colectomy 2011-2

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Regular Member

Date Joined Apr 2009
Total Posts : 401
   Posted 2/8/2011 11:52 PM (GMT -6)   
Don't know why the other thread got locked.
Anyway, this was my last post:
regarding my issues:
Still have no answer from the doctor the German colleague of the motility doc in London recommended. I am actually frustrated. It took ONE day for the motility doc to get into touch with the German colleague (a scientist) and asked him for a recommendation in my name. I had been in touch with this scientist some time ago, and he was indeed quite nice but could not help me as a pure scientist. Also, I had been aware of one of the two clinics he recommended his UK colleague before and had contact with the responsible doc there.

Well, the seemed to be quite OK there and are the one with the most clinical expertise and knowledge about CIP. BUT in Germany that means that they have seen 6 patients in 20-30 years. And a follow-up cannot be provided.

Anyway, I wrote to this doctor I had had contact some time ago, and I have not heard anything back since then - I mailed her last week.

Don’t know how to take that. Does this mean a refusal, her absence due to vacation, inability to help me or anything different? There it is the big wondering and doubting if one has found the wrong words to describe the situation, that one may have used expressions which may be suspicious of a psychic disorder. I know it from my own experiences on psychic unit where your word were actually reordered and written down that certain phrasing is considered as suspicious. It’s a huge penetration into your privacy but you are even not told about it. Me and some other clever patients found it out, but the others had no clue or did not want to believe it. You are under control each minute in these institutions and everything what you do, where you go and what you say to the doc or to other patients is documented and judged by the personal.

I don’t know what to do where or not I should write her or her chief again. Maybe I’ll try it with the other clinic where I didn’t have any former contact. In the end it may be true that I don’t have a chance but to go abroad.

I also did not hear anything new about the bladder biopsies that are currently analyzed by the German pathologists. Yet, it’s very unlikely that they will be able to find anything due to insufficient techniques and expertise and insufficient tissue quality.

I am just so frustrated. My nerve pain is still not getting actually better, though I have reduced my doses of antibiotics which induced increased bladder pain.

I am so exhausted, both physically and emotionally. Any of my trials seems to end in nowhere.

My only hope is the appointment with clinical genetics department of the same clinic in March. But I guess I will be disappointed again. I wrote a summary of my condition and clinical history and new issues they had asked about prior to the appointment.

I have done further research on the genetic issue. And I think that there is another genetic link that may fit to my new symptoms as well. It’s about genetic defects causing mitochondrial diseases. I have known before that these conditions can actually induce GI dysmotility as well as endocrine and multisystem issues but did not get deeper into this issue. I will write more about this topic within the next days.

I'd Rather Be Riding
Regular Member

Date Joined Apr 2010
Total Posts : 149
   Posted 2/9/2011 1:42 PM (GMT -6)   

Keep the prayers going for Lizzie! Placing the tube went well, but she is still having a lot of pain. They are transitioning her from 24/7 feeds to just running the feeds at night (higher volume because it's a shorter amount of time). Today they are also starting the transition to oral pain meds...pray that goes well and that her body absorbs them! She is still having low-grade fevers, but they're not sure why. CT and x-ray have shown that the tube is ok, but they did see a lot of fluid still in her belly, possibly from infection or her last surgery, or both. She is only 8-or-so weeks post-op.


Sarah, I am so sorry to hear about your friend. I will keep her and her family in my prayers...praying that her family would understand how she is suffering, and praying that she gets the treatment she so desperately needs! I know you are desperate to hear back from the doctors as well...please keep hanging in there! I hope and pray the doctor is just busy, but I also hope you will know quickly if a trip to London needs to happen so you can get there as soon as possible!!!


