Total Colectomy 2011.1

Sarah,

thanks for clarifying the rectal resection. yeah i know that in order to be able to create a j pouch they need to leave 5 cm of rectum at least. most drs can't create a j pouch if they can't leave at least that. but just to share with ya'll, i know of one who can do it - a friend of mine from my previous work, her mom had a cancerous rectal tumor and had to have it removed. all drs told her they need at least 5 cm rectum left in order to create a pouch, and in her case they could leave only 2 cm, so they said her only option is an ostomy for life. but she found a great dr who was able to create the pouch even with only 2 cm. she's now a year and a half post op and doing wonderfuly.

anyway, thanks for the explanation. now i understand that with a resection there's less risk for nerve damage - phantom pain. but i don't think any surgeon would agree to do that too. it's just so upsetting, i've been walking around all day today with the feeling of rectal pressure and i hate it. only about a week ago i did an enema and it barely worked. the stoma nurse i talked to told me to do an enema every day for a week with paraffin oil (which doesn't absorb in the intestines). she thinks my rectum is way too dry and the oil should help with smoothing things out. and then after that week, she sais i should do an enema once a week. i can't do that.... i can't be home bound for a whole day every six days.... just don't know what to do.

intersting info about the tube feeding. amazing that ppl can be so active even while hooked up.

i understand that i most likely have some problems with stuck loops etc. i'm sure the surgeries i had changed things in there, but again, drs are not cooporative with me and think that if i'm doing ok with these juices, then everything is fine with me and i have no adhesions. in any case, if i do have adhesions, what can i do about it anyway..?

Allie, go to the surgeon. and maybe he can sit with your parents and explain to them how an ileostomy can help you feel better. maybe it'll help them understand.

Rosemary.... i was hoping to be able to see you this year, but oh well, next year is ok too :)

Tracy, where are you??? you asked about me and now you're gone.

 

yeah, doing what works is the tactic for me too. get my nails done.. that made me giggle.. i have low faith i will find a dr to do this. it'll be a miracle if i do. hey i just thought of something - next time you see your dr for suction, can you ask him if he can recommend/knows of someone in israel who does it? you know they see each other in conferences. the surgeon i saw last week knows my BIL's colorectal friend. they know each other. maybe he knows of someone....? but that is if you feel comfortable enough to ask him. if not, that's ok.

if you call Tracy, tell i said hi.

oh thanks so much Rosemary! i'd be so grateful!

thanks so much Rosemary! i'd be so thrilled if i finally find someone to do my nails ;) LOL

Allie,

WOW, Great appt! Dr. Simmang sounds like a dream doc. Actual information and communication. Way to go girl!

questions that pop into my mind:

1. Chance of chronic nerve pain if you have rectum removed. Not that HE would likely do anything wrong as he sure sounds like he knows his stuff, but that IS a risk with any very LOW pelvic surgery as there are so many nerves in the low pelvis. Ask him % chance you would end up with chronic nerve pain from this. Tell HIM he needs his chrystal ball to answer this. Sounds also like he would respond to a bit of humor.

2. If I were you, I would skip the loop ileo because you are right NONE of the people on here with loop ileo complications are overweight. I have seen Hodaya's and Tracy's pics and they are both slim. I was 99 lbs and 5'7" and my Lahey surgeon decided not to put a loop ileo on me and I was like a skeleton. The complications don't all have to do with weight. There are possible issues with poop back sliding down the wrong opening in the loop and ending up in your rectum which you do not want.

3. Intersting....I guess I do have a modified end ileo according to your docs definition. My small intestine is cut but the lower end is tagged to the inside of the abdomen only 10 cm up from the ileocecal valve (as I still have my colon). So I guess my ileo surgeon was thinking some miracle might happen in medical advancement and that some day during my life time I could be reconnected. I DOUBT that would ever happen, but his heart is in the right place. My end ileo so far so good with no complications as of yet, so I would recommend this one.

