You mentioned chronic ischemia in another post. If that is a factor do you know if it is possible to not see it on pouchoscopy? As in could it be on the outside of the pouch and not go through the entire wall of the pouch?
Thanks!
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Ischemia is not something you necessarily see, but a potential cause for pouch complications, particularly those that don't seem to respond to typical treatment. These can be refactory cuffitis or pouchitis. Ischemia is reduced blood flow and can be caused by complications of surgery. Te reduced blood flow can cause an inability to maintain a healthy mucosa or to heal well. The fact that it is not something specific to see on scopes or imaging makes it difficult to diagnose. Often it is diagnosed by eliminating other causes.
This abstract describes a type of pouchitis that is not symmetrical that suggests ischemia. This is just one description.
http://www.ncbi.nlm.nih.gov/pubmed/19998461
Jan
This abstract describes a type of pouchitis that is not symmetrical that suggests ischemia. This is just one description.
http://www.ncbi.nlm.nih.gov/pubmed/19998461
Jan
Thanks for the response. If you can't "see" it how is it dx? The main reason I am asking is because my daughter has had so many problems and this is one thing I have wondered about. When they did takedown they said she had several cm of ischemic bowel removed. She had complications after that and problems since. She is scheduled for surgery the 18th with hopes of finding the cause of her misery.
Jan,
I am also wondering about this issue. Could a recurring stricture contribute to reducing the blood flow to the anal area and cause an inability to heal the anal ulcers? Could straining (due to stricture) when emptying the pouch also contribute to anal ulcers or inability to heal them? None of these specialists seem to have an answers to any of these questions, just 'possibilities'.
In you reference there is a statement that indicates: 'postoperative portal vein thrombi were associated with "ischemic" pouchitis'.
I am wondering if this also adds to my issue as my MRI indicated: 'thrombus within a venous collateral along the left pelvic sidewall'. I am not sure if this clot is in an insignificant vein versus a portal vein. I am guessing it is since my GI and surgeon told me not to be concerned about it.
I am just upset at how they can treat UC with medications, as they did mine for 25 years, and now they cannot control the lousy 2 centimeters of supposed anal disease. I had this surgery for supposed LGD and it was determined there was NO LGD on final colectomy. Now, I have 2 or less centimeters left of the cuff that is non-responsive to any rectal medications which means I may have to resort to more surgery.
This whole situation makes my blood boil as I feel if I had a GI that was not such an alarmist I would not be where I am today. My old GI retired and NEVER suggested jpouch surgery in the 25 years he cared for me and I later found out he has one himself with no issues. I may still have my diseased colon today, which I would take any day over this jpouch and all it's problems it has caused me, if I were still under the care of my prior GI.
I know I cannot look back I am just trying to stay in one piece and keep sane as I move forward. I am bracing myself for facing
the prospect of additional surgery, another ostomy for three months, additional scars, my fifth abdominal surgery (including 2 c-sections) and another year or so out of my life; all which may or may not take care of my current issues.
Add to that I need an endometrial biopsy that they cannot do until Jan 16th and with my luck
I may also be facing removal of my uterus based upon those results.
I am also wondering about this issue. Could a recurring stricture contribute to reducing the blood flow to the anal area and cause an inability to heal the anal ulcers? Could straining (due to stricture) when emptying the pouch also contribute to anal ulcers or inability to heal them? None of these specialists seem to have an answers to any of these questions, just 'possibilities'.
In you reference there is a statement that indicates: 'postoperative portal vein thrombi were associated with "ischemic" pouchitis'.
I am wondering if this also adds to my issue as my MRI indicated: 'thrombus within a venous collateral along the left pelvic sidewall'. I am not sure if this clot is in an insignificant vein versus a portal vein. I am guessing it is since my GI and surgeon told me not to be concerned about it.
I am just upset at how they can treat UC with medications, as they did mine for 25 years, and now they cannot control the lousy 2 centimeters of supposed anal disease. I had this surgery for supposed LGD and it was determined there was NO LGD on final colectomy. Now, I have 2 or less centimeters left of the cuff that is non-responsive to any rectal medications which means I may have to resort to more surgery.
This whole situation makes my blood boil as I feel if I had a GI that was not such an alarmist I would not be where I am today. My old GI retired and NEVER suggested jpouch surgery in the 25 years he cared for me and I later found out he has one himself with no issues. I may still have my diseased colon today, which I would take any day over this jpouch and all it's problems it has caused me, if I were still under the care of my prior GI.
I know I cannot look back I am just trying to stay in one piece and keep sane as I move forward. I am bracing myself for facing
the prospect of additional surgery, another ostomy for three months, additional scars, my fifth abdominal surgery (including 2 c-sections) and another year or so out of my life; all which may or may not take care of my current issues.