I think I am making a little ground with my parents, although it is hard to tell sometimes. My mom has been considering retiring, but the other day she was talking about not retiring and taking family medical leave over the summer if I have surgery. I think she is seeing more and more that I am not going to get better on my own, and that I have done everything I can. Pooping is getting harder and harder to do (always incomplete), and I get this strong rebound nerve pain and muscle cramps throughout my whole body. I have noticed my posture getting worse and worse too...the body's attempt at protecting the painful area, I guess. My dad is considerably more resistant. Not too long ago he accused me of being "fixated" on having surgery. I'm not quite sure how that can be because I usually only tell my mom how I am feeling (he can't handle the medical things because he's too squeamish), and we have had maybe three or four conversations about more surgery in the last year. I'm not behaving like a little kid who has the "gimmies" for a certain toy; I just want to feel better, and I'm not sure how that is being "fixated," especially since I have been trying to make this work since I had the total colectomy over three years ago. And I am doing all I can to move towards grad school. It really drives me up the wall when he acts like he knows all about motility disorders (he hasn't done one bit of research, and I know he hasn't read any of the studies my mom or I have). The "if you would just eat normally" speech is getting old! A 64 oz. porterhouse steak and a bucket of mashed potatoes won't fix this!! Grrr...ok, done with the soapbox ;)  


Jen, because your gastroparesis is such an issue, I really would look into the neuro-gastro stimulator (gastric pacemaker) before having ileo surgery. From what I have read about it, and what Dr. Camilleri (enteric neurology specialist at Mayo) told me, they have had great success with the stimulator knocking out gastroparesis nausea. Is your pelvic floor normal, or are there problems there as well?


Boat, sounds like you're making great progress! Keep us posted!



Regular Member

Date Joined Apr 2009
Total Posts : 401
   Posted 2/9/2011 3:53 PM (GMT -6)   
"She is still having low-grade fevers, but they're not sure why" oh boy, don't get WHY THE HECK they don't test her for autoimmune disease where low-grade fevers are VERY COMMON!!
I am starting to HATE the doctors in general in Germany. Yes, I know it's not fair, but all I can experience here in Germany supports and justifies the general mistrust.

Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 2/9/2011 7:12 PM (GMT -6)   

Thanks for update on Lizzie. WOW, sure hope she comes through all this and has some sort of "normal" after all this and some long-term feeding arrangement. BUT, at least this hospital is dealing with her. Yeah, that fever thing is sure baffling. If simple to do I wonder why they don't just test her for autoimmune stuff like peltz says. If it's just a blood draw why not.

Glad your Mom is coming around. That must be frustrating with your dad. Good idea for Jen to maybe check out that enteric neuro specialist at Mayo, that may be more the answer prior to trying ileo or instead of?


I hear your frustration, trust me I do. I thought that only went on in the states! Good luck.

When you write these docs, do you list numbered questions in a short list form? Maybe easier and quicker for docs to read that way. They are all about QUICK here in the US. Likely everywhere. Good luck.


Regular Member

Date Joined Apr 2009
Total Posts : 401
   Posted 2/9/2011 10:28 PM (GMT -6)   
It's tricky to summarize as I need to explain why thsi procedure is needed and that cannot be done without explaining the situation of misdiagnoses psychic accusations etc.
But I try to summarize my main question before my explaining the situation(clinical history.
and it's strange when docs from abroad who receive the same mails do answer despite their potential lenght.
Of course you are right that was an over-reaction. There are indeed very few nice docs like my GI doc or the neuro-urologist but unfortuantely, they can't help me, especially cially in this medical hierarchic system.

Post Edited (pelztier86) : 2/9/2011 8:33:21 PM (GMT-7)

Regular Member

Date Joined Jun 2009
Total Posts : 213
   Posted 2/10/2011 4:58 PM (GMT -6)   
Allie my pelvic floor seems to be ok. My biggest problem right now is feeling full and nausea. Something new started yesterday which I am a little concerned. I am having a terrible burning sensation in my middle to lower abdomen. I have never had this type of sensation that I can remember. It is very uncomfortable and going to the bathroom does not seem to help. Anyone else had this?

