a scope a day later. I had no clue.
Hoping to stay in remission after the birth of a healthy baby girl. On Pentasa during my pregnancy, went med-free 2 months to nurse (stupid), but back on Pentasa and still nursing.


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 11/23/2008 9:27 PM (GMT -7)   
well my orthodontist was the first to say for me to be tested for crohns,so my family GP wasnt impressed but ordered bloods to be dne neway and they cme back fine 2 years later and horrible D and pain went to gyno coz i had a horrible staph infection who sed it looked like crohns and then i got sent to my gi and scope after that.....so pretty much my orthodontist adn my gyno Diagnosed me.
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 11/24/2008 10:16 AM (GMT -7)   
i started just being really gassy all the time for a few months..then i started crapping out mucus like stuff...thats when i got ahold of my twin sister's GI (she has ulcerative colitis) and I figured I had UC too cuz my twin has it!...a week before my scope I started with alot of bleeding and going to the bathroom atleast 10 times a day, but it was all blood all the time and sooooooo painful...i got diagnosed with crohn's and lost so much blood and weight in the 2 weeks after the scope that I was hospitalized for dehydration and a fever of 103...and was there for 34 days...it sucked...i've only been out for a few months..im still so new to all of this..it happened so suddenly....
21 year old female
Diagnosed with Moderate to Severe Crohn's August 2008 (hospitalized for over a month right after)
Taking...canasa, rowasa, 6mp, and Remicade every 6 weeks
As needed...zofran, lortab, tylenol 3, bentyl
Off of Prednisone!!!


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 11/24/2008 11:00 AM (GMT -7)   
I don't know when I got Crohn's but I could have had it since I was 19. That's how old I was when I first went to the doctor. He told me that he thought I was lactose intolerent. My daughter was diagnosed with it 15 years ago at the age of 12 from a peri-anal fistula. I went back to the doctor around the same time for a check-up at the age of 34. Again mentioned my "d" and joint pains. He said I probably had IBS. I listened to the doctors because I never had issues with weight loss or blood. Speed forward to the age of 46.

Developed a fistula to my bladder. Doctors still thought it was something other then Crohn's. He said he was 90% sure it was diverticulitis. I did have to have a resection to repair my colon and fix my bladder. It wasn't until my surgery that they found out it was Crohn's after all.

After my surgery and recovery I realized just how sick I was. I hardly had any energy to do anything but work, come home and crash.

It's strange that both my daughter and I discovered Crohn's because of fistulae. But at least I didn't have to have all those tests to confirm even though I did lose half my colon because of it.
Vicky / 48 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (27) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


jar567
New Member


Date Joined Mar 2008
Total Posts : 14
   Posted 11/24/2008 11:12 AM (GMT -7)   
I started having pains in lower stomach and D, cramping in stomach that was so bad I couldn't stand in fall of 07 so I saw a GI and had a scope at the end of that year. Results were that everything looked normal so they said I had IBS. I was still having major problems and in Jan 08 they took a blood test (promethus ?? i think) that showed I tested positive for Crohns and that it was inactive. I still have problems and can't get info from docs so am looking at different doctors. I hope that you can get the right diagnosis, I know it can be frustrating when they think it is all in your head.... good luck!

ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 11/24/2008 5:10 PM (GMT -7)   
I was having lots of pain, and ileus (bowel obstruction). This went on for a year, with many trips to the ER. I finally requested an exploratory surgery. As soon as the surgeon cut me open, he recognized that he saw as Crohn's disease. He removed two obstructions, and the pathology report confirmed that it was Crohn's.
Crohn's since 1988
3 resections


cinpro
Regular Member


Date Joined Sep 2008
Total Posts : 36
   Posted 11/24/2008 7:38 PM (GMT -7)   
i went to the ER thinking I had gotten food poisoning, severe D and cramping for 3 days. they gave me fluids and antibiotics and send me home many hours later. i was back a week later with teh same thing and told them it had to be something else. one doc ordered a CT after feeling around on my stomach. after drinking allot of barium (who would think you could get sick of the taste of pina colada?) the test showed I had blockage they pumped me full of fluids to try to get it to pass on its own with no luck. so i went in for resection lrg and sm intestine, removed my appendix, it had calcified. been good until this year, and thats a whole other story.
I shed tears when I found this place...I have felt so alone for so long...Its good to know there are caring ppl out there who can understand where I'm coming from.


