Atypical for ulcerative colitis

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princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 8/21/2007 11:28 AM (GMT -7)   
I'm experiencing some symptoms that are atypical for ulcerative colitis. I have pain, discomfort and gas over on the right side. My general practitioner thought I had appendicitis. A CT revealed a "thickened bowel wall" on the ascending side of the colon, near where it turns. Flex sig showed no inflammation on the descending side. No bleeding, either.
 
From what I understand, it's rare, if not unheard of, for UC to present on the right side in isolation. I'm wondering if I've been misdiagnosed. Anyone here have a similar experience?
Diagnosed with ulcerative colitis spring 1999
Maintenance dose sulfasalazine
 


nsg121
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 8/21/2007 11:53 AM (GMT -7)   

Princesa, 

 

   I have had a similar experience.  Thus I have been classified as indeterminate IBD.  Two doctors think I have Crohns, two doctors think I have Ulcerative Colitis.  The current GI doctor has labeled me Indeterminate and we'll see how it plays out.  I had the cecum inflamed the first time around but the IBD has shifted to left sided now and the cecum seems fine.  Once in a blue moon I have discomfort on my right side.  Hope this helps!


Indeterminate IBD - 2003

Medications:  Methotrexate Injections 25mg weekly


sdaless
Veteran Member


Date Joined Jun 2005
Total Posts : 1396
   Posted 8/21/2007 12:01 PM (GMT -7)   

I definetley had pain on my right side when first diagnosed.  It hurt so much that when I laid on my right side and tried to turn I had to position myself right.  I don't believe it only pertains to left sided pain.  Hope this helps.

 

Stacy


Current meds are:
 
Asacol 6 pills a day
Lexapro 20 mg once a day
Ativan .5 mg when needed
 
 
 


ucRick
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 8/21/2007 1:15 PM (GMT -7)   

Hello,

My UC has recently only been active on the right (ascending) side of my colon.  When I was initially diagnosed with UC the rectum and sigmoid colon were involved but in my last scope the rectum and sigmoid colon looked clear and the biopsies from that part of my colon appeared normal.  I would recommend that a colonoscopy be done with biopsies so a GI doc can check the ascending part of the colon to see what's going on for sure.

In my last scope high-grade dysplasia was found in one biopsy from my ascending colon so I'm scheduled for surgery on Sept. 5 for a total abdominal colectomy with ileorectal anastomosis, where they re-attach the ileum to the top of the rectum.  I had blood blood in my stool for a couple of days about 1-2 weeks before the colonoscopy, but was feeling ok otherwise.  Also, my GI doc said that the area on the right side of my colon where the biopsies were taken from was a little red, but looked unremarkabe otherwise.  The biopsy that showed the dysplasia was taken as a random biopsy. 

I'm not trying to scare you, but it would be good for you to rule out any problems by having a colonoscopy.

Rick

53 yr old male, UC since 1978
800mg Asacol x 3 daily
Multivitamin
Forteo(for osteoporosis)
600mg calcium + 200 iu Vit. D x 3 daily
Advicor(for cholesterol)


at wit's end
Veteran Member


Date Joined Jun 2007
Total Posts : 565
   Posted 8/21/2007 1:26 PM (GMT -7)   
Was this hidden blood in your stool, or visible blood on the outer part of your stool? Just curious. Thanks.
ucRick said...

Hello,

My UC has recently only been active on the right (ascending) side of my colon.  When I was initially diagnosed with UC the rectum and sigmoid colon were involved but in my last scope the rectum and sigmoid colon looked clear and the biopsies from that part of my colon appeared normal.  I would recommend that a colonoscopy be done with biopsies so a GI doc can check the ascending part of the colon to see what's going on for sure.

In my last scope high-grade dysplasia was found in one biopsy from my ascending colon so I'm scheduled for surgery on Sept. 5 for a total abdominal colectomy with ileorectal anastomosis, where they re-attach the ileum to the top of the rectum.  I had blood blood in my stool for a couple of days about 1-2 weeks before the colonoscopy, but was feeling ok otherwise.  Also, my GI doc said that the area on the right side of my colon where the biopsies were taken from was a little red, but looked unremarkabe otherwise.  The biopsy that showed the dysplasia was taken as a random biopsy. 

I'm not trying to scare you, but it would be good for you to rule out any problems by having a colonoscopy.

Rick


ucRick
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 8/21/2007 1:58 PM (GMT -7)   
It was visible blood.
53 yr old male, UC since 1978
800mg Asacol x 3 daily
Multivitamin
Forteo(for osteoporosis)
600mg calcium + 200 iu Vit. D x 3 daily
Advicor(for cholesterol)


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 8/21/2007 2:54 PM (GMT -7)   
ucRick said...

