Unspecified or Indeterminate IBD

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SnowDaisy
Regular Member


Date Joined Feb 2006
Total Posts : 422
   Posted 9/23/2009 1:37 AM (GMT -7)   
I still have not seen my GI yet but the results of my biopsy and CT scan have come back "Indeterminate"

My GP sat me down and said that although frustrating that it is yet again not a definitive diagnosis it was good news in as much as the disease I have is mild.
He went through everything with me line by line...

Colonoscopy Findings
In the sigmoid and descending colon there were numerous apthous ulcers. There were quite marked inflammation and erythema at the splenic flexure narrowing the lumen. Despite position change was unable to advance the scope beyond splenic flexure. The rectum appeared relatively normal with a normal mucosa. Biopsies taken on a strip.
? Crohn's Disease.

Histology Microbiology
Six pieces of large bowel mucosa with a normal crypt architecture. The distal two pieces contain occasional lymphoid aggregates with a focal mild increase in a chronic inflammatory infiltrate. The secon most proimal piece shows focal activity with cryptitis. The remaining three pieces are essentially normal. Granulomas are not present. There is no ulceration. There is no dysplasia or malignancy.

CT Findings
Were all ok

For the more medically minded hear....could you tell me how this leaves me?...I understand that it can be called Colitis by the fact that the "colon is inflamed"...but visually it looks like Crohn's but the histology don't add up..............any ideas guys?...

Any ideas you have will help me understand what's going on.

Regards
Snow xxx
6 x 800mg Asacol daily
1 x 30mg Omeprazol
150mg Levothyroxine daily
Psyllium
Pre-biotics
HRT for my sins fo being a woman...lol

Pain meds as and when for back pain...(paracetamol or tramadol)


Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 9/23/2009 7:59 AM (GMT -7)   
Sounds somewhat similar to my findings 2 years ago. In 2006 I had a normal colonoscopy as we tried to figure out the source of my chronic canker sores. Exactly a year later I had another colonscopy with 2 ulcers in the rectum and mild inflammation extending proximally for about 20 cm. No biopsies showed granulomas or other markers to distinguish Crohn's from UC. My GI has gone with the Crohn's diagnosis based solely on the depth of the ulcers in the rectum. I have never had elevated CRP or ESR with blood work and the prometheus test was inconclusive. It's been two years and now I'm on 6MP and colozal. I can't tolerate the 5-ASA enemas or suppositories. I still have regular rectal bleeding and some left sided discomfort at times.

Sometimes it takes several years for the distinguishing histology to show up in biopsies. Good Luck!
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Canasa (1000mg): 1 suppository nightly
6MP - currently at 75mg working my way up......


SnowDaisy
Regular Member


Date Joined Feb 2006
Total Posts : 422
   Posted 9/23/2009 8:07 AM (GMT -7)   
Former58D said...
Sounds somewhat similar to my findings 2 years ago. In 2006 I had a normal colonoscopy as we tried to figure out the source of my chronic canker sores. Exactly a year later I had another colonscopy with 2 ulcers in the rectum and mild inflammation extending proximally for about 20 cm. No biopsies showed granulomas or other markers to distinguish Crohn's from UC. My GI has gone with the Crohn's diagnosis based solely on the depth of the ulcers in the rectum. I have never had elevated CRP or ESR with blood work and the prometheus test was inconclusive. It's been two years and now I'm on 6MP and colozal. I can't tolerate the 5-ASA enemas or suppositories. I still have regular rectal bleeding and some left sided discomfort at times.

Sometimes it takes several years for the distinguishing histology to show up in biopsies. Good Luck!


Thank you Former 58D

Our cases do sound extremely similar...I even have a left handed discomfort...but on CT scan it showed there wasn't anything sinister going on at all.

I'm hoping with the findings, my bariatric surgeon will give me the all clear for gastric bypass now...

