The GI doc from London wrote back. I am so relieved. To someone who does not have to face psychic misdiagnoses and accusations, it may not be understandable why I was worrying so much. But if one is in the same situation as me, I am sure one will be afraid of saying anything “suspicious”.
Anyway, I guess the reason why he hasn’t written back earlier is that he did not know how he could help me here in Germany. I numerated some names of German doctors from the Neurogastroenterology group about
whom I know that they are pure scientist and don’t have anything to do with clinics or who are “only” concerned with IBS.
Apparently, this got him to be at a loss. He now asked what I would propose and if I was prepared for coming to London to see him. I answered him that at this point it would be most important to get an exact histopathological diagnosis and therewith a confirmation of my bladder involvement for the German doctors. I don’t have an alternative but to go this route if I want to have the actually medically necessary surgery.
This for sure, means a laparoscopic surgery to obtain the full thickness samples of the stomach, small bowel, and bladder.
He said that he would agree to the point that a full thickness biopsy may be helpful in my situation; he offered me to ask a German doctor he well knows if he knows an appropriate surgeon or could refer me there. I’ll see what results from this.
I can just say that I am more than ready to have the bladder surgery even though I am aware of all the potential side-effects and risks. Believe me, I have had enough time to think over this conscious decision and to get me thoroughly informed.
I know that it have to be done unless I won’t risk having kidney failure in the long-term or inducing a long-lasting or irreparable damage to my immune-system, perhaps even auto-immune disease. And I can’t afford to suffer from kidney failure in addition to my already existing huge issues. I know how people look like and live with end-stage kidney disease as I was lying with these patients in one room during my hospital stay for catheter infection/sepsis.
I am fully aware of the fact that a bladder surgery is a huge thing, especially as I already had multiple surgeries. I am fully aware of the fact that there may be greater risks regarding the postoperative function of the “neo-bladder” pouch created from a segment of intestine which is affected by CIP. Usually, one needs 20-50cm of the small bowel depending on the specific type of the urinary diversion.
I am fully aware of the fact that my intestinal function may decline following surgery, even in the absence of troublesome adhesions which I don’t seem to tend to develop that easily. Any resection, particularly of the small bowel, should be avoided in CIP due to the common clinical experience that it may precipitate deterioration of intestinal function and motility. Apart from adhesions aggravating the dysmotility problem, there seems to be an intrinsic, yet unknown mechanism which induces a faster progression of the underlying pathomechansim. Maybe it’s due to nerve damage which definitely occurs in every patient undergoing surgery. Usually, the nerves get better with time, but if a person with dysmotility already has some issues going on in the enteric nervous system, this regeneration process may not occur. But that’s just an idea.
BUT I also know and consider that CIP is usually progressive (and so far, I can confirm this common experience), and that it’s rather a matter of time that my intestinal function/motility will more and more decline and may reach a point where I am unable to be fed through enteral feedings and totally rely on parenteral nutrition. The last stage would be total intestinal failure, with intolerance of parenteral feedings due to liver damage. In this case, there is only the option of an intestinal transplant left.
Knowing all this, I would be glad to have surgery nonetheless. If it helps to prevent kidney damage and reduce the intractable infections and gives me a better quality of life in this respect I would be more than willing to accept the fact that I might pay the price bowel-wise in the nearer of farer future. My intestinal issues are not controllable any way, and if it’s pretty sure that I will get worse with times, it doesn’t matter in my situation if it happens sooner or later. So I want to focus on issues I CAN change and where the treatment could help me reducing the amount of problems (but not necessarily the severity of the remaining intestinal problem). It may sound crazy but it’s the choice between the devil and the deep blue sea; yet one HAS to make a choice and everyone has to do this by own. For me, the dreading kidney issues as well as an auto-immune disease are issues I am really terrified about
. In contrast, I had to learn with my intestinal problems throughout my life-time and I know how life is with that, I know my body very well in this regard. It would be very hard to adapt to a complete new situation with kidney and/or auto-immune problems, perhaps in addition to progressing intestinal issues. That’s another reason why I would be ready to face the worst-case scenario meaning that my condition may rapidly deteriorate following surgery and require total parenteral nutrition. For sure, there is still the option that everything works fine after surgery; in contrast I definitely know that without surgery I will get previously PREVENTABLE kidney damage and irreversible problems with the immune system due to the over the counter use of antibiotics; later on even the risk for developing cancer is high. In addition my social life is non-existing due to the constant drainage problems and handling issues with the catheter. I already had a Hickman line, and thus, I know it’s not too bad unless you don’t get constant infections/sepsis but I think that would be a smaller problem if the permanent source of bacteria, my bladder and urethra, are gone.
Actually, I can't tell this anyone apart from my mother as I know they would not understand my point of view. Especially the docs would consider me as being crazy though it's my way of accepting, handling and facing the situation.
I think that those people can relate who also have to face a similar situation and has to make a decision.
Post Edited (pelztier86) : 2/3/2011 3:46:41 PM (GMT-7)