Newbie: Does This Even Sound Like Crohn's?

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mycropht
New Member


Date Joined Nov 2007
Total Posts : 7
   Posted 11/15/2007 3:03 PM (GMT -7)   
Hey, there. I'm new here and discovered the site after researching Crohn's.

I'm 37, live in Nashville Tennessee. I'm married with no kids and two dogs. I have brown hair and hazel eyes. (Just trying to give a sense of who I am beyond the pain.)

I have been struggling with Abdominal pain and chronic diarrhea since I was about 12. 14 years ago I was diagnosed with Endometriosis via laparoscopy.

In the past 12 years I've passed 58 kidney stones.

I have chronic pain on the lower right side of my abdomen, arthritis and wierd stuff going on with my mouth. I spent years having my urologist tell me the pain was gynecological and my gynecologist tell me the pain was urological.

A year ago I was diagnosed with lupus, but didn't have an ANA because we didn't have insurance and we didn't want a chronic condition on record before starting new insurance.

I got the new insurance, saw a new PCP and she immediately said "sounds like Crohn's disease to me." Frankly, I've spent so long thinking it was Endo or kidney stones that I never gave one moment's thought to it being any type of bowel problem, but the onset of the arthritis (two years ago) has flipped some medical trigger, I guess. My ANA was negative as were my thyroid, parathyroid and blood sugar tests. (I have blood sugar..just not diabetes.)

I saw the Gastroenterologist for the first time 3 weeks ago. After a 3 hour appointment wherein he examined every inch of my body including my eyes and mouth and abdomen, he's said he thinks it's Crohn's but we're having an upper and lower endoscopy on Monday to make sure.

I've spent so many years without a confirmed diagnosis that I'm nervous the scans won't show anything and I'll be back to square one.

So, anyway, does any of this sound like Crohn's to all of you? I just need something to be found so they can give me treatment so I won't be in this constant pain.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 11/15/2007 3:38 PM (GMT -7)   
I'm impressed that you had a three hour appointment!!! Crohn's and lupus are both auto-immune disorders and I think they can be related. The only way to know for sure is through the medical tests. A year ago I was hospitalized with severe anemia, and they did a colonoscopy, endoscopy and barium swallow and found nothing. This year when I got sick again, they did the camera swallow test, which showed an ulcer in my small intestine, a CT of my abdomen and pelvis, which showed a thickened illeum and a blood test from the Prometheus labs which was positive for Crohn's. A repeat colonoscopy confirmed the Crohn's by biopsy in my illeum. Make sure they don't stop after the endoscopy and complete a full work-up. Good luck, I hope this helps
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 11/15/2007 4:01 PM (GMT -7)   
welcome and sorry you are going through so much, but how wonderful you have a doc who is paying attention. I have had an up and down diagnosis, so I understand you desire for answers. let us know what the tests show. have you had other surgeries since the laparoscopy? I always ask, as I have adhesions from previous surgeries that cause extreme pain and have mimiced crohns. take care, 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 began Humira 9/07.


mycropht
New Member


Date Joined Nov 2007
Total Posts : 7
   Posted 11/15/2007 4:08 PM (GMT -7)   
It's been years to get two docs (the PCP and the G/Ent) this good.

To clarify some things:

--They are saying that the former diagnosis of Lupus is incorrect and are now saying the Lupus symptoms (arthritis, fever, inflammation) are from Crohn's.

--I've had two laparoscopies. The first diagnosed the endo. The second I begged for in tears because of the localised right abdominal pain. That surgery showed massive adhesions. All on the left side. Nothing on the right. The adhesions were removed, but I still have the right-side (lower quadrant) pain, diarrhea, fatigue, etc.

From what I understand I could either have Crohn's or Endo & IBS. As much as I hate to say it, I'd like for it to be Crohn's if for no other reason than there seems to be some sort of treatment for Crohn's which goes beyond "suck it up, girlie." Endo treatment seems to be "use a heating pad."

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/15/2007 7:24 PM (GMT -7)   
Sounds like Crohns to me. Many folks here have kidney stones along with their Crohns. Its one of the side problems associated with it. Have you had any tests such as a colonoscopy or a small bowel follow thru. These will help alot in your diagnosis. Keep us posted. And welcome to Healing Well!!
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.


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 11/15/2007 7:28 PM (GMT -7)   
mycropht said...
From what I understand I could either have Crohn's or Endo & IBS. As much as I hate to say it, I'd like for it to be Crohn's if for no other reason than there seems to be some sort of treatment for Crohn's which goes beyond "suck it up, girlie." Endo treatment seems to be "use a heating pad."
I can relate. the only treatment of adhesions is take pain meds or have surgery, again, which causes more adhesions.
we all understand your desire for answers; I hope they come quickly.