4. Traditional end ileo with rectum stapled shut. I would skip this. If the rectum was in place but stapled shut would it not fill with it's own mucous with no escape for the mucous? Sounds like you need more info on this.

So for you based on what you have said that he said, I would vote for what he called Modified end ileo. Different docs use different terminology, but this is what I have and so far so good.

Sounds like you can reapproach him with questions. It is good he is not stampeding you into anything as you are so young. He is the right doc as he is just answering your questions and seems to understand your pain. As you have now established excellent rapport, things are likely to go well with your parents and him.

Re: Lizzie and her PEG tube. When anyone has as many adhesions as she does, actual surgery is actually safer than endoscopic because the surgeons are apt to inadvertently pierce bowel loops with endoscopy as they cannot actually see the adhesions endoscopically. Like my surgeon says, you need your hands right in there. BUT that can create more adhesions, but with Seprafilm or some other adhesion barrier, if they see fit, then that sounds like the safest route. I pray for Lizzie daily.

This is just my input on your situation Allie. And remember, you are not under a time limit. You do not have cancer. Taking time is a good thing. Glad your doc is super!

Rosemary

I just copied my last journal entry on my caring-bridge site.

Wednesday, January 19, 2011 8:52 PM, CET
Searching the professional journals for a possible relationship between my intestinal dysmotility and the new endocrine issues I do find very much information, mainly about multiple endocrine neoplasia type 2 which is induced by a mutation in the RET-gene. This mutation induces development of various neuro-endocrine tumor secreting variable hormones which cause in turn the endocrine problems.


This genetic defect frequently causes intestinal dysmotility of varying degree of severity which is often described as the presenting feature and firs manifestation of the disease. Intestinal dysmotility is caused by pathological changes of the enteric nervous system, either by aganglionosis (total lack of ganglion(=nerve) cells)/hirschsprung's disease (in which even patients with the sporadic form of hirschsprungs disease that is unrelated to multiple endocrine neoplasia (MEN) can carry the RET-mutation, yet in another location of the sequence of the RET gene) or by intestinal ganglioneuromatosis in which enteric nerve cells are mainly hypertrophied (=enlarged) and increased in number.
My immunochostochemical anylsis of the resected large bowel specimen revealed one time changes of the enteric nervous system (hypoganglionosis, which is reduction of the number and size of ganglion cell) when the analysis was performed from German pathologist whereas it revealed a defect of the enteric smooth muscles when it was done by the pathologist of the Italian expert who is one of the leading researchers in the pathology of CIP.However, the tissue samples were of minor quality when they eventually arrived in Italy, whic hampers a firm statement.
In a subtype of hypoganglionosis aslight mutation in the RET gene can be found, too whereas in other cases there is no obvious link with this gene mutation.

It's interesting that I found some articles which described MEN 2 patients with ganglioneuromatosis and severe dysmotility syndroms who exhibited a clinical image of their digestive symptoms and an abnormal contractility of their GI tract during small bowel manometry which showed both neuropathic and myopathic components of the underlying motor defect.

I also had a small bowel manometry which measures the contractility of the the smooth muscles (which eventually cause peristalsis of the gut, together with some other minor but important factors like microflora, hut hormones etc. In this tsudy, my small bowel motility was abnormal and the contractile paatern was suggestive of an intrinsic neuropathy.


Moreover, there is increasing awareness that overlapping syndromes and several variants and incomplete forms of MEN and related genetic diseases do happen, and that these patients may be overlooked due to absence of typical clinical picture or phenotype.
All in all (and considering my endocrine symptoms plus presence of some physical traits described in MEN syndromes), I would have enough reason to go for a a genetoc testing. Yet, the endocrinologists in Germany (who diagnose genetic diseases in general here since there are no clinicicans of genetics - scientists of genetic science and labs do exist but they do not deal with the patient; they just do research and the tests the enocrinologists order) do not have any clue about the possible relation with GI dysmotility and MEN2 by a common gene mutation.

