Chrons, UC or Proctitis diagnosis?

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sweet39
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 11/7/2007 6:57 PM (GMT -7)   
I am a new member and have been to 2 GIs, one proctologist, urologist, rheumatolgist, and gynecologist.  I.  I have had these sypmtoms for 5 years now.  First it was the gall bladder, then GERD, they found the H-pylori bacterium, and we've gone back and forth with being diagnosed with proctitis, UC or Chrons.  I also developed ulcerated internal hemmorhoids.   I eat, sometimes before I finish my meal, my stomach cramps up, and I run to the bathroom and this is how I live most of my days. Definitely do not have any problems withconstipation but on the other side of the spectrum. Sorry!  It can start as early as 3 or 4am in the morning.   I have blood and mucous in my stools and sometimes the urge to go.   Sometimes the mucous, blood drips or the entire toilet bowl is red from blood.  This is scarey at times, but I have had all kinds of tests, to be told I don't have cancer.  In addition, I also have IC (interstital cystitis) and chronic to severe aches all over my body.  The Rheumatologist thought I may have fibromyalgia (sp?).   I don't know what to do as I have been on asacol (8 per day) and it appears canasa did nothing for me.  I am on aciphex, zantac, urised, elmiron, and have many allergies (flonase, allegra D, singular, asthma inhaler, etc).    I am puzzled because no doctor has diagnosed me. All the marker tests for UC and Chrons have come back inconclusive.  Are marker tests the sure thing? sad They pretty much tell me they don't know what I have.  One says I could have surgery and the other says no way with inflamation inthe rectum.  Is it possible to have Crohns in your lower colon?   If you are lso having the same symtoms I am having, I am in search of answers.  I am a positive, optimistic person and I am destined that this will not defeat me.  If you can respond if you gone through what I have or have suggestions, let me know.  I am posting this on multiple boards to see if anyone can relate.    I am able to manage around it, but it gets frustrating worrying about where the near restroom is at or wondering if anything I eat will cause cramps, Diar.  and a mad dash to the bathrooms.  Let me know.   

Bandanalulu
New Member


Date Joined Oct 2012
Total Posts : 3
   Posted 10/28/2012 11:39 PM (GMT -7)   
Hi,

I am sort of going through the same thing at the moment. I developed proctitis about 6 months ago but prior to that I have been feeling very tired, bloated, cramps and generally unwell. I am, like you, a positive person and it's really getting me down. Doc thought IBS, gallstones, etc. I have had a colonoscopy, endoscopy and ultra sounds (both internal and external) and am currently on antibiotics for helicobactor pylori. Have you still got symptoms? I feel like I'm going mad or that i'm a hypocondriac because all tests seem to come back clear. Please reply as it is so good to know that I'm not going mad and that somebody else is going through this too? I signed up for this forum just to reply to you. :)

minnietoty
Veteran Member


Date Joined Dec 2010
Total Posts : 2425
   Posted 10/29/2012 6:47 AM (GMT -7)   
Hi Sweet39 and Bandanalulu, I'm in the same boat. I started 14 years ago w GERD and H.pylori and it has become chronic. More than 5 years ago, my IBS (which has been since 1997 though t to be IBS) turned out to be something else may be Crohn's, indeterminate colitis coz of severe abdominal pain in the lower right quadrant, D, fever and significant weight loss. My calprotectin markers have been moderately high but other than that all other tests were clean. Also, I have had 3 upper endoscopies, 3 lower colonscopies, an enteroscope and a sigmodoscopy and a number of CTs and MRIs. All showed active infectious ileocolitis but that was not confirmed to be Crohn's. The biopsy of the sigmoidscopy confirmed chronic proctitis.
My GI himself said it was Crohn's, other times he denied it but he told me he is sure it's not IBS.
I have tried all lines of treatment except biologics as I don't have ulcers. The only things that worked w me were pred, methotrexate (severe stomach reaction), 5ASAs and now Entocort.
@Sweet 39. What you're describing is proctitis. What meds are you on? I resumed my rectal enemas as the suppositories did not work. IMO, and out of what I've read, yes, there is Crohn's proctitis and this is what my GI believes since I have problems in my ileum.
I think you have both to see another doc and take opinions. I have seen several GIs other than mine but returned to him as he is the only one who believes that there is something wrong w me.
Keep us posted of how you're doing.
Hope you feel better soon:)
GERD, gastritis, duodenitis, ileocolitis, chronic proctitis and persistent mouth ulcers.
Current meds: Pentasa sachets 4g, Entocort 6mg, Nexium 40 x2, Pentasa suppositories 1g before bedtime, B injections, Ensure
Failed: Azathioprine, Imuran, Methotrexate
Stopped: Budesonide enema and pentasa enema (due to injury)

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 10/29/2012 7:05 AM (GMT -7)   
Sweet39, let's break it down.
 
H.Pylori is a bacterial infection that can cause stomach ulcers.  Once you are treated, you should be cleared of the risk of developing stomach ulcers.  You will still test positive for h.pylori in bloodwork because you will have antibodies to the bacteria left over from your infection, but that does not mean that you have a current infection.  The antibiotics for h.pylori may give you diarrhea.
 
Inflammation in the rectum is called proctitis.  If it is from Crohn's or UC it is still called proctitis.  People with Chron's often have inflammation in the rectum.  People with UC almost always have inflammation in the rectum.  It is usually treated with rectal meds.  You can start with a steroidal enema or suppository, but this should not be used for very long because it can thin the tissue of your rectum.  The best long-term treatment of proctitis is mesalamine, either in suppositories or enemas or both.  If Canasa didn't help you should probably try the enemas as they have more mesalamine in them and cover more of the distal colon.
 
Your body aches are probably due to the untreated inflammation in your gut.
 
Have you had a colonoscopy?
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/12.

Bandanalulu
New Member


Date Joined Oct 2012
Total Posts : 3
   Posted 10/29/2012 10:16 AM (GMT -7)   
Hi Minnitoty and Kazburn,

I'm sorry to hear that the two of you have been suffering from this for such a long time. I'm very new to it all and it's really getting me down so I can only imagine how you both must be feeling.

I definitely don't have GERD as I have never had heartburn and I think that's one of the main symptoms. I have been talking to someone else and they suggested I get tested for Celiac as a lot of the symptoms are similar to what I currently have.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 10/29/2012 10:18 AM (GMT -7)   
Bandalu, what meds are you taking to treat your proctitis?
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/12.

Bandanalulu
New Member


Date Joined Oct 2012
Total Posts : 3
   Posted 10/31/2012 6:09 AM (GMT -7)   
Hi Kazbern, I've been on antibiotics and difene suppositories. I now have other suppositories - scheriproct which is Prednisolone and cinchocaine hydrochloride. I only take them when I have a bad bout and generally they ease the symptoms of the proctitis after a couple of days.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 11/1/2012 7:34 AM (GMT -7)   
Bandanalulu, I don't know what cichocaine hydrochloride is. The best long term treatment for proctitis is mesalamine enemas or mesalamine suppositories. And you must use them regularly for many weeks to get rid of the inflammation. They are not meant to treat symptoms for quick relief.
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/12.
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