In my last scope high-grade dysplasia was found in one biopsy from my ascending colon so I'm scheduled for surgery on Sept. 5 for a total abdominal colectomy with ileorectal anastomosis, where they re-attach the ileum to the top of the rectum.  I had blood blood in my stool for a couple of days about 1-2 weeks before the colonoscopy, but was feeling ok otherwise.  Also, my GI doc said that the area on the right side of my colon where the biopsies were taken from was a little red, but looked unremarkabe otherwise.  The biopsy that showed the dysplasia was taken as a random biopsy. 

I'm not trying to scare you, but it would be good for you to rule out any problems by having a colonoscopy.

Surprisingly, my GI said he didn't see the point in doing a colonoscopy, that it would be looking at the "inside of a tube" and wouldn't tell us anything further about the thickening of the bowel wall. I guess a second opinion is in order. If I go to another doctor, this will be my seventh GI since my original diagnosis in '99.
 

Dysplasia? Are you saying they found precancerous cells?


Diagnosed with ulcerative colitis spring 1999
Maintenance dose sulfasalazine
 

Post Edited (princesa) : 8/21/2007 4:01:07 PM (GMT-6)


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 8/21/2007 2:59 PM (GMT -7)   
nsg121 said...

 

   I have had a similar experience.  Thus I have been classified as indeterminate IBD.  Two doctors think I have Crohns, two doctors think I have Ulcerative Colitis.  The current GI doctor has labeled me Indeterminate and we'll see how it plays out.  I had the cecum inflamed the first time around but the IBD has shifted to left sided now and the cecum seems fine.  Once in a blue moon I have discomfort on my right side.  Hope this helps!

Maybe a determination of Crohn's or UC isn't that important in the scheme of things, but isn't the treatment somewhat different?
Diagnosed with ulcerative colitis spring 1999
Maintenance dose sulfasalazine
 


ucRick
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 8/21/2007 3:08 PM (GMT -7)   
Hi Princesa,

Yes, the high-grade dysplasia was described to me as precancerous cells.

Even though it only showed up in one of the biopsies, my GI doc, the 2nd opinion GI doc, and 3 surgeons told me I needed surgery.

Rick
53 yr old male, UC since 1978
800mg Asacol x 3 daily
Multivitamin
Forteo(for osteoporosis)
600mg calcium + 200 iu Vit. D x 3 daily
Advicor(for cholesterol)


quincy
Elite Member


Date Joined May 2003
Total Posts : 29852
   Posted 8/21/2007 4:54 PM (GMT -7)   
There is a form of UC where there's inflammation in the rectum and in the cecum, but with all between clear. Whether or not it becomes ulcerative pancolitis I don't know.

princesa, where exactly is your UC...limited or throughout? Are you saying that you are clear in the rectum as well except with pain/etc on the right side where there's thickening?

Thickening of the bowel wall could very well be CD if I'm not mistaken. It could be that you are misdiagnosed...but...you should be on meds to take care of the inflammation in that area.

I would push for a colonoscopy just to have biopsies done. You could have an infection in that area or inflammation from bowel disease or whatever. I do agree, it's time for another opinion.

What meds are you on at this time?

Welcome to the forum....I hope you find resolve to your situation. Frustrating for you..I can only imagine.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 8/21/2007 5:15 PM (GMT -7)   
quincy said...
 
princesa, where exactly is your UC...limited or throughout? Are you saying that you are clear in the rectum as well except with pain/etc on the right side where there's thickening?

What meds are you on at this time?

My understanding is the flex sig they did showed no sign of disease or inflammation at this time in the rectum and up through the descending colon.
 
A little history: I've struggled with digestive issues all my life. As a child, I frequently complained of "stomach aches" and was often constipated. An upper and lower GI done when I was about nine years old showed nothing.
 
In college, I was diagnosed with irritable bowel syndrome. I was a stressed out Type A going to a tough university, determined to graduate with honors. My diet was high carb, high sugar crap. I had the usual alternating constipation and diarrhea. I was sick alot and was given multiple rounds of broad spectrum antibiotics. I suffered off and on and was given antispasmodics and anti-anxiety meds for several years.
 
In 1999, I came down with a bad case of flu. Again, I was given a powerful antibiotic and immediately became very ill with constant cramping, D, weight loss and bleeding. A flex sig showed bleeding and inflammation in the descending colon - typical of UC. I was extremely ill. A year later, almost to the day, I was back in the ER, bleeding, etc. All very typical.
 