Regarding the possible alterations of the enteric nervous system and the the smooth muscles: They were originally clearly discriminated and categorized in myopathy (damage in the smooth muscles) and neuropathy (damage in the enteric nervous system).
In recent years, as better techniques for analysis of the bowel tissue have become available it has become clear that this strict discrimation is not right and that there are mixed forms (neuro-myopathies) and variants.
Thus, a putative neuro-myopathy could be consistent with my clinical image and my symptoms. However, I have no defenite pathological label due to the minor tisse quality and the lack of competence in terms of pathological changes in CIP of the German docs.
I would need further full thickness samples.


Apart from researching I have had pretty bad days.
I am again suffering from nerve pain which is induced by the over-doses of antibiotics I have to use to have an acceptable degree of bladder/urethral pain.
i had been able to reduce the dosis in the meantime but little is needed to induce a deterioration I can hardly stop; thus I can only take more pills again which automatically brings the nerve pain back.
Moreover, I still have a very bad bout of bacterial overgrowth; I quit trying to clear it up since the microflora is anyway massively disturbed by the antibiotics.
since the last week I have been experiencing a constriction feeling in my intestines. It feels as if soemone clinged around my belly and pressed the air out of me. I know this feeling from my in-patient stay in June/July 2009 when I had a 4 months-trial of tube feedings.
I described this feeling in one of the forums where perople with motility issues have a platform and try to help each other, and some people with CIP did confirm/know this feeling. I guess it's the gut trying to work, but is does not happen coordinatedly.
I wonder if this feeling may ba a preform of my severe spasms in the colon I had. They had started with this feeling, too, andhad been raising then to a unbearable spastic waves. Don't know if this means that my small bowel is deteriorating?

Until one week ago I had not experienced this feeling any more. When I have/had abdominal pain after eating it's mostly of another character. It's directly related to distension and its more of a constant intense pressure, thus I call it distension pain as I can literarily feel the distended bowel loops. The worst pain I ever had were those colonic spasms which had finally developed in the begining of my process toward the end-stage of my colon disease and had been progressing to an almost unbearable condition until my last surgery.

The constriction feeling it's not directly related to eating, at least it does not occure directly after eating. In the last week I have had it multiple times daily whereas I experienced it only on some days during my trial of tube feedings.

Post Edited (pelztier86) : 1/19/2011 4:12:43 PM (GMT-7)

Hodaya,

My contact at Lahey emailed my surgeon and we will have an Israelly doc contact for you soon for that suction. It's not like its that big of a deal. look what Peltz is dealing with above. A suction is like child's play compared to her trying to get help. I am really shocked your doc won't suction and doesn't get why you need it. It never ceases to amaze me.

Rosemary

Jen,

there are several studies which confirm that an end-ileo is the "best" and most effective procedure for people with diffuse dysmotility. It's not a cure, for sure, but it's the easiest way for the small bowel to get rid of its contents: there is no rectum serving as a reservoir and inhibiting distal small bowel motility. this effect of the rectal reservoir function is present in anyone, and is even more present if you have rectal dysmotility

I hope you don't mind me chimming in but I am an adhesion sufferer. It got so bad last year that I too chould not eat and was in and out of the hospital. I refused to go home on TPN so I would just juice and smoothies. The CT Enterography did not show adhesions but the Small bowel series and the wonderful radiogoist found 2 narrowings. ( My surgeon at that point would have gone in anyway if that test came back negative ). I had mine lysed laproscopically, my surgeon went over the whole small intestine and found numerous more-well 6 bowel sugeries can do it. This was last August and have been fine since. I am in NYC so if you can get Lizzie over here for a consult let me know and I'll forward my surgeon's name.

Rosemary, i don't know how to thank you enough... it'll be so great to have a dr to do this for me.

Allie,

i'm amazed at how easily your surgoen agreed to remove the rectum... YAY for you! but please do ask him about the % of risk of nerve damage. that still worries me so much.

between all the other options that dont include removal of the rectum, i don't know which is best between options 2 and 3, but def don't go for option 1 - a loop ileo - it'll be best to avoid having the possibility of stools getting in the lower nonactive loop and rectum.

option 4 is the best, that is if there's no nerve damage of course.

