If so, I'd like to ask you some questions. I just found out I have both.
Sally
Sally
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Sally,
My blood tests came back as UC, but we know those are not 100% reliable. I am really not sure at this time. Can you tell me how they diagnosed yours? I have had pretty chronic cuffitis since my takedown about 16 months ago so I am not in the same situation you are in where I was well for a long period of time after jpouch surgery. All my biopsies always have come back as UC, but I h ave never had a small bowel scope which I think I am due for now.
Were you well all this time and then developed the UC in the rectum? Have the biopsies saod crohn's? Do you have pouchitis and have you had it chronically?
This is all so confusing as I also have mild pouchitis and it is chronic also. All my signs point to crohn's disease, but no one has diagnosed it at this time.
Let me know if I can help you in any way. If you share your story, I will fill you in on mine.
My blood tests came back as UC, but we know those are not 100% reliable. I am really not sure at this time. Can you tell me how they diagnosed yours? I have had pretty chronic cuffitis since my takedown about 16 months ago so I am not in the same situation you are in where I was well for a long period of time after jpouch surgery. All my biopsies always have come back as UC, but I h ave never had a small bowel scope which I think I am due for now.
Were you well all this time and then developed the UC in the rectum? Have the biopsies saod crohn's? Do you have pouchitis and have you had it chronically?
This is all so confusing as I also have mild pouchitis and it is chronic also. All my signs point to crohn's disease, but no one has diagnosed it at this time.
Let me know if I can help you in any way. If you share your story, I will fill you in on mine.
Ps. I have never heard of someone having BOTH UC and crohn's.
quote:Ps. I have never heard of someone having BOTH UC and crohn's.
It's possible to have had ulcerative colitis for 20 years, had the colon removed, have a J Pouch for 16 years with no suspicion of Crohn's or evidence of inflammation in the ileum, and then develop Crohn's-like symptoms.
I appear to be such a person.
DJB,
I misinterpreted Sally's question. I thought she meant diagnosed at the same time. I understand she has cuffitis as I do in the remaining cuff and now inflammation in the small intestine so in essence it appears as if she has been diagnosed with both when her initial diagnosis was UC.
It is so difficult to tell with this disease if the initial diagnosis should have been crohn's instead of UC or if IBD is truly inflammation in any area in the GI tract and when you remove one section that has been diseased (such as the entire colon diagnosed with UC), the inflammation eventually rears it's ugly head in some other section of your intestine that is remaining. I feel as if I am in the exact same situation as both of you are and I wonder how many others who were initially diagnosed with UC, will eventually end up with a crohn's diagnosis after having jpouch surgery.
I misinterpreted Sally's question. I thought she meant diagnosed at the same time. I understand she has cuffitis as I do in the remaining cuff and now inflammation in the small intestine so in essence it appears as if she has been diagnosed with both when her initial diagnosis was UC.
It is so difficult to tell with this disease if the initial diagnosis should have been crohn's instead of UC or if IBD is truly inflammation in any area in the GI tract and when you remove one section that has been diseased (such as the entire colon diagnosed with UC), the inflammation eventually rears it's ugly head in some other section of your intestine that is remaining. I feel as if I am in the exact same situation as both of you are and I wonder how many others who were initially diagnosed with UC, will eventually end up with a crohn's diagnosis after having jpouch surgery.
Jeane, I had UC for 20 years and then a j-pouch pull thru in 1995/6 (6 surgeries in 10 months due to complications). The ileostomy didn't work; had to be suctioned by an at home nurse for two months). When I had my first sigmoidoscopy last month, I didn't know I was sick. I had been just "living with it" . . . pain, leakage, butt burn, etc. I was more depressed than anything. The pathology report indicated that I had chronic active inflammation in my j pouch, rectal cuff and designated small bowel. Btw, I have had approx. five obstructions/small bowel resections over the years (as recently as a year ago) and have five feet of small bowel left. Since I didn't have insurance for that last five years (economy) until now, I scheduled the scope as a checkup. I was shocked to hear of the small bowel corrosion they wrote in the report, as I don't know what to expect. . . short bowel syndrome? not getting enough nutrition? need to have pouch removed? cancer? In any event, the doc. prescribed, Rowasa for the last month, cipro and flagyl (which I just finished today) and will have an upper g.i. on Thursday. I have had severe lower back pain since the sigmoidoscopy and taking Norco (325 mg.) as needed. I have no family support, am single, and scared, plus I live in the mtns. in So. Cal (an hour from the hospitial). Basically, I have been house bound for the past month from such bad back pain. That's my story and I am just so grateful to have found this site. I have learned more than I ever thought possible, and I don't feel so alone. I hope you feeling better. I know you have an appt. on the 11th. Sally
It is my understanding as well that you can really only have one or the other. If you are diagnosed with Crohns, then all your symptoms are addressed under that blanket term, and you are no longer considered to have UC. It is true that a percentage of patients initially diagnosed with UC eventually have their diagnosis changed to Crohns, sometimes even many years later, but usually only when other symptoms begin to manifest, as in your case. What is still debatable and remains a source of disagreement even within the medical community, is whether or not in these cases the person always had Crohns, if the UC "changed into" Crohns, or if the patient only later developed Crohns as a completely separate disease. That being said, there are also indeterminant forms of colitis and IBD which present with aspects of both Crohns and Ulcertaive Colitis, and which therefore elude a definitive diagnosis. And as others have mentioned, you can also have UC with some elements that mimic Crohns, without even being assigned a Crohns diagnosis. The simple answer is that quite often, even the doctors aren't sure what to call it.
My personal opinion is that IBD is far more complex than most doctors initially tell their patients. However, I tend to believe that if you are eventually diagnosed with Crohns, it's likely that you probably had it all along, it just didn't manifest as such.
Regardless, as has come up in other threads, at the end of day, the most important thing is getting the right treatment for your symptoms, no matter what term your doctor uses to describe your condition.
My personal opinion is that IBD is far more complex than most doctors initially tell their patients. However, I tend to believe that if you are eventually diagnosed with Crohns, it's likely that you probably had it all along, it just didn't manifest as such.
Regardless, as has come up in other threads, at the end of day, the most important thing is getting the right treatment for your symptoms, no matter what term your doctor uses to describe your condition.
I think Spooky is correct. There are probably a number of different species of IBD that cannot neatly be classified as either Crohn's or UC and are more properly labelled indeterminate. There are some people who don't understand that Doctors struggle to pigeonhole a particular manifestation into one category or another and probably the better Doctors put indeterminate in front because what they are seeing is not neatly tucked into one category or the other. My case is an example.
IBD is more complex than what Doctors tell their patients because, in many cases, patients are not interested in hearing intellectual distinctions and indeterminate diagnoses, they want to hear what is wrong with them. So Docs try and keep it simple in many cases. They assess the intelligence level of their audience and try and play to that level and not overwhelm the patient with nuance. Which is why I think you need to see a Doctor knowing and understanding these issues so he/she has a comfort level in communicating with you if there is any uncertainty in diagnosis.
IBD is more complex than what Doctors tell their patients because, in many cases, patients are not interested in hearing intellectual distinctions and indeterminate diagnoses, they want to hear what is wrong with them. So Docs try and keep it simple in many cases. They assess the intelligence level of their audience and try and play to that level and not overwhelm the patient with nuance. Which is why I think you need to see a Doctor knowing and understanding these issues so he/she has a comfort level in communicating with you if there is any uncertainty in diagnosis.
Good information from you, Spooky and CTBarrister. I am gathering information and making a list of pertinent questions. Thank you so much. Sally