If continues tomorrow I guess I will call the GI. By the way the peppermint oil capsules he put me on....joke...does nothing stopped using them.


Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 2/10/2011 10:23 PM (GMT -6)   
Good luck Jen. You do not need pain on top of all you have.

Hi Peltz,

I hear what you're saying about needing to explain so much. My case got so crazy and long and mine was all about scar tissue. What about scar tissue would a surgeon not understand?

Boggles the mind.


Regular Member

Date Joined Apr 2009
Total Posts : 401
   Posted 2/11/2011 10:40 PM (GMT -6)   
I got the letter with the report of what I thought was a report of the result of the bladder tissue analysis. Well, guess what, it was the report from the neuro-pathology but it was completely different from anything I could have imagined. I was ready to get a report saying that there were no obvious changes to the enteric nervous system/smooth muscles of the bladder just as the pathologists don’t have the expertise in analyzing tissue for CIP associated alterations. And there is always the option that no obvious changes can be detected despite presence of CIP.

But I could not have been prepared for what actually had happened: NOTHING but one pretended that something WAS DONE. Obviously, the stained tissue samples of my gut which were also sent to them for a comparison with the bladder tissue were just reviewed. There was no staining and thus real examination of the bladder tissue samples. They just took a look at the stained gut tissue samples and dared to make the conclusion that my bladder could not be affected by CIP since they stated changes to the enteric nervous system consistent with hypoganglionosis (that is few and small ganglion (nerve)cells) and confirmed the finding of the German pathologists. What a big surprise! Ok, I can’t help but to be sarcastic for being able to digest this new stuff. But who could have actually been thinking to get a different finding when the same tissue samples with minor quality are just reviewed? That’s just ridiculous.

Anyway, in their inexperienced opinion bladder involvement can’t occur with neuropathies (damage to the nerve cells) but only in myopathies (changes to the smooth muscle cells). But that’s completely false. First of all, bladder involvement does occur in neuropathies as well yet with a lesser incidence than with myopathies. Second, I do seem to have muscle abnormalities as suggested by the analysis of the most experienced pathologist with regard to CIP since he did additional and specialized staining. Third, they took only three!! samples out of over 130 and reviewed them, without considering that some tissue samples were stained by the expert and some by the German pathologists who used different techniques. They even did not notice the differently stained material. Third, tissue quality was minor and limits the expressiveness; that’s why the Italian pathologist was very cautious with his suggestion of possible enteric myopathy. The neuro-pathologists now did notice the minor quality as well but were ready to transfer their suspected diagnosis into a firm diagnoses although they also noticed some changes of the smooth muscle cells even when considering the possible artificial alteration of the gut tissue. And forth, they don’t seem to have anything heard about mixed conditions, and that more and more mixed forms and pathologies in a single subject are recognized. Such a neuro-myopathy would be possible in my ca especially when considering the mixed clinical picture of my condition having both features of myopathy and neuropathy. And fifth who could have actually been thinking to get an experienced analysis by neuro-pathologists who normally examine brain tissue and tumor tissue there? And sixth, most important: since when one can compare the incomparable? That’s exactly what they have done as neither they took a look at the bladder tissue (which was the actual subject!) nor analyzed it (which was the actual task)

I think they were just overwhelmed by this task and just changed the order of task which said: analysis of the bladder tissue

Thus, the outcome of this is even worse than I could have imagined. It clearly argues against the bladder involvement. This is even worse than a clear finding.

My remaining options have decreased even more. I am trying to get into touch with the German colleague of the doc in London. He is a scientist and does analysis of gut tissue from patients with motility disorders. Maybe he can take a look at and examine the bladder tissue samples if they are usable for this purpose at all.

Second, I seriously consider undergoing surgery to obtain full thickness samples of both the bladder and the small bowel.

On a more positive side of note the chief doc of the responsible doctor of the clinic whom the clinician in London recommended through his German colleague wrote back. His responsible doc was just super busy and she will write back within the next days.
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