Snow xxx
6 x 800mg Asacol daily
1 x 30mg Omeprazol
150mg Levothyroxine daily
Psyllium
Pre-biotics
HRT for my sins fo being a woman...lol

Pain meds as and when for back pain...(paracetamol or tramadol)


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 9/23/2009 9:33 AM (GMT -7)   
Snow, the first dx I ever received (after 7-8 years of test after test) was indeterminate or indeterminable colitis.  I was told that I had symptoms of both Crohn's and Colitis and one test would show one while another test showed another.  At that point, I was so sick that they started treating me with meds, including Remicade, which helped.  Over time, I noticed that my dx changed to Crohn's disease, but I was never really told anything by the dr., just noticed in on my paperwork. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


heatmiser
Veteran Member


Date Joined May 2003
Total Posts : 1671
   Posted 9/23/2009 12:10 PM (GMT -7)   
I was originally dxd with cd in 2003 but latest scope shows uc. I'm sicker than a dog and they aren't sure if they should remove my colon because the dx is so iffy.
Dxd CD in 2003. Scope Aug/09 shows UC.
Meds: Colazal, prednisone, vancomycyn, prilosec, darvocet, bentyl
Currently in bad flare-up


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/23/2009 2:46 PM (GMT -7)   
Crohn's colitis is infact when CD is affecting the colon (where UC typically hangs out), the major differences between CD and UC is with CD there are skipped patterns of inflammation (healthy sections in between inflamed) with UC the entire area will be inflamed, with CD the inflammation can go deep through the mucosal lining, with UC it remains on the surface only (often being the reason why fistulas are not common with UC but instead with CD). Ulcers/polyps occur with both CD and UC...with UC more often than not the rectom is involved (of course nothing is written in stone, one with UC can still have active disease in the colon while the rectom is disease free).

So what is your pattern of inflammation? Skipped/patchy or without patches?
 
Many CD patients get confused when their doc mentions "colitis", often the patient automatically assumes that either their DX of CD has been changed to UC (when infact is hasn't) or they think they now have BOTH UC and CD when infact they don't.
 

There are five subtypes of Crohn's disease, distinguished by the gastrointestinal area in which the disease occurs. While Crohn's disease lesions can appear anywhere in the digestive tract, lesions rarely occur in the mouth, esophagus, and stomach unless there are also lesions in the lower parts of the tract (intestines).

  • Gastroduodenal CD - Gastroduodenal Crohn's disease, which affects the stomach and the duodenum (the highest, or beginning, portion of the small intestine), is often misdiagnosed as ulcer disease. The correct diagnosis frequently is not made until various ulcer treatments have failed, or until Crohn's disease is identified farther down the gastrointestinal tract. Symptoms of gastroduodenal CD include loss of appetite, weight loss, nausea, pain in the upper middle of the abdomen, and vomiting.

  • Jejunoileitis - Jejunoileitis is Crohn's disease of the jejunum (the longest portion of the small intestine), which is located between the duodenum and the ileum. Symptoms include mild to intense abdominal pain and cramps after meals, diarrhea, and malnutrition caused by malabsorption of nutrients. (The majority of nutrients are absorbed in the jejunum.) Fistulas (abnormal openings in the intestinal tract) may form. These can link a diseased area of the small intestine to another area of the intestine or another organ, such as the bladder. Fistulas may increase the risk of developing infections outside of the GI tract.

  • IleitisVIEW IMAGE - Ileitis affects the ileum (the lowest, or last, part of the small intestine). Symptoms include diarrhea and cramping or pain in the right lower quadrant and periumbilical (around the bellybutton) area, especially after meals. Malabsorption of vitamin B12 can lead to tingling in the fingers or toes (peripheral neuropathy). Folate deficiency can hinder the development of red blood cells, putting the patient at higher risk of developing anemia. Fistulas can develop, as can inflammatory masses.

  • IleocolitisVIEW IMAGE - Ileocolitis is the most common type of Crohn's disease. It affects the ileum (the lowest part of the small intestine) and the colon (the large intestine). Often, the diseased area of the colon is continuous with the diseased ileum, and therefore involves the ileocecal valve between the ileum and the colon. In some cases, however, areas of the colon not contiguous with the ileum are involved. Symptoms of ileocolitis are essentially the same as those present in ileitis. Weight loss is also common.

  • Crohn's Colitis (Granulomatous Colitis ) - Crohn's colitis affects the colon. It is distinguished from ulcerative colitis in two ways. First, there are often areas of healthy tissue between areas of diseased tissue; ulcerative colitis is always continuous. Second, while ulcerative colitis always affects the rectum and areas of the colon beyond the rectum, Crohn's colitis can spare the rectum, appearing only in the colon.
 

