Hi Wayne. I posted a reply yesterday but it seems to be flying around in cyberspace. Can't see it anywhere. Anyway, glad that there were no malignancies. You probably need to have a long talk with the doctors concerned. You were pretty lucky that the leakage did not lead to septisemia or something. I think that this is one of the major worries that they have with bowel resections. You have a right to know just what your situation was & is not just try to work it out from a oiece of paper. By the way, dad you mention the little explosions that you had recently?
Love
Liz
Polly, (And Anyone Interested) - About my Pathology Report
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Hi Wayne. Maybe you have acute diverticulitis alone or that plus something else. A 2nd opinion from a pathologist expert in digestive diseases might be helpful, especially if looking for CC or LC or something equally obscure and rare.
To answer your question about my 2nd pathology opinion, first I phoned and spoke with pathologist Dr. Heidrun Rotterdam at Coumbia Presbyterian Hospital (recommended by Dr. Peter Green) and asked if she would review my slides and give me a 2nd opinion (yes). Then I phoned the GI who took my samples and asked who had the slides (the hospital where they were done). I phoned that hospital's pathology department, explained what I wanted to do and they told me what they needed (Dr. Rotterdam's name/phone/address at Columbia and my credit card number to pay for mailing the slides). After that I called Dr. Rotterdam back to let her know the slides would be on the way and she had me fax Columbia's insurance form (available online) to her. I also had to tell her where to send her report and what to do with the slides when she was finished (ie. return them to the other hospital).
Anyone could use Dr. Rotterdam for a second opinion. My total cost was only $30 for FedEx; insurance paid the rest.
Love, Carrie
To answer your question about my 2nd pathology opinion, first I phoned and spoke with pathologist Dr. Heidrun Rotterdam at Coumbia Presbyterian Hospital (recommended by Dr. Peter Green) and asked if she would review my slides and give me a 2nd opinion (yes). Then I phoned the GI who took my samples and asked who had the slides (the hospital where they were done). I phoned that hospital's pathology department, explained what I wanted to do and they told me what they needed (Dr. Rotterdam's name/phone/address at Columbia and my credit card number to pay for mailing the slides). After that I called Dr. Rotterdam back to let her know the slides would be on the way and she had me fax Columbia's insurance form (available online) to her. I also had to tell her where to send her report and what to do with the slides when she was finished (ie. return them to the other hospital).
Anyone could use Dr. Rotterdam for a second opinion. My total cost was only $30 for FedEx; insurance paid the rest.
Love, Carrie
Oma,
I keep saying that I'm almost completely healed, but I never seem to quite get there. The incision is very close to healed, but there's still a small amount of drainage. I no longer have to pack it with gauze, I just wear a pad taped over it, to keep the stuff off my clothes. Probably, in about a week or 10 days, it will be through draining, and it will finish healing.
Liz,
The reason that the surgeons insisted on creating a stoma, instead of just reconnecting my colon, was due to the risk of a leak, or a spill. Obviously, a risk still exists, no matter which way they go about it, but I'm sure the risk would have been much higher, if they had used the other proceedure.
The doctor that I spoke with on Wednesday, said that the "little exposions" were normal, and to be expected. He also mentioned that I would occasionally pass some gobs of mucus, which was exactly what happened, about 10 days ago.
Carrie,
Thanks for all the information. I'll try to arrange something.
Actually, I don't believe that it would be possible to detect any signs of inflammation from MC, at this point, since I've been GF for almost three and a half years now, and I haven't had any MC reactions in quite a while, (I'm pretty sure that the problems that I've had recently, have been caused by the stenosis in my sigmoid colon. Of course, if any indication of inflammation from MC is present, I would certainly want to know about that, also.
That narrowing down, and possible adhesion, definitely did not occur overnight. On the other hand, though, it wasn't there five years ago, because it would have shown up when I had my colonoscopy. There was absolutely no sign of it then, because I watched the monitor myself, and everything looked uniform and normal.
What I would hope to get from a second opinion, would be a description of the characteristics of the pattern of inflammation that was present in the biopsies, and an opinion confirming or denying the presence of diverticular colitis. For that to happen, obviiously, the pathologist will have to be familiar with the markers for diverticular colitis.
Love,
Wayne
I keep saying that I'm almost completely healed, but I never seem to quite get there. The incision is very close to healed, but there's still a small amount of drainage. I no longer have to pack it with gauze, I just wear a pad taped over it, to keep the stuff off my clothes. Probably, in about a week or 10 days, it will be through draining, and it will finish healing.