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 11/24/2008 7:54 PM (GMT -7)   
i was diagnosed after going to my pcp with severe abdominal pain and up to 15 bm's a day. he ordered a ultra sound with no luck. next was a ct scan which they found an abnormality and it was suggested i go for a colonoscopy. which, my gi found several ulcerations and strictures. he actually had to pop the scope through some of those tight areas. i have about 8 or so inches of strictures in the terminal ileum.

good luck with getting some answers so you can start a treatment plan as soon as possible. i know prednisone helped me out but it made me bonkers and refuse to go back on it. not to mention i have osteopenia now as well.
.: stephanie :.
33 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
meddies: 6mp, percocet, trazodone, ativan, iron, calcium, folic acid & some other vits


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/24/2008 8:00 PM (GMT -7)   
My bowel obstructed to the point of vomiting fecal fluid. Got to the hospital just in time. Diagnosed after colonoscopy and surgery.
I was ill awhile before that point, with diarrhea, pain and weight loss. Was told many things from IBS to depression, God I was in
a mess, and then being told (in a roundabout way) that was all in my head, was the last straw. I obstructed a week later, and in some
ways I was glad that happened. At least I knew I was truly sick...
Since then I've never gone into remission, and gone on to have other diseases diagnosed as a spin off to crohns... It's been 12 long
years, and I'm still fighting, but at least I'm fighting!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


mkl11
Regular Member


Date Joined Jul 2007
Total Posts : 494
   Posted 11/24/2008 9:16 PM (GMT -7)   
I'm a weird, but lucky, case: Only symptom was bleeding which increased over the period of several months (was told I had a hemorrhoid or slight anal tear) to the point that I went to the ER. Also had some autoimmune disorder symptoms. Was sent to a rectal specialist (that was no fun) and finally sent to a GI where I got a colonoscopy and was diagnosed. Never really had D, and still don't, just narrow stools and blood when I'm flaring.
20 y/o, diagnosed 6/2007. On Humira, no wheat or corn syrup, low sugar, low dairy.


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 11/24/2008 9:37 PM (GMT -7)   

Mine started out with eye inflammation that would not go away.  I DID have diarrhea and gas, but I figured it was just my stomach.  Anyhow, after having the eye inflammation for about 6 months, I went to see my Internist and she instantly thought Crohn's.  Getting diagnosed was another issue. 

The first GI would not diagnose it, although I had inflammation in my ascending colon, cecum, and inflammation in my TI and ulcers.  I also had extraintestinal symptoms as well that the first GI pretty much blew off. 

I had the SBFT which showed absolutely nothing.  Then I had the pill cam done which showed inflammation throughout my entire small bowel, and that got me the official diagnosis.

My bloodwork has always been normal except for the high WBC count probably caused by taking prednisone.  My serology 7 was also normal. 

I wasn't in awful pain at the time I had any of the tests, come to think of it.  Honestly, my bowel symptoms are minor compared to my extraintestinal symptoms, which is weird, but I guess that is just how I flare.  Don't get me wrong, sometimes my stomach about kills me, but the arthritis and the scleritis (especially the scleritis) are just awful at times. 

I guess my point is even though my stomach was not feeling terrible at the time, I still had inflammation show up on both my colonoscopy and pill cam. 

Best of luck to you and keep us posted. 

 

 

 


mkl11
Regular Member


Date Joined Jul 2007
Total Posts : 494
   Posted 11/24/2008 9:53 PM (GMT -7)   
Indigosunrise--I am very similar in that the majority of my symptoms tend to be extraintestinal (particularly skin/gums), though I certainly suffer from intestinal issues, but sometimes I get to the point I'm never sure I have Crohn's and feel like some of my medicine is just unnecessary. While I'm of course never happy anyone else has to suffer from this, it's nice to read about someone else that has a similar Crohn's case.
20 y/o, diagnosed 6/2007. On Humira, no wheat or corn syrup, low sugar, low dairy.


