UPDATE-EMERGENCY: I'm gong to need my loop ileostomy turned into a permanent ileostomy? Help...

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JCatGuy
New Member


Date Joined Oct 2006
Total Posts : 5
   Posted 5/24/2009 6:11 PM (GMT -6)   
Hello all, (PLEASE SKIP TO TO THE UPDATED PART) BELOW THE TOP!  THANKS
    I haven't a clue, why, after the surgeon initially planned to give me a permanent ileostomy, by doing an open surgery...I was severely impacted (top to bottom, had 1 movement in 30 days, and that was with High Tap water enema, but I wasn't eating and had dropped over 100lbs)...but, I mean I ate, just as much until the pain made it impossible.  
     Okay, I awaken from surgery and I noticed the huge cut I was expecting to see, from top of pelvis to below rib cage. 
     He explained he needed to do open surgery to try to get the impacted stool how w/gastrografin, or then, manuals squeeze it out, or resect, or pull out entire colon.  I awoke and I was still in tremendous pain (as in needing to go to bathroom) but now I had ileostomy.  They kept me over 5 weeks, trying all kinds of techniques to clean my large intestine (going in through stoma and injecting a gallon of golytles, several times, and gastrografin, but, w/prolopsed rectum and hemmorhoid, and hardened stool...hardly anythning came out....but once.
    Okay, now it's 4 months...and one nurse said, "you have an odd shaped stoma"...went to my appointment to surgeon and he explained it was a loop ileostomy and he suggested to have a permanent one.
    I had to hold my tongue, because "that was the plan"!
 
So I'm suffering everyday, with partial blockages, and my belly is swollen as I gained 30 lbs, and then it began that eating started to hurt as badly as before surgery.   Surgeon said, "only way to end your suffering is to turn the LOOP into an END stoma ileostomy.
 
    Has anybody ever had that done...had a loop and turned it into an End Ileostomy?  If so, please...can you tell me how the procedure went...recovery...any information you may have from a friend or third party...cause I'm terrified.
 
    Surgeon is fearful to do it "right now' as he thinks I'm too weak to withstand the surgery also I have a prolapsed stoma...and on top of that, I have a double hernia...much worse on my left side of lower belly than on my right side.
 
    I'm in so much pain...he has me on pain meds.
 
    He even sent my visiting nurse, an "irrigation kit", normally reserved for colostomy's not ileostomy's...and that worries me too; but I have to do something as often I can eat and only black water comes out all day....once 3 days went by like that and i was just about to go to ER when it finally released, and stool filled up the bag several times...
 
    (on top of everythign, my prostatitis is actiing up severely, sometimes I can't tell if it's my rectum or prostate gland which is hurting so much...but this is a nightmare.
 
     Anwyay, any information that anybody can send to be about:
1.  Turning a loop into an end (permanent) ileostomy
2.  Irrigating an ileostomy when it's blocked
Or any other comments would be most appreciated!
 