Since that time, I've worked really hard to educate myself and learn to control my condition. It's been a long road, but I haven't had any major flares - and certainly no bleeding - for years. I'm on a maintenance dose of sulfasalazine (Azulfadine), the older version of Asacol. I also take l-glutamine, probiotics and fish oil caps. I eat a mostly gluten and dairy free diet. You might call it a modified SCD. In general, I feel pretty good most of the time and consider myself to be "in remission."
 
This latest episode started suddenly after a splurge meal that included several things I don't normally eat and know are triggers for me. The pain was localized and pretty constant for four days. The position indicated appendicitis, but a CT in the ER showed otherwise. The following day, an endoscope and flex sig were performed and nothing was seen since neither addressed the problem area.
 
Diagnosed with ulcerative colitis spring 1999
Maintenance dose sulfasalazine
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 8/21/2007 5:17 PM (GMT -7)   
ucRick said...
Hi Princesa,

Yes, the high-grade dysplasia was described to me as precancerous cells.

Even though it only showed up in one of the biopsies, my GI doc, the 2nd opinion GI doc, and 3 surgeons told me I needed surgery.

Rick

Wow. I'm sorry to hear that. I hope your surgery goes well and you'll soon be feeling much better!
Diagnosed with ulcerative colitis spring 1999
Maintenance dose sulfasalazine
 


at wit's end
Veteran Member


Date Joined Jun 2007
Total Posts : 565
   Posted 8/22/2007 10:48 AM (GMT -7)   
ucRick, where you having any other symptoms other than the visible bleeding? Like back discomfort, problems with gas, etc? Thanks.
ucRick said...
Hi Princesa,

Yes, the high-grade dysplasia was described to me as precancerous cells.

Even though it only showed up in one of the biopsies, my GI doc, the 2nd opinion GI doc, and 3 surgeons told me I needed surgery.

Rick


ucRick
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 8/22/2007 12:29 PM (GMT -7)   
Not really. It was quite a shock to me when my GI doc called with the biopsy results. I guess the one risk factor I can't control finally got me, which is time with the disease.
Since getting the results I have felt a slight burning sensation on the right side of my abdomen but thought that maybe it was psycosomatic, but it could just be from the mild ongoing inflammation in that part of my colon. I'm really curious to see what shows up in the biopsies from that part of my colon after they get it out.
53 yr old male, UC since 1978
800mg Asacol x 3 daily
Multivitamin
Forteo(for osteoporosis)
600mg calcium + 200 iu Vit. D x 3 daily
Advicor(for cholesterol)


at wit's end
Veteran Member


Date Joined Jun 2007
Total Posts : 565
   Posted 8/22/2007 12:46 PM (GMT -7)   
I have what I call slight stinging sensations in my upper left part of my abdomen but it is either nerve sensations I've been told and believe it or not, gas feels that way inside me. There definitely is gas present when I have those sensations.

sdaless
Veteran Member


Date Joined Jun 2005
Total Posts : 1396
   Posted 8/22/2007 12:47 PM (GMT -7)   

have you been on medication this whole time or did you stop it?

Stacy


Current meds are:
 
Asacol 6 pills a day
Lexapro 20 mg once a day
Ativan .5 mg when needed
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29852
   Posted 8/22/2007 1:10 PM (GMT -7)   
at wit's end said...
I have what I call slight stinging sensations in my upper left part of my abdomen but it is either nerve sensations I've been told and believe it or not, gas feels that way inside me. There definitely is gas present when I have those sensations.

I can relate...and for me, mostly, it's from food intake.  gassss..


*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 8/29/2007 3:32 PM (GMT -7)   
Update: Saw the new doc today for a second opinion. He agreed a colonoscopy and biopsies are in order and that the symptoms are not typical for UC. He said a large percentage of IBD patients have their diagnosis switched in the first 5-7 years of the illness from UC to Crohn's or vice versa. I thought it interesting he also said they're discovering more and more that Crohn's and UC are not so much separate entities and there is some overlap. (This is a nationally acclaimed teaching hospital, so this may be sort of a new concept.)

Anyhow, I'm scheduled for a colonoscopy Sept. 18 and have a follow up appointment the first week of October. As usual, there was no discussion of complimentary therapies - probiotics, fish oil for inflammation, etc. Disappointing, but not unexpected.
Diagnosed with ulcerative colitis spring 1999
Possibly misdiagnosed
 
Maintenance dose sulfasalazine
Probiotics, l-glutamine and fish oil caps
 
 

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