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 11/24/2008 11:08 PM (GMT -7)   
Diagnosed late December 2001 (after only having symptoms since November) as having Ulcerative Colitis. Conoloscopy showed inflamation and numerous bleeding ulcers throughout the entire length of my colon. Three photos of that c'oscopy showed about 30-40 ulcers in 2"-3" sections of different parts of my colon.
Treated for UC until surgery in May/2008. Original surgery was to remove my entire colon, have a colostomy bag for several months and then a J-pouch surgery. In the operating theater, my surgeon discovered upon opening me up, that there was really only one 4" area of my descending colon that was badly diseased, the rest of my colon looked good and my small intestines also looked pretty good. All the signs he saw pointed to Crohn's, so he only removed 6" of that bad section and I didn't have to have a colostomy. It took about a week, but my pathology on that colon portion came back positive for Crohn's.
Surgeon also removed my appendix.
Heidi
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.
2001 Dx'd with UC.  No remission.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returning after resuming 6MP.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/24/2008 11:43 PM (GMT -7)   
17 yrs ago I had serious issues with perianal crohn's skin tags, only they were thought to be hemmies since I wasn't really exhibiting any internal symptoms, so just before they sent me in for hemmie surgery to have them banded I started having bowel movement frequency which they (docs) all sluffed off as being nothing more than the severe aggrivation from the "hemmies" because there was no D or bleeding, but quite shortly after the "hemmie surgery" I got sick internally with CD (lots of D and mucus) and a few weeks after that my doc sent me to a GI which I explained the hemmie situation to and when he saw my butt (as these skin tags are external and not internal, although they used to be since it's like my butt hole has turned inside out) first thing he said was, "those aren't hemmies, those are perianal crohn's skin tags", then he scoped me (sigmoidoscopy) while awake and that was pain I never wanted to feel again (so they always put me right under now) and told me I most definitely had CD affecting my rectom (proctitis) and colon (crohn's colitis), he sent me for upper GI tests which also confirmed CD activity in my TI (lower part of the small intestine) so I was a classic case of CD...after getting the un-neccesary surgery of course.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/24/2008 11:48 PM (GMT -7)   
catpower said...
12 years ago I was diagnosed with Ulcerative Colitis after they found ulcers in my lower colon via colonoscopy. At that time, I was losing a ton of weight, having constant D and bloody stools. My SBFT, TAG White Blood Cell tests, ultrasounds, bloodwork were all fine.

I went on Asacol for 2 years. After 2 years of feeling better (I also drastically changed my diet), I went to a new doctor, got a sigmoidoscoopy right there in his office (I wasn't even expecting one). He did not see any ulcers or inflammation and my blood work was fine, so he ruled IBS, which I happily accepted as a diagnosis and left.

10 years later, after many bouts of what seem to be flare ups, I decided to go to a GI again. During that 10 year span, I always had D and stomach pain, but I grew a tolerance for it and most of the time switching to an all liquid diet would help when I was feeling really sick. This time, my symptoms were as bad as, if not worse, than they were 12 years ago (minus bloody stools) and 2 months of only consuming liquids did not help. My GI ordered blood work, all of which looked fine. I had to wait a month for my colonoscopy, and at that time I was starting to feel a bit better and I was eating again. Nevertheless, the colonoscopy showed scattered ulcers and inflammation in the illeum and upper colon, and the biopsies confirmed patterns of inflammation. I have a SBFT scheduled soon, but I am guessing it won't show anything, and my GI doc said the test results of the SBFT will not change his diagnosis.

Crohn's can be hard to diagnose. My current GI thinks I was misdiagnosed 12 years ago, and that I have had a moderate case of Crohn's all along. Sometimes it takes a while for even colonoscopies to pick up patterns of inflammation. Good luck and I hope you get a dx soon!

 
Scattered inflammation as in patchy with healthy tissues in between is crohns and not UC, with UC the entire area affected will be inflamed....IF your SBFT shows any inflammation then that guarantees it's CD and not UC and therefore your doc should confirm CD for you.  I agree with your GI that you were most likely misDX 12 yrs ago.  The same meds used to treat UC are used to treat crohn's colitis as well (which is inflammation of the colon) since CD can affect any part of the GI tract and UC is limited to the colon/rectom only.
 