Sarah,

your condition is too complicated for me to understand, esp b/c my english is not good as yours + i don't know much of all the medical profesional terms and it's really hard for me to understand all of it. i know of hirchprungs disease - is it more common in men than women? so the abnomality in your gangalion (sp?) cells doesn't mean hirchprung, right? yeah, so complicated for me.. the pain i have is as if knives are moving through my intestine. the pain is like nonstop all the time (not every day - i get an attack like once-twice a month. sometimes it lasts for only one day, sometimes for 4-5 days straight. on those days i can't eat much if anything) so when i get it, it's nonstop and eating makes it really worse. it feels like the same sort of pain when i had the obstructions (before and after the ileo), but not at the same level, much less, but still very painful. kind of one that makes me double over. do you think i should ask for a laparotomy and lysis? or maybe i shouldn't mess with this and leave things as they are. maybe things can improve on their own? i really hope something is done to help you soon.

Jen, i'm so sorry about the bad experiece you had at the ER. it could be you have slow small bowel and it's most likely you have adhesions that are not seen on a CT scan. before your last surgery you were managing ok, weren't you? i think that maybe it's just too short time after your last surgery and things will settle with time - how long has it been? i think it really could be it, cuz it always takes time after surgeries for things to settle down again.

i can tell you that for me an ileo was a very good choise. i'm doing much better with the ileo. i do still have issues, but they are minor compared to what i've suffered before the ileo (after my colectomy with i/r anastomosis). but i'm not you - you have other different issues, so i can't know if an ileo will help you like it did me. as for me, after the colectomy my rectum didn't work and laxatives didn't help. now with the ileo (6 mons now) prune and pear juices are helping me some. it's much easier for me when the rectum is out of the way. the question is, is your rectum a major factor of your bad simptoms?

Susan, thanks for sharing your story. i'll have to check if we have Small bowel series in israel. glad the lysis helped and you're doing ok now :)

Hoddaya,

as far as I recall it properly, you suffered from postoperative ileus which is common directly after surgery. A postoperative ileus is a functional obstruction, similar to the subileus due to diffuse intestinal motility disorder/CIP.
Was this pain similar to the pain now and the pain from your obstructions after the ileostomy which you say was the same pain?

Some sufferers cannot walk uprightly, as adhesions restrict mobility. Simple movement such as bending and stretching can be compromised..."

I think this could well explain yur isues with walking. generally when I had/have spasms thy increase with walking. It seems as if the additional stimulation of the bowel is harmful cause the bowel just can't do anything with it due to its impired motility/function. Walking just aggravates the pressure on the non-functioning bowel loops and the bowe reacts the only way of which he is still capable:with spasms.
That's my idea but I don't know if you have spasms, too.
The distension pain I described in my previous post may resemble your second kind of pain; I get it almost daily after eating.

Jen, the 15h are the transit time from mouth to rectum including gastric emptying time. As you have gastroparesis like me, you have to consider this delay when interpreting your transit time. You can't actually say what your small bowel transit is, just what your oro-rectal transit time is. If you knew the time your stomach needs to empty you could subtract this from your total transit time.

Your doc is incorrect, sorry. It's true that an ileostomy has no direct effect on small bowel motility and can't alter your situation with adhesions but an ileostomy may indirectly work better than an ileorectal anastomosis for the reason I already mentioned. If you had a deranged rectal function, too (even if you were not diagnosed with rectal dysmotility etc before; this is something which can develop after surgery as well), which hampers the proper function of the distal small bowel even more, an ileo could be definitely of help. No cure, but improvement. One can't predict to which degree this improvement may occur.

Sorry, but it's my experience that most docs no matter where they come from do not know anything about motility issues, some a little bit, and only very few have the full in-sight to these issues as they do nothing but treating motility patients and researching about motility diseases.

Post Edited (pelztier86) : 1/20/2011 4:22:31 PM (GMT-7)