Add to that I need an endometrial biopsy that they cannot do until Jan 16th and with my luck
I may also be facing removal of my uterus based upon those results.
As mentioned, ischemia seems to be diagnosed largely by eliminating other causes of the trouble.
In regard to the stricture, it is probably more likely that the stricture is caused or worsened by the ischemia, rather than the other way around. But, the stricture can cause fecal stasis and make the pouch and cuff more susceptible to inflammation. So, it is sort of a chicken and the egg scenario.
You can make yourself crazy with what-if scenarios, but I will tell you a few things in case that it might help you make peace with your choice. I don't know how many times you had biopsies positive for LGD, or if it was just the one time before your surgery. Dysplasia can be changeable and colectomy for LGD can be controversial, especially since there is by no means any guarantee that LGD will advance to HGD and then cancer.
But, what is known about dysplasia in the presence of UC is that it is a cause for suspicion of future or even concurrent cancer. That is because cancer that arises from UC tends to be from flat lesions, not the typical polyps in normal colons. They can go unnoticed during colonoscopy until they are in advanced stages. They do not even necessarily arise from the dysplastic tissue, but from seemingly normal tissue. Early cancer is sometimes found in colectomy specimens that was not suspected. The only warning signs we get are the LGD and HGD in biopsy specimens.
If you had pancolitis of 25 years since diagnosis, the cancer risk was high. You may think your GI was being an alarmist, but he was following current standards of care. Of course, the final decision is always the patient's... I had about 24 years since my pancolitis diagnosis, mostly in remission. I had planned on having a prophylactic colectomy the next year, but went into a refactory flare that made more urgent than elective. I had no dysplasia and no cancer on the final pathology. I was grateful for that.
http://www.ssat.com/cgi-bin/colitis.cgi
I've had lots of complications, including chronic cuffitis, but eventually managed to get things under control. I hope the same is true for you. I admit, the ischemia issue is quite vexing. The longer the j-pouch is around, they seem to be getting a better handle on what can go wrong.
The portal vein is huge, as it is the main vein from the liver, unlike the little collateral on your MRI.
Jan
In regard to the stricture, it is probably more likely that the stricture is caused or worsened by the ischemia, rather than the other way around. But, the stricture can cause fecal stasis and make the pouch and cuff more susceptible to inflammation. So, it is sort of a chicken and the egg scenario.
You can make yourself crazy with what-if scenarios, but I will tell you a few things in case that it might help you make peace with your choice. I don't know how many times you had biopsies positive for LGD, or if it was just the one time before your surgery. Dysplasia can be changeable and colectomy for LGD can be controversial, especially since there is by no means any guarantee that LGD will advance to HGD and then cancer.
But, what is known about dysplasia in the presence of UC is that it is a cause for suspicion of future or even concurrent cancer. That is because cancer that arises from UC tends to be from flat lesions, not the typical polyps in normal colons. They can go unnoticed during colonoscopy until they are in advanced stages. They do not even necessarily arise from the dysplastic tissue, but from seemingly normal tissue. Early cancer is sometimes found in colectomy specimens that was not suspected. The only warning signs we get are the LGD and HGD in biopsy specimens.
If you had pancolitis of 25 years since diagnosis, the cancer risk was high. You may think your GI was being an alarmist, but he was following current standards of care. Of course, the final decision is always the patient's... I had about 24 years since my pancolitis diagnosis, mostly in remission. I had planned on having a prophylactic colectomy the next year, but went into a refactory flare that made more urgent than elective. I had no dysplasia and no cancer on the final pathology. I was grateful for that.
http://www.ssat.com/cgi-bin/colitis.cgi
I've had lots of complications, including chronic cuffitis, but eventually managed to get things under control. I hope the same is true for you. I admit, the ischemia issue is quite vexing. The longer the j-pouch is around, they seem to be getting a better handle on what can go wrong.
The portal vein is huge, as it is the main vein from the liver, unlike the little collateral on your MRI.
Jan
As always, thank you Jan. Knowing you have also dealt
with chronic cuffitis and have been able to manage on meds, albeit biologics, is encouraging.
I knew the risks with leaving my colon intact and understand why my GI was pushing for the surgery. He felt I was an excellent candidate and would do great with the surgery (who knew?). I do have colon cancer on my mother's side and you are correct in that after 25 years on mostly left sided UC, I was at a high risk of developing cancer eventually. I just know my function with my diseased colon was so much better than it is now with a jpouch, the surgery that was supposed to cure me of my woes.
with chronic cuffitis and have been able to manage on meds, albeit biologics, is encouraging.
I knew the risks with leaving my colon intact and understand why my GI was pushing for the surgery. He felt I was an excellent candidate and would do great with the surgery (who knew?). I do have colon cancer on my mother's side and you are correct in that after 25 years on mostly left sided UC, I was at a high risk of developing cancer eventually. I just know my function with my diseased colon was so much better than it is now with a jpouch, the surgery that was supposed to cure me of my woes.