               Thank you so much, Jay
 
UPDATED: 12/7/09  PLEASE READ!
UPDATED:
    My life has gotten so severe, I am near death.  As suggested, I should've swtiched Surgeon's...but w/him being the "Chief Surgeon" at major hosptial in NYC, and I live in outer boroughs, where the care is awaful, I stuck it out.
    He told me about this double hernia...but it meant nothing to me, and he promised to turn it into full ileosotmy, take out my rectum in 3 months if I gained more weight.  I had severe "Colonic global Inertia". 
    Okay, I went to him last week...I can barely walk...in fact, I can't even put the ileostomy on anymore, because my belly, I don't know if it's from lipidystrophy (accumulation of fat in lower abdomen; from certain meds of another illness), or the colon which is still in me dropped...but, whatever the case, the Hernia...I begged him, "PLEASE FIX THE HERNIA AT LEAST"...between the pain in the rectum, and not able to put on bag tight (as soon as i put it on, everything stops, I have to loosens, and even go as far as basically hold in place all day (Except at night)...and then it leaks...the pressure of all that glue, w/the stomahesive strip....FEELS LIKE I AM HAVING open SURGERY 24/7.
    Pain meds...was his answer.  But then, w/all the pain meds...,can't urinate...i get blocked, when blocked, can't eat...bottom line.
     When I went into hopstial for surgery and was sent home 5 weeks later, for the wrong thing, the loop, instead of the full...I guess he didn't believe I was that impacted;I even have evidence in an email his nurse wrote, 'that it would be FULL open SURGERY" and he wrote, "it's possibly reversible" (so, I didn't know anything back that...but, maybe that should've clued me to ambition to do the loop, because you cannot reverse a REGULAR FULL NORMAL Ileostomy; can you?  That's a question?
     I don't care about lawsuits...I don't care about anythijng anymore...but I know I Initially gained 25 lbs after surgery to 142 (I"M 6'1", used to weight well over 200's)....but then lost ability to "go".
     Now, I'm back down to 129 lbs...can't eat, drinking also expands my stomach...and basically, i've never suffered so much in life.  AND NOW HE WON"T:
A.  TURN IT INTO FULL NORMAL STOMA/TAKE OUT RECTUM (which is killling; kILLING ME)
B.  HE WON'T WON"T EVEN REPAIR THE HERNIAS...as he said, "Not until you gain weight and get stronger">.....i said, "HOW CAN I GAIN WEIGHT, WHEN EATING STRETCHES MY BELLY LIKE A KNIFE". 
This was 2 weeks ago. Family, friends tried to call him...finally, family spoke with him...and in his "cold, heartless tone"...sorry, but HE's too weak right now for surgery; he may die.  BUT I"M DYING FROM PAIN....I'm DYING FROM WHAT FEELS LIKE A TANGLED/BLOCKED ILLEOSTOMY and the only way I food out "when I do eat?  I have to take my ileostomy (I have the flange kind)...is to stick a warm wet QTIP, deep into stoma, and out comes bubles of it...then it stops...PRESSING ON BELLY< terrible for the hernia...otherwise, no matter how much liquid I drink...I even try w/the liquod an sugars (dumping syndrome)......NOTHING gets it out anymore, and my belly is growing larger and larger, as i lose more and more weight.
      PLEASE SOMEBODY........TELL ME WHAT TO DO.   I've also developed SEVERIST URINE RETENTION/some kind of strange syndrome maybe from all the pressure on prostate...too much desire, but unable to release it...LIVING HELL...........so it's developed into so many problems...that i don't know even what to say anymore. 
      I go to ER, they say, "you shouldn't go to ER for these things, but your main MD"...and the SUrgeon, says just the oppsite...that, i'll die from surgery.................TRAPPED.  WEAK.  And I was bertter off...using the the high enemas, although they didn't do much...it was NOTHING LIKE THIS!  The surgery was supposed to set things right.....not worsen everything. 
      I AM TERRIFIED.     I AM IN PAIN.  I CAN"T SLEEP...except in daytime..........everything i s working against me........and i don't know WHY THIS IS HAPPENING TO ME>............JCATGUY
 

Post Edited (JCatGuy) : 12/7/2009 12:39:59 AM (GMT-7)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/24/2009 9:44 PM (GMT -6)   
im sorry i cant help you, but just wanted to say i wish you luck in your surgery

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/25/2009 6:20 PM (GMT -6)   
I don't have any answers for you but I would suggest a second opinion...I hope things get better for you!

JCatGuy
New Member


Date Joined Oct 2006
Total Posts : 5
   Posted 5/31/2009 8:16 PM (GMT -6)   
Hi,
    Thanks for your concern...I only wish I found someone on this board w/a similar issue w/thieir ileotomy...so I could have an idea of what's ahead of me...but, ...well, you never know....................Take good care, Jay

jackarat
Regular Member


Date Joined May 2009
Total Posts : 29
   Posted 5/31/2009 9:49 PM (GMT -6)   

i am so sorry you are having to suffer so much it must be awful for you , i cant offer you any help either except i would seek a second opinion as soon as you can , good luck hope you get some help soon

jackarat


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 6/2/2009 10:51 PM (GMT -6)   
Well, it's not a similar situation, but I have had both....

First I want to say that what a jerk your dr. sounds like. Couldn't he have told you B4 your surgery that HE changed the plan. Isn't YOUR final decision what gets done (since it wasn't an emergency). I would be so mad if I were you. I'd find a different surgeon......
Ok, got that off my chest.

I know I've told this story on this forum many times, so the regulars will probably be bored....but this is for you not them :-)
I originally had an end ileostomy done. It was beautiful. Round and small. *sigh* I probably could get pre cut appliances......
But it only lasted approx. 6 days. Then it failed. Don't know why, because I was already 5 hours away from the original hospital (had it done in St. Louis-I live in KC, MO). I chose that hospital b/c surgeon would do it lap not open.
Anywho....
The surgery failed and my gut was dying and I had leakage and abcesses in my abdomen, yada yada yada. They had to reopen me (so much for laprascopic.....) from stem to stern and remove more small intestine (8 in. that was dying...) and move my ileostomy to my left side. He then gave me a loop ileostomy. It's all crooked and big and ugly. But healthy, and it saved my life. He said the loop is better (in this situation) b/c there is more blood supply so it stays healthier.