Krysta
Regular Member


Date Joined Jun 2007
Total Posts : 340
   Posted 11/15/2007 8:52 PM (GMT -7)   
Definitely sounds like crohn's to me. I have pretty much all of the same symptoms as you. The colonoscopy usually is a very good way of diagnosing. Right lower quadrant pain is more classic terminal ileum pain than endometriosis. But you could have Crohn's and IBS like me! lol. There are treatments for this disease, but there is no cure. It's pretty much try this med, ok try this med, remission for a little while, flare, remission, flare, flare, surgery, flare... etc. But I am in a remission right now due to remicade. My first remission in 7 years! The kidney stones are a common associated problem with Crohn's disease, due to increased absorption of oxalate.

Good luck! Please let us know how everything goes!!
Finally Dx- April 13 2007 (age 26) ilio-crohn's-colitis. Surgeries:appendectomy, cholecystectomy, tonsillectomy, pinidal cyst removed,emergency abdominal surgery for hemorrhaging ovary from burst ovarian cyst, LEEPcervix, emergency abdominal surgery for grapefruit sized ovarian cyst removal, D and C of uterus, lumpectomy of breast.
MEDS: remicade, prednisone, Asacol TID, protonix, metformin, buspar, trazodone, multi V, B complex, flaxseed. Vegetarian, leaning towards vegan. no nuts, seeds, or wheat.
Many allergies. Polycystic ovarian syndrome, anxiety, depression, ITP 
Every tool is a weapon if you hold it right ~ Ani Difranco
 
 


mycropht
New Member


Date Joined Nov 2007
Total Posts : 7
   Posted 11/15/2007 9:13 PM (GMT -7)   
Thanks all of you for your kind responses. It's good to know that at least a few people understand some of what I'm going through.

rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 11/16/2007 6:49 AM (GMT -7)   
It sounds like you described my situation, minus the kidney stones. My gut problems first occurred in college at which time they treated me for "nerves". (didn't have the term IBS then) They disappeared for years. 20 years ago I developed joint pain and had numerous work ups for lupus and related diseases, all negative. No gi symptoms at this time. Then 10 years ago I woke up one morning in significant pain that felt exactly like menstrual pain. At this time the pain was on both sides. (I had no uterus by this time) I saw my gyn because that's the only doctor I had (before managed care and required pcps, only had seen specialists like the rheumatologist) and that's what it felt like. I had had endometriosis diagnosed in the early 70's just from symptoms alone, was scheduled for surgery, but became pregnant before it was done so that was the end of that. The gyn told me it was most likely not endometriosis at my age and mroe likely a disease like crohn's which I laughed about because my gut worked perfectly (except for many years ago in college which I had long forgotten) Now I needed a pcp and went back and forth between him and the gyn with ultrasounds etc. The gyn finally agreed to do a laparoscopy but only if I had a gi consult first. I did and he laughed and said he doubted it was crohn's but did a colonoscopy and sure enough, not crohn's. (no biopsies) After the colonoscopy the pain was only on the right side. So I had the laparoscopy which showed the same as yours did- massive adhesions on the left side, not much on the right *except* for one adhesion well out of my pelvis that tied my ileum to the front abdominal wall. He thought it was a miracle I hadn't obstructed from this. He released it and the pain was gone! For 3 months and then it was back in the same location. (he left most of the other adhesions alone because he was sure he found the problem and he felt that it was best to leave the other adhesions alone since it was obvious I had them for a long time) So I had another laparoscopy, this time by a general surgeon since my problem was not gynecological. Even though the exact same pain had returned on the right side, the adhesion they thought was causing the problem had NOT reformed. So the general surgeon worked on all the other adhesions on the left side. Removing the top layer he found that my sigmoid colon was stuck to my right pelvic wall. (the gi doc had done the colonosocpy with it like that) After this laparoscopy I got little relief from the pain. I've been told that anesthesia affects the immune system and that could possibly explain the relief I got the first time.

I have had the right sided pain on and off for 10 years. I developed inflammatory arthritis and gradually gi symptoms developed over the past 4 years. I have had more workups for lupus and related diseases, still negative. The rheumatologist I saw for the arthritis was sure I had IBD. I've had the mouth thing for years and years as well.

I finally found a gi doctor willing to do a trial of medication which has worked well.

Sorry this is long but I got excited when I read your story. I hope you get your answer after such a long time. I know how that feels (as do many people on this forum) going back and forth between doctors with no answer. Even though I don't have a 100% diagnosis I do feel better. The gi doctor is calling it probably crohn's and is treating me for that.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 11/16/2007 12:26 PM (GMT -7)   
Hey, stop imitating my state of health! Not only does this sound like Crohn's but you could be my twin!! Those are my main problems as everyone here can tell you. I hope not, but I wouldn't bet on the probability...
Anyway, welcome to HealingWell!

Sincerely,
Matthew
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