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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Is this likely Crohn's?


02-28-2014, 05:19 PM   #1
littlec1979
 
Join Date: Feb 2014
Location: Arizona
Is this likely Crohn's?

Hello all.
I am a 34 year old female. I recently had a hysterectomy believing my problems were a result of endometriosis and pelvic adhesions but 3 months later the pain remains. I saw a GI doctor who believes I likely have Crohn's and I am scheduled for a colonoscopy in two weeks. All my bloodwork was normal. My pain is very bad and I take pain killers every day. My symptoms are as follows:

-severe pain about 15 minutes before, during and for an hour after a BM
-up to 5 bm's per day. Usually solid.
-constipation other days
-during "flare-ups" I am in constant pain that is in my lower belly and also in my rectal area (interior not exterior of rectum)
-dizziness and nausea
-little appetite and feeling full quickly.
-hospitalization 4 years ago for severe pain and intestinal blockage that cleared up on its own after 12 hours.

The biggest complaint is the pain. Some days-like today-the pain will remain all day or up to 4 days. It feels like a constant horrible stabbing and prior to a bm I am on the floor in pain. I can only compare this level of pain to contractions. When I walk it feels as if someone is stabbing me in rectal area.

After a hysterectomy that seemed unnecessary at this point I am very depressed and desperate for answers. I am not asking for diagnoses only support. Does anyone out there have similar symptoms? Does this sound like Crohn's?

Thank you so much.

Anna
02-28-2014, 09:45 PM   #2
SarahBear
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Hi, Anna! Welcome to the forum!

When you had your hysterectomy, were your ovaries removed as well? Was the endometriosis confirmed? Do you ever notice blood in your bowel movements (if you don't check, please start doing so)?

These symptoms could be Crohn's, yes. However, there are other possibilities. If your ovaries were not removed, it could still be endometriosis. The pain in your rectum could be caused by endo in your digestive tract, as well.

Has your doctor ordered blood work to check for inflammation and vitamin deficiencies?
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02-28-2014, 11:16 PM   #3
littlec1979
 
Join Date: Feb 2014
Location: Arizona
Hi Sarah,

Thank you so much for your response. I have never noticed blood on my bm's. During my hysterectomy I kept both ovaries but had uterus, cervix and fallopian tubes removed due to recurring ovarian cysts and uterine adhesions from two emergency C-sections and pre-cancerous cells in cervix. My doctor is an endo specialist and said during my surgery she did not find a lot of endo but she confirmed it was there. I kept my ovaries because my doctor said they were in great shape. She knew I was having a lot of bowel pain and looked at my bowels and said they had no adhesions or endo. When I went to the hospital 6 years ago the blockage was in my ileum according to a ct scan. A follow up colonoscopy was clear. Also, my GI doctor did test for vitamin deficiencies and inflammation and both were negative. My gut is telling me what you said-that this is likely more endo. Your suggestion of digestive tract endo is very interesting as after I read that I looked up many sites that listed symptoms and most were spot-on. Do you know if a colonoscopy would detect this? Would a ct scan? I am just so tired of being told they found nothing and living in pain and I just am not convinced this is Crohn's. I sincerely appreciate any feedback you can give me.



Anna
02-28-2014, 11:31 PM   #4
mrjohns2
 
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Here's a good link...
Intestinal Endometriosis

It says "It appears that GI x-rays and colonoscopy are not very useful in diagnosing GI endometriosis because the disease usually doesn't penetrate all the way through the bowel, but remains in the muscular wall of the bowel."

It then says "GI endometriosis requires surgery to be properly diagnosed. A laparoscopy is adequate for diagnosing GI disease provided that the surgeon takes time to look at the areas which can be affected. Most gynaecologists do not look at the intestines very closely so many laparoscopies are useless for ruling out GI disease."
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Crohn's, Severe Plaque Psoriasis, Asthma, high bp, OCD, and weight
Surgeries: Ruptured Appendix; Hernia Repair post Appendix
Current Treatment: Humira
Other Meds: Vitamin D 6000 iu, 325 mg Iron, B12 Pill, Fish Oil, Multivitamin
Past Treatments: Enbrel, Humira, Stelera, Prednisone (short run)
02-28-2014, 11:38 PM   #5
SarahBear
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With endometriosis, the severity of your symptoms does not necessarily correlate with the severity of the condition itself. A lot varies on the location.

How did your doctor look at your bowel? Did she do a colonoscopy?

Actually, another surgery might be require to find out if endometriosis is affecting your digestive tract. It's my understanding that it generally isn't detected during a colonoscopy because it's actually on the outside of your intestines rather than the inside. CT scans and MRIs only show endometriosis if it is very severe. The colonoscopy should absolutely be done first, however. Your symptoms could definitely be IBD and the endometriosis be entirely gone. It is something to keep in mind if the colonoscopy comes back clear, however. Definitely mention it to your GI, as well.

We have a thread on endo in our Females Only section. You can find it here, if you're interested.

03-02-2014, 05:35 PM   #6
littlec1979
 
Join Date: Feb 2014
Location: Arizona
Thank you both for your replies, I really appreciate it. At this point I think having the colonoscopy is first and then if that comes back clear insisting my gyno perform an exploratory lap into the intestines is necessary. Take care.

Anna
03-04-2014, 12:37 PM   #7
littlec1979
 
Join Date: Feb 2014
Location: Arizona
Hi all.

Hello-
I am starting to wonder if I am now having a blockage. I am very dizzy, sweaty and nauseous and having constant cramping in the stomach . When I eat (anything) within 5-10 minutes I am in agony. I mean unbelievable pain-on the floor crying. It feels like I am in labor. This pain also feels much like the pain years ago when I did have a blockage. However, these pains are intermittent and last 30 seconds or so. Sometimes they just go away after a few minutes and other times I have an urgent bm (where the pain continues until the stool passes). My blockage years ago went on consistently for hours. I am scheduled to have a colonoscopy in one week to see what may be going on but I think a cat scan may be in order-on advice of my gi. Should I wait it out? Will the colonoscopy or cat scan tell me more? Also, could a blockage go on for approximately 10 days? Thank you so much.

Anna
03-04-2014, 01:59 PM   #8
SarahBear
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Go to the ER immediately. Definitely don't delay if you think you might have a blockage - and if you're in this amount of pain. The incredibly severe pain followed by a bowel movement is common with Crohn's. If the pain coming in waves? Is there any blood in your stool now? Either way, please go to the ER now. Call your GI on the way or once you get there. It's definitely a 'better safe than sorry' sort of situation, so please don't try to wait it out.
03-11-2014, 04:14 PM   #9
littlec1979
 
Join Date: Feb 2014
Location: Arizona
Sarah,

I just wanted to update you and thank you for your reply. I did go to the ER that night and my cat scan was clear. I followed up with a colonoscopy yesterday that was also clear. The GI said he suspects endometriosis in digestive tract or bowels or I think maybe even adhesions from my C-sections. At this point I am so frustrated and tired of going to doctor to doctor. However, I think I will go back to my gyno and having her perform an exploratory surgery to see if she missed anything or maybe even try physical therapy to see if that will help (if it is in fact adhesions).
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