Actually, the biologics were for my arthritis, not the cuffitis. The complete clearing of the cuffitis when I started using biologics was just a happy side effect! But, I still take the Azulfidine (again mostly for the arthritis), Imodium, Vicodin, probiotics, vitamin D, calcium, fish oil, and blood pressure medication. I also have chronic dry eyes that I take Restasis (cyclosporin drops) for.
But, I can relate all too well how much aggravation 2 cm of rectal cuff can cause. I imagine its location, right next to the anal canal is the reason.
Try not to be too discouraged. Think of it this way, your diseased colon could have gone "postal" at any time, like mine did, out of the blue. I wound up having surgery in a pretty debilitated state. But, I guess that scenario saved me from second guessing myself.
Jan
But, I can relate all too well how much aggravation 2 cm of rectal cuff can cause. I imagine its location, right next to the anal canal is the reason.
Try not to be too discouraged. Think of it this way, your diseased colon could have gone "postal" at any time, like mine did, out of the blue. I wound up having surgery in a pretty debilitated state. But, I guess that scenario saved me from second guessing myself.
Jan
My question was pretty general, but cuffitis/pouchitis hasn't been the issue. It has been anal pain and intestinal pain.
There were complications after step 2 (of 3) with obstructions, pain, and then after step 3, a large abscess with more pain and obstructions. She had "ischemic" bowel removed during step 3 and I wonder if there is more in there causing the continued issues. That is why I was asking if you can't tell by "looking" at it, how do they tell? Does it become necrotic and that is how they tell? Maybe I need to research this to better understand.
We are just hoping SO badly that surgery finds "something" that explains all the misery of the past 1 1/2 years. Or at the very least doesn't make matters worse.
There were complications after step 2 (of 3) with obstructions, pain, and then after step 3, a large abscess with more pain and obstructions. She had "ischemic" bowel removed during step 3 and I wonder if there is more in there causing the continued issues. That is why I was asking if you can't tell by "looking" at it, how do they tell? Does it become necrotic and that is how they tell? Maybe I need to research this to better understand.
We are just hoping SO badly that surgery finds "something" that explains all the misery of the past 1 1/2 years. Or at the very least doesn't make matters worse.
Well, with a history of ischemia, I suppose it could still be an issue. But, unless there is evidence such as pouchitis in defined areas, scoping would not be of value. MRI or CT scans may indicate areas of reduced blood flow, since IV contrast is used. Abominal pain can be difficult to pin down, and since there has been extensive prior abdominal surgery, adhesions can be the primary source of pain. These may not be evident on imaging.
Necrosis would be the result of more than just ischemia. That would be from complete arterial occlusion, like from a blood clot. Ischemia leads to tissue that is less than robust, but still viable. It occurs in varying degrees. It can be the cause of separation of the anastomosis, which is the cause of sepsis, abscess formation, and possible pouch failure.
Hope that helps explain it.
Jan
Necrosis would be the result of more than just ischemia. That would be from complete arterial occlusion, like from a blood clot. Ischemia leads to tissue that is less than robust, but still viable. It occurs in varying degrees. It can be the cause of separation of the anastomosis, which is the cause of sepsis, abscess formation, and possible pouch failure.
Hope that helps explain it.
Jan
Yes that helps a lot, thanks! I guess it makes it makes me feel a little better that going ahead with surgery is the right thing to do. We feel there is no other way at this point to "see" what is going on. There is a suspected brewing infection at the anastamosis due to a leak for one thing, but imaging wasn't real obvious, just suspicious.
Also, she recently has had really bad daily headaches with nausea/vomitting that started the same time a stitch abscess appeared over 4 weeks ago. The stitch abscess was operated on but the headaches have remained--every single day. They have been debilitating and very hard to get under control even with many meds. It makes me wonder if it is all related. Do you think I should let the surgeon know about this? Maybe a quick email is in order.
Thanks again, jan!
Also, she recently has had really bad daily headaches with nausea/vomitting that started the same time a stitch abscess appeared over 4 weeks ago. The stitch abscess was operated on but the headaches have remained--every single day. They have been debilitating and very hard to get under control even with many meds. It makes me wonder if it is all related. Do you think I should let the surgeon know about this? Maybe a quick email is in order.
Thanks again, jan!
Yes, you should let the surgeon know. The headaches could very well be related to the drugs. Unfortunately, migraines can be induced by overuse of pain medications. Seems counterintuitive, but true. It may effect her pain management post op.
http://www.mayoclinic.com/heal...nd-headaches/DS00613
Jan
http://www.mayoclinic.com/heal...nd-headaches/DS00613
Jan