Liz,
The reason that the surgeons insisted on creating a stoma, instead of just reconnecting my colon, was due to the risk of a leak, or a spill. Obviously, a risk still exists, no matter which way they go about it, but I'm sure the risk would have been much higher, if they had used the other proceedure.
The doctor that I spoke with on Wednesday, said that the "little exposions" were normal, and to be expected. He also mentioned that I would occasionally pass some gobs of mucus, which was exactly what happened, about 10 days ago.
Carrie,
Thanks for all the information. I'll try to arrange something.
Actually, I don't believe that it would be possible to detect any signs of inflammation from MC, at this point, since I've been GF for almost three and a half years now, and I haven't had any MC reactions in quite a while, (I'm pretty sure that the problems that I've had recently, have been caused by the stenosis in my sigmoid colon. Of course, if any indication of inflammation from MC is present, I would certainly want to know about that, also.
That narrowing down, and possible adhesion, definitely did not occur overnight. On the other hand, though, it wasn't there five years ago, because it would have shown up when I had my colonoscopy. There was absolutely no sign of it then, because I watched the monitor myself, and everything looked uniform and normal.
What I would hope to get from a second opinion, would be a description of the characteristics of the pattern of inflammation that was present in the biopsies, and an opinion confirming or denying the presence of diverticular colitis. For that to happen, obviiously, the pathologist will have to be familiar with the markers for diverticular colitis.
Love,
Wayne
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Quite interesting Wayne. About fever though, since I went through this with my kids when they were young too and were always sick with infections. At first, they always would get fevers of over 104, and that in itself would tell that once again they had an infection. This was helpful when they didn't talk yet, but after 9 years of this with Amanda, and 5 years with Melanie, the doctors finally decided, yup they would have to do something. But by that time, neither of them would get fevers anymore, I would know that they were sick because they would start to throw up, and since they could talk by then, that their ears hurt. When I would get them to the doctor, the infections were really bad, but most times they had only shown signs of being sick for a few days. I did not live close to doctors, so hence the delays in getting them in. And since they were seeing different doctors all the time, and in emerg, reports would be delayed getting to my family doctor. I had to demand them sent to a specialist, and a hearing doctor finally. Since Mel was little, they were most worried about her, because we discovered that she was not hearing much and could read lips, Amanda had developed that too. Kids seem to adapt easily, and to them, not hearing right was normal. And I was treated as an over worried young mother. Till the reports came back in. They did end up with hearing loss from the severe infections, and my youngest weighed only about 32-34 pds and was 5 and 1/2 years old, so they put her on antibiotics so that we could bring her weight up so they could operate. It took her more then two weeks to adjust to normal sounds as she had never heard them before and it hurt her ears. But during that time, they no longer had the high fevers. Some doctor told me that it was because their bodies did not fight as well after being sick for so long. And I think that is what happened to me too, as I have had some pretty doozy lung infections and other things in the past 20 or so years, and I would never have a fever, so the doctors could only rely on blood work, or xrays. And now I am getting low grade fever all the time, and still no one knows why. I think it is just because perhaps for the first time my body is trying to fight whats wrong. But I have nothing to back that up. Just my experience's in life. So perhaps your body was at a weak point and was no longer using your body's defences to fight what was happening??? Maybe???
I always take a long time to explain my thinking, but it is just a thought.
About what they say in your reports, it does seem that they didn't fully understand what they were seeing. Thank goodness what they did find was benign. That part is great news. You know the first thing I thought was from reading your report of the foods you were trying out to see how you body would react as you introduced new foods that you obviously missed not having for so long, and I thought drat, there that goes down the drain. As it was obvious that you were just enjoying your food soooo much, it was a shame for that to be interupted. And I haven't checked back to see if you are able to eat more foods that were going to be on your agenda.
The other thing I don't like is that they gave you this diagnosis, and no information on how to live with it??? But doesn't the use of the word 'Acute" mean that they thought it was a temporary condition? That they thought it was a one time thing. And my understanding of diverticulitis, is that it is not that way at all. That it comes back. But it seems that there are some things that would be better for you to look into, because of the long term treatment, I would think anyway.
This was a very sudden thing it seemed, and you said you didn't have much pain at all, not like you should have considering what was going on in your body. And I wish I had your tolerance to pain. I seem to be the other way, although i keep testing it, it still results in more pain.
