Lizzie, I am so sorry for you although I have dreaded these problems before...if it continues to fail you should go on with an ileo which I am convinced would be the best option for all people with dysmotolity issues at least for those whose problems are not confined to the colon.
Here is my story:
Well, although the urological clinic I stayed in almost 2 weeks is one of the best urological clinics in Germany they don’t and/or can’t perform the surgery that was originally planned by another recognized clinic and finally denied by the chief only 24 h before the surgery date (removal of the bladder and creation of a internal reservoir made from bowel tissue) either.
Firstly, they have not seen a patient with intestinal pseudoobstruction and in particular my bladder problems before. They can’t explain them by their common experiences so they have a very hard time to judge them adequately and go ahead with a therapy that involves more than a very cautious and conservative/orthodox approach.
They don’t know what the consequences of a urinary diversion will be like with my condition; there are really no experiences with this combination particularly in adults. However I though they would be a special centre because they dare surgeries no other clinic would take responsibility for.
There may arise problems (in the long-term) that can’t be foreseen but that’s a fact I have been aware of all the time. But I would give it a try since there is no alternative to surgery in my opinion. They said that surgery should only be a last resort. I have the impression that they thought that my case would be easier and more understandable to them and in fact, it wasn’t. My case is very complex since my bladder symptoms do not follow the usual rules and present with a typical clinical picture that is known from neurogenic bladder dysfunctions more common subsequently to neurological disorders etc
They finally proposed that an immunoglobulin therapy should be started to try to alleviate the pain and the bladder dysfunction but I doubt if this will work since the patients they could help this way were still able to urinate at least a bit and did not have a permanent catheter through the abdominal wall.
During my stay I clearly understood that the leading superior doc was overwhelmed and overstrained by my case and my person. He was quite kind in the beginning but he soon turned out to be choleric and excessively convinced of his ability and authority and he had a marked sense for hierarchy. Not a doc you can talk to easily and not a doc who was used to discuss with the patient either.
The more he was overstrained and got test results that were either negative or totally unexpected the more he became unfriendly and did say some very hurting and mean sentences (if I was not able to get rid of the permanent catheter I will get bladder cancer after ten years… apparently, I would do nothing (studies? No studies? How???) but thinking about
my condition and a surgery for my bladder issues, I was too much concerned with my health issues etc). I think it was an expression of his helplessness and excessive demand.
I finally found out that they psychologically tested me without saying this. In addition to the docs a female doc from the neighbor station was sent to me in order to evaluate my psychic sanity, if I was fixated on the surgery and on my bladder issues, if I really had the severe bladder symptoms I told to them. They finally decided to believe (what a bless! ..irony is all what is left) me which I know from the assistance doc who was more empathic and
openhearted than the superior doc. I did never see the chief doc who is an expert although they firstly said that he will personally take care about
my special and difficult case; he did know everything which was going on since there were regular meetings but he did seem to dread a conversation with me which would have given him the possibility of getting a personal impression of my person and my condition….apparently they all have underestimated the difficulty of my case.
I don’t think they get my level of suffering since they wondered why a young woman does want to have a surgery with removal of an organ which is usually feared by the cancer patients they treat by this procedure. So there may be something wrong with this young woman.
The very friendly and understanding superior doc I have had mail contact before and made me look forward to the stay was no more involved in my case - may be due to his engagement which was found to be too empathic by the others.
In terms of the nurses and the clinic and most of the docs I got a very positive impression which makes it even sadder that I probably won’t have surgery there. Surgery would only be the very last resort and it would not be the planned surgery to create a catheterizable pouch within your abdominal cavity (so that you don’t see much from outside and don’t have to wear a bag) but a incontinent urostomy which means that you have to wear a bag. This surgery would be much easier and carry less risk so that they would carry less responsibility they would rather like to pass over to somone else.
On top of all the neurologist I saw and who should evaluate the possibility of an underlying neurological disorder causing my bladder problem (the tests were all negative, it is clear that it is “just” the intestinal pseudoobstruction causing all the symptoms) turned out to be the meanest and most fallacious man I have ever met. He was very friendly and seemed to be really understanding so that I began to trust him..so told him my medical story and difficult way to my diagnosis although I am normally cautious due to my numerous bad experiences with docs.
Then, he stated in the letter that was given to me for my general doc at home that I only suffered from a functional problem and that he wasn’t sure of the diagnosis of intestinal pseudoobstrcution at all. In fact he said that I probably had an eating disorder since I lost much weight and was unable to gain it back by tube feedings but with the help of parenteral feedings (everybody would gain with!!!!) Furthermore I would draw advantages from being sick (this is called secondary value of illness and is often concomitantly diagnosed with an eating disorder; it means for example that you draw attention from your surroundings by your “illness” and like to manipulate family members etc)
I am so fed up and frustrated, even more desperate; I don’t know why everything always ends in the same manner. There is a good beginning and then everything turns out to progressively worsen and I reach the point I already were a hundred times before. If you are a young woman and have been once labeled as anorectic no matter if this diagnosis was right or false than you have no chance…everything will come up again and again…I know all this stupid psychologocal stuff and these accusations from many times...but I could not imagine that this would go on even after getting the proper diagnosis.
I will go back to undergo the immune therapy. This will mean other 4 weeks of waiting and time passing by. After this period you can say if the therapy works at all or not.
Furthemore I underwent a little surgery during my stay to take a biospy and rule ot the presence of some other rare condition. I had horrible spasms due to the catheter that was placed through the urethra in addition to my permanent catheter through the abdominal wall. The suspected diagnosis of interstitial cystities could not be confirmed. I asked if it was possible to send the probes to Italy where my previous bowel tissue was analyzed on the background of the neuromuscular alterations of the condition. It is a very special analyis only done and available in very specialized centres. But they refused to send some probes to Italy since they said they were at least as good as the Italian pathologist but I doubt if they are as good as THIS special pathologist who has been doing research about
intestinal pseudoobstruction since many years.
Allie,
they also stated during my stay that my urethra is spastic/hypertone. So it seems to act like my rectum. I still have rectal spasms and horrible spasms in my urethra. I am convinced that both problems are related and I don't doubt if the extent and severity of the rectal/bladder dysmotiliy will totally show up during testing. From what you describe I am convinced that you have rectal inertia/dysmotility either which worsens your small bowel motility.
You may ask for a deep rectal biopsy which could be collected by an endoscopy under general anasthaesia which will mean a little surgical intervention and could confirm neuromuscular alterations/nerval/muscle degenerations proving the suspected rectal dysmotiliy by giving a pathological correlate. However, the biopsy must involve all layers (aso known as full-thickness biopsy) to evaluate these alterations.
Post Edited (pelztier86) : 5/22/2010 8:15:34 PM (GMT-6)