:)


My bum is broken....there's a big crack down the middle of it! LOL :)

Post Edited (pb4) : 9/23/2009 3:50:45 PM (GMT-6)


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 9/23/2009 8:20 PM (GMT -7)   
Mine was supposedly indeterminate Crohn's Colitis mostly affected in the Terminal Ileum but also in the Colon itself. I don't know...I've just been trying to be really careful. I don't really know what else to do about it honestly :/
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 5 mg, pentasa 2 pills 4x a day, omeprazole in the morning, and a women's multivitamin. I'm also trying a B vitamin complex, but it doesn't seem to be working so I'm considering the shots.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/23/2009 9:08 PM (GMT -7)   
LMills, we've spoken before about you having both UC and CD, but in your sig you have "colitis" written not ulcerative colitis which is more specific since "colitis" alone can mean any of the few different forms of colitis....like collagenous colitis (aka microscopic colitis), pan colitis (which is actually UC as well but the entire colon is inflamed as a result) and antibiotic induced colitis...as well as crohn's colitis (crohn's affecting the colon).


:)
My bum is broken....there's a big crack down the middle of it! LOL :)


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 9/23/2009 10:13 PM (GMT -7)   
They were never terribly specific about that either :/ My one complaint is a lack definitive answers so I make do with the best I can...It's one of those asking often, never getting a real answer...I'm assuming it's Crohn's colitis based on the colonoscopy results and symptoms, but I don't have the money to have anyone tell me at this point. I'm sure I'll find out sooner or later.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 5 mg, pentasa 2 pills 4x a day, omeprazole in the morning, and a women's multivitamin. I'm also trying a B vitamin complex, but it doesn't seem to be working so I'm considering the shots.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/23/2009 10:22 PM (GMT -7)   
Oh, I didn't realize cuz I thougt before you had said that they did infact DX you with UC and with crohn's, I didn't know that it was more of a indeterminant colitis (which is what they usually DX when they're not sure if it's crohn's colitis or ulcerative colitis).

Good news is they treat both UC an CC with the same meds.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 9/23/2009 11:03 PM (GMT -7)   
Thanks for that description of ileitis. My scopes were fine but the pill cam showed patches of inflammation in the small intestine. The blood test was in the equivocal range. My doc told me on the phone I had "ileitis, possibly Crohn's" then changed it to IBS during the office visit. I had the tests because I had unexplained anemia. He got really annoyed with me when I asked a lot of questions and wanted to know why he changed his mind about the diagnosis. I told him that I knew you don't have inflammation with IBS but he wouldn't explain the inflammation. He told me he'd have the nurse give me info on IBS and walked out.

I get a lot of pain in my lower right side and around my belly button. My gyn says my pain is from IBS, my GI says my pain is from adhesions and endometriosis. They each blame the parts they don't work with. I haven't gotten around to getting a second opinion because I was focusing on other health problems but I think I may schedule that second opinion soon.

SnowDaisy
Regular Member


Date Joined Feb 2006
Total Posts : 422
   Posted 9/24/2009 1:11 AM (GMT -7)   
Dagger said...
Thanks for that description of ileitis. My scopes were fine but the pill cam showed patches of inflammation in the small intestine. The blood test was in the equivocal range. My doc told me on the phone I had "ileitis, possibly Crohn's" then changed it to IBS during the office visit. I had the tests because I had unexplained anemia. He got really annoyed with me when I asked a lot of questions and wanted to know why he changed his mind about the diagnosis. I told him that I knew you don't have inflammation with IBS but he wouldn't explain the inflammation. He told me he'd have the nurse give me info on IBS and walked out.

I get a lot of pain in my lower right side and around my belly button. My gyn says my pain is from IBS, my GI says my pain is from adhesions and endometriosis. They each blame the parts they don't work with. I haven't gotten around to getting a second opinion because I was focusing on other health problems but I think I may schedule that second opinion soon.


How very frustrating!...But I can totally empathise your situation...And it is unforgivable for get cross with you when you need some clarification regarding your condition...after all we are not doctors and some of us find it hard to get our heads around these numerous variants of IBD's.

I hope you get your's sorted out...and tell your doctor to have a little more compassion.