Because before I had my surgery out west to correct the severe tearing I had from my bathroom adventures, I was in such severe pain at times that when I look back I don't know how I got through it. And I would think that the level of pain you should have had would be at least at that high level. So you much be made of tough stuff. Amazing that you came out of it so well. There was allot of things happening for you not to have that much pain. Interesting about your statements that what pain you did have was in the lower right quandrant. That is where my pain is the worst at all times........ at least I think it was what you said. My memory may have gotten that mixed up, and I am too tired to go back and check all the posts.
Anyway, it will be interesting to hear any new information you come up with. It is pretty interesting when you do get the full reports of what they did during surgeries. I had requested them of my colonoscopies too, and they explain everything in great detail.
Can't wait for the next info U get. All this info helps us understand a little more each time we hear about the different tests and results and discoveries.
Thanks and good luck and Happy New Year by the way.
Gentle hugs
Wendy
I always take a long time to explain my thinking, but it is just a thought.
About what they say in your reports, it does seem that they didn't fully understand what they were seeing. Thank goodness what they did find was benign. That part is great news. You know the first thing I thought was from reading your report of the foods you were trying out to see how you body would react as you introduced new foods that you obviously missed not having for so long, and I thought drat, there that goes down the drain. As it was obvious that you were just enjoying your food soooo much, it was a shame for that to be interupted. And I haven't checked back to see if you are able to eat more foods that were going to be on your agenda.
The other thing I don't like is that they gave you this diagnosis, and no information on how to live with it??? But doesn't the use of the word 'Acute" mean that they thought it was a temporary condition? That they thought it was a one time thing. And my understanding of diverticulitis, is that it is not that way at all. That it comes back. But it seems that there are some things that would be better for you to look into, because of the long term treatment, I would think anyway.
This was a very sudden thing it seemed, and you said you didn't have much pain at all, not like you should have considering what was going on in your body. And I wish I had your tolerance to pain. I seem to be the other way, although i keep testing it, it still results in more pain.
Because before I had my surgery out west to correct the severe tearing I had from my bathroom adventures, I was in such severe pain at times that when I look back I don't know how I got through it. And I would think that the level of pain you should have had would be at least at that high level. So you much be made of tough stuff. Amazing that you came out of it so well. There was allot of things happening for you not to have that much pain. Interesting about your statements that what pain you did have was in the lower right quandrant. That is where my pain is the worst at all times........ at least I think it was what you said. My memory may have gotten that mixed up, and I am too tired to go back and check all the posts.
Anyway, it will be interesting to hear any new information you come up with. It is pretty interesting when you do get the full reports of what they did during surgeries. I had requested them of my colonoscopies too, and they explain everything in great detail.
Can't wait for the next info U get. All this info helps us understand a little more each time we hear about the different tests and results and discoveries.
Thanks and good luck and Happy New Year by the way.
Gentle hugs
Wendy
Hi Wendy,
You may be right about the body's response to pain diminishing after long-term exposure to high pain levels. When I first began having the symptoms of MC, about 6 or 7 years ago, I had, (as far as I could tell), normal pain response. After 2 or 3 years, though, pain was less noticeable. I just assumed that it might be due to chemicals produced as a byproduct of MC reactions, or possibly nerve damage caused by the reactions.
As far as my food options are concerned, I find that I can handle much more volume now, which means that I can eat more fruit and vegetables. Obviously, this is due to the removal of the restriction in my colon, but at any rate, I can now handle more fiber. I haven't tried any lettuce or citrus fruit yet, but most fruits and vegetables work fine.
The extra fiber should help to prevent additional diverticular problems in the future. I hope that it doesn't trigger any MC problems. You're right, I do need to learn what types of food I should be avoiding, as far as the diverticulosis is concerned.
I hope that this new year treats you well, and brings you good luck, also,
Hugs,
Wayne
You may be right about the body's response to pain diminishing after long-term exposure to high pain levels. When I first began having the symptoms of MC, about 6 or 7 years ago, I had, (as far as I could tell), normal pain response. After 2 or 3 years, though, pain was less noticeable. I just assumed that it might be due to chemicals produced as a byproduct of MC reactions, or possibly nerve damage caused by the reactions.
As far as my food options are concerned, I find that I can handle much more volume now, which means that I can eat more fruit and vegetables. Obviously, this is due to the removal of the restriction in my colon, but at any rate, I can now handle more fiber. I haven't tried any lettuce or citrus fruit yet, but most fruits and vegetables work fine.
The extra fiber should help to prevent additional diverticular problems in the future. I hope that it doesn't trigger any MC problems. You're right, I do need to learn what types of food I should be avoiding, as far as the diverticulosis is concerned.
I hope that this new year treats you well, and brings you good luck, also,
Hugs,
Wayne
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.