Hi Allie,
I am back from the clinic.
"I had near panic attacks when I had to eat at a restaurant (because I knew pain was soon-to-follow), and even in 5th or 6th grade, I was waking up 2.5-3 hours before I had to leave for school so that I could try to get some relief by going to the bathroom"...that was EXACTLY me, too. I even worried and got near panic attacks when I was not at home and I coul not use our bathroom/toilet, partcularly in holidays. I tried not to eat but nonetheless the longer I had no bowel movement at all the more I became incredibly nauseaus. And I tried to hide all my problems which took much force.
I also got up at least 2 hours prior to going to school spending the time with trying to get a little bowel movement for a little relief. If this failed I aleady knew at the beginning of the day that the day will be really bad and i wished being able to just skip the day.
The narcotic docs who do the immonoglobulin therapy were again very kind and understanding and they do seem to have some knowledge about
CIP and its impact on life since they have had three patients with CIP within 30 years. AT least some experience even if it is not much at all.
They are also pretty modest saying that there is no guarantee for improvement but that it is worth to try since they have pretty good success rates with pain patients who however have less complex conditions.
I will have to get at least two further shots, so that they can say if the treatment is effective at all. So far, I have not had neither an improvement nor an initial worsening of my symptoms which can happen during/after the first shots.
I can barely believe in a success although they do not only have good results in relieving pain by this method but also in restoring previously impaired functions. It is not completely understood how this happens but they are doing intensive research for this and their experiences show promising results.
It has someting to do with an impaired barrier of the gut mucosa. Being the gut as the biggest immune organ this may lead to a transfer of gut contents into the blood stream the body then reacts to with an (auto)-immune response. The following neuro-inflammatory processes may lead to altered perception of pain and hypersensitivity and impaired organ function.
The success of the treatment probably depends on the presence of hyperactived mast cells which are a sign of an overacting immune-system. By giving immune-globulin theis hyperactivity can be reduced to normal levels by making the adequate cells dy; the mucosa barrier (which mainly depends on the presence of IgA) is restored so that there is no exchange of gut contents with the blood stream and no production of endogene antibiodies.
You can google for IgA and bacterial overgrwoth and much will come up. It is believed that all patients with digestive issues, especially with CIP, have a lack of IgA which is a consequence of the motility problem. The therapy do not treat the cause for the disease but it can help o reduce symptoms and organ dysmotility by attacking one of the factors that may contribute to the clinical picture.
However, my gut tissue that was analysed in Italy after my ileostomy operation did indeed show absence and not an incresaed presence of mast cells ..the latter would indicate an inflammatory neuropathy which can be an underlying pathology of CIP. But all findings so far do not indicate an auto-immune problem or inflammtor neuropathy causing my condition. It seems more the degenerative type regarding both the smooth muslce and the nerve cells alterations. They said that if this was true then a significant factor if the therapy cannot work but there is nothing else to do than just trying.
Maybe I will know more in about
4-6 weeks. But my patience and my remaining strength do decrease with each day passing by.
I just hope that there may be a chance to get the bladder tissue analysed in Italy, maybe this would be a step forward.
Let me know how your biopsy result is like when it is done.
All in all it was a good expereinces regarding the docs who spent much time with me and are really interested in my condition and even more immportant in helping me but personally I don't see a chance for improving my bladder issues. I do believe that the therapy may have a positive effect on my issues with recurrent infections and the bacterial overgrwoth/mucosa barrier disturbances but I strongly doubt if it can lead to restoration of function and reduction of pain in my case simply because of another patho-mechanism of my CIP.
They however do believe that my bladder problems are part of my CIP and not an own disease like the urologists.
Post Edited (pelztier86) : 6/2/2010 7:08:33 PM (GMT-6)