Snow xx
6 x 800mg Asacol daily
1 x 30mg Omeprazol
150mg Levothyroxine daily
Psyllium
Pre-biotics
HRT for my sins fo being a woman...lol

Pain meds as and when for back pain...(paracetamol or tramadol)


SnowDaisy
Regular Member


Date Joined Feb 2006
Total Posts : 422
   Posted 9/24/2009 1:20 AM (GMT -7)   
I understand that UC & CD are at times difficult to diagnose definitively...but while they are trying to make up their minds, it's putting my life on hold as this has a huge impact on whether I get the type of surgery I want if I get my surgery at all now...How will I feel if 5 years down the line they tell me it was none of the above?....I'm a travel consultant, but my travel insurance will go through the roof and I resent paying high premiums if I don't have UC or CD...I'm married to an American and we like to get back to the States as often as we can...And what about life insurance?

And what would I do if we decide to move to the States with regards to health insurance (seriously would like some advice here)?...would my premiums be higher than anyone else's?...My husband was US military for many years (now retired) and he says that we would get a good deal with health insurance through the military...

I know I am yet to see my GI, and maybe I was a bit to quick to get my results faxed to my GP...(and he was great at trying to explain though)...but I'm still left in the lurch and I'm fed up with it all..

Snow xx
6 x 800mg Asacol daily
1 x 30mg Omeprazol
150mg Levothyroxine daily
Psyllium
Pre-biotics
HRT for my sins fo being a woman...lol

Pain meds as and when for back pain...(paracetamol or tramadol)


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 9/24/2009 10:27 AM (GMT -7)   
SnowCrystal, there has been another thread going about insurance here in the U.S. with a lot of replies.  But, getting on his military insurance or getting insurance through an employer will be the best bet.  Most insurance companies can't refuse you or charge you higher premiums if you are on a group plan.  If you try to get insurance as an individual, they can deny you coverage or charge you ridiculous amounts if you have pre-existing conditions.  Same goes for life insurance...you should be able to get it through an employer (or the military, if that is one of his benefit options) for the same price as everyone else, depending on your age, though.  But, if you try to get a plan independently, they can deny you coverage or charge you a lot more due to pre-existing conditions.  The health insurance situation here leaves a lot to be desired. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


SnowDaisy
Regular Member


Date Joined Feb 2006
Total Posts : 422
   Posted 9/24/2009 11:09 AM (GMT -7)   
ZenaWP said...
SnowCrystal, there has been another thread going about insurance here in the U.S. with a lot of replies. But, getting on his military insurance or getting insurance through an employer will be the best bet. Most insurance companies can't refuse you or charge you higher premiums if you are on a group plan. If you try to get insurance as an individual, they can deny you coverage or charge you ridiculous amounts if you have pre-existing conditions. Same goes for life insurance...you should be able to get it through an employer (or the military, if that is one of his benefit options) for the same price as everyone else, depending on your age, though. But, if you try to get a plan independently, they can deny you coverage or charge you a lot more due to pre-existing conditions. The health insurance situation here leaves a lot to be desired.


Thank you Zena

That is very helpful...

Zena I am 52, my husband is 54...

As I have never had to live with a health insurance like you guys I can't really comment...the NHS over here has huge flaws but I hate to see it gone...It's too many chiefs and not enough Indians if you know what I mean..

Now I don't want to start an acrimonious debate, but what do you all think about Obama's health reforms?...

Snow xx
6 x 800mg Asacol daily
1 x 30mg Omeprazol
150mg Levothyroxine daily
Psyllium
Pre-biotics
HRT for my sins fo being a woman...lol

Pain meds as and when for back pain...(paracetamol or tramadol)


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 9/25/2009 10:30 AM (GMT -7)   
You know, I was kind of wondering what everyone else here thought about it.  I'll be honest, I really think our system needs a lot of work, but I don't know that they are going about it the right way (from what little bit I can actually find saying specifics of what they plan to do...it's all open-ended answers like, "Ensure that everyone gets insurance.").  I'd like to see more specific actions that they plan to take.  But, I will say that I already pay enough for insurance, medications, etc. and now they want to tax my employer paid benefits so it costs me even more?  Find a way to get everyone coverage without charging me for it...charge the insurance companies and the drug companies...they are the ones raking in the bucks.  My insurance is getting crappier (will cost me more every time I use it) and the premiums are tripling for 2010.  And they want to charge me additional taxes?  Tell me that's fair! 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 

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