I don't know if that was helpful or just a long blahbity story I could've spared you.
I hope it was the former. :-)
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 6/2/2009 11:04 PM (GMT -6)   
Oops.
thought I was done, but I should clear something else up for you.
An "end" ileo does not mean Permanent. It's just a type of ileo.
There are the two types (I think there are only two).
Imagine if you had a water hose.
An "end" is when you hook the hose up to the faucet on the house, or the intestine directly to the site. "Pluging" it in if you will. The end of the intestine into the stoma site. then they sew the edges up and voila!
A "loop" is when you fold the hose over "loop" it, and pull the loop through the stoma site. then they make an incision along the top of the loop to open it up, and sew the sides down. You would then have two holes-an output hole, and an annoying, good for nuthin' mucus hole. You have this one, I think you said.

To make the ileostomy permanent, they'll remove the rest of your colon and rectum. Some of us still have rectum, in case we ever want to be reconnected (by k,j-pouch or ileo-anal anastomosis). Then they'll sew your anal sphincter shut.

I hope this clears it up for you.
Can you take any anti-inflammatory meds for your rectitis/prostatitis?
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


JCatGuy
New Member


Date Joined Oct 2006
Total Posts : 5
   Posted 12/7/2009 1:33 AM (GMT -6)   
UPDATED:
My life has gotten so severe, I am near death. As suggested, I should've swtiched Surgeon's...but w/him being the "Chief Surgeon" at major hosptial in NYC, and I live in outer boroughs, where the care is awaful, I stuck it out.
He told me about this double hernia...but it meant nothing to me, and he promised to turn it into full ileosotmy, take out my rectum in 3 months if I gained more weight. I had severe "Colonic global Inertia".
Okay, I went to him last week...I can barely walk...in fact, I can't even put the ileostomy on anymore, because my belly, I don't know if it's from lipidystrophy (accumulation of fat in lower abdomen; from certain meds of another illness), or the colon which is still in me dropped...but, whatever the case, the Hernia...I begged him, "PLEASE FIX THE HERNIA AT LEAST"...between the pain in the rectum, and not able to put on bag tight (as soon as i put it on, everything stops, I have to loosens, and even go as far as basically hold in place all day (Except at night)...and then it leaks...the pressure of all that glue, w/the stomahesive strip....FEELS LIKE I AM HAVING open SURGERY 24/7.
Pain meds...was his answer. But then, w/all the pain meds...,can't urinate...i get blocked, when blocked, can't eat...bottom line.
When I went into hopstial for surgery and was sent home 5 weeks later, for the wrong thing, the loop, instead of the full...I guess he didn't believe I was that impacted;I even have evidence in an email his nurse wrote, 'that it would be FULL open SURGERY" and he wrote, "it's possibly reversible" (so, I didn't know anything back that...but, maybe that should've clued me to ambition to do the loop, because you cannot reverse a REGULAR FULL NORMAL Ileostomy; can you? That's a question?

I don't care about lawsuits...I don't care about anythijng anymore...but I know I Initially gained 25 lbs after surgery to 142 (I"M 6'1", used to weight well over 200's)....but then lost ability to "go".
Now, I'm back down to 129 lbs...can't eat, drinking also expands my stomach...and basically, i've never suffered so much in life. AND NOW HE WON"T:

A. TURN IT INTO FULL NORMAL STOMA/TAKE OUT RECTUM (which is killling; kILLING ME)
B. HE WON'T WON"T EVEN REPAIR THE HERNIAS...as he said, "Not until you gain weight and get stronger">.....i said, "HOW CAN I GAIN WEIGHT, WHEN EATING STRETCHES MY BELLY LIKE A KNIFE".

This was 2 weeks ago. Family, friends tried to call him...finally, family spoke with him...and in his "cold, heartless tone"...sorry, but HE's too weak right now for surgery; he may die. BUT I"M DYING FROM PAIN....I'm DYING FROM WHAT FEELS LIKE A TANGLED/BLOCKED ILLEOSTOMY and the only way I food out "when I do eat? I have to take my ileostomy (I have the flange kind)...is to stick a warm wet QTIP, deep into stoma, and out comes bubles of it...then it stops...PRESSING ON BELLY< terrible for the hernia...otherwise, no matter how much liquid I drink...I even try w/the liquod an sugars (dumping syndrome)......NOTHING gets it out anymore, and my belly is growing larger and larger, as i lose more and more weight.

PLEASE SOMEBODY........TELL ME WHAT TO DO. I've also developed SEVERIST URINE RETENTION/some kind of strange syndrome maybe from all the pressure on prostate...too much desire, but unable to release it...LIVING HELL...........so it's developed into so many problems...that i don't know even what to say anymore.
I go to ER, they say, "you shouldn't go to ER for these things, but your main MD"...and the SUrgeon, says just the oppsite...that, i'll die from surgery.................TRAPPED. WEAK. And I was bertter off...using the the high enemas, although they didn't do much...it was NOTHING LIKE THIS! The surgery was supposed to set things right.....not worsen everything.

I AM TERRIFIED. I AM IN PