Newbie: Does This Even Sound Like Crohn's?

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.

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

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!!

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!!

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.