:)
My bum is broken....there's a big crack down the middle of it! LOL :)


chico41
Regular Member


Date Joined Jan 2006
Total Posts : 135
   Posted 11/25/2008 3:00 AM (GMT -7)   

It started in 93 roughly, with bathroom visits, 10-20 per day,mucus,blood and weight loss.  was diagnosed with u.c.  took every drug out there, seemed to work somewhat but i did not lead a normal life, (as to us chrohnies, what is normal)  it got alot worse in 02.   had upper gi and lower gi done and said my large intestine was full of ulcers.  Was sent to Rochester MN.  took my large instestine out.  Was put on the bag for 3 months.  then went back and made me a J. pouch.  Then in 02 got really sick went in for an upper gi and came out and went straight into the hospital.  was at rochester for 21 days.  14 days devil without food, just to figure out what the problem was.  told me it was Chrohns, and put me on Remicade.  i am assuming it was chrohns from day one.  WHat  really helped me accept this disease, was my stay in Rochester.  There are alot of ppl worse off then i ever have been.  yeah

48 yr old male.

remicade every 2 months

 


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 11/25/2008 5:13 AM (GMT -7)   
Several bouts of what I thought was food poisoning and several trips to ER, horrible pain, explosive D and high white blood cell count admitted in Jan 2007 - had CTs done, colonoscopy many blood tests - diagnosis CD. Since, several GI docs, several diagnosis IBS, UC and CD. Symptoms the same but considered mild in comparison to flares that symptom meds cannot control, which land me in the ER (no more hospital stays unless ABSOLUTELY necessary).

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 11/25/2008 10:28 AM (GMT -7)   
It took 8 years for my diagnosis.  Upper GIs showed gastritis, acid reflux, etc. but the colonoscopies showed nothing.  Test after test showed nothing other than a bad gallbladder and endometriosis.  Finally, my GI told me to go see a different GI, who did the capsule endoscopy and found ulcers in the terminal illeum.  It started out as "indeterminate colitis" as I had symptoms of both Crohn's and Colitis.  Serentology test said ulcerative colitis but somehow, over the years, the dx got changed to Crohn's.  I too was told it was all in my head at first.     

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 11/25/2008 5:01 PM (GMT -7)   
Well. Five years ago...I was sick. I'd been sick for about a year before I went to a doctor. I'd lose my appetite lightening quick. As in, taking a bite of food, then go for next bite and the smell would turn my stomach so I didn't eat it. I also would get mild tummy aches after eating. That' how it started. Toward the end of that year, I was eating a single slice of bread with honey on it a day and drinking pepto all the time. I'd been checked for IBDs, diagnosed with IBS, possible ovarian cancer, acid reflux, and stomach ulcers. I had three surgeries in three months to deal with abscesses, fistulas, and the first was exploratory to figure out what caused the massive infection across my lower abdomen. I'd had hyda scans, peptic scans, CT scans, the pill camera, two hospitals that said I didn't have Crohns. Fast foward five years and I wake after emergency surgery to a doctor telling me I have Crohns. I told him he was mistaken and to do the tests again 'cause I'd already been tested for it three times and it came up negative (I was also REALLY groggy and drugged up). I never met the GI, actually. I left the hospital with a brochure on Crohns and no one EVER explained anything about it to me. They just kicked me out without telling me anything about the disease other than that I had it.

I was never given the number for the GI. I got it at my surgeon's office when I mentioned that I couldn't stop going to the bathroom. No one told me THEN that I'd have to be on some kind of maintenance drug for the rest of my life. The surgeon told me to take a little imodium for the D and to take Advil for the pain. Actually, I learned everything about this disease on my own. I've never actually talked to a DOCTOR about it and how it has and is affecting my life. I mention it to the ER docs and I get the "she's one of THOSE" looks. They don't tell me about Crohns. I've called the GI and they just refill my meds and tell me take Tylenol if I'm in pain (they don't pay attention when I mention that I have liver issues). So honestly, as bad as it is...I do my best on my own to figure out about the disease 'cause I don't trust doctors...I don't LIKE doctors.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Dx'd: February 2007.
Pentasa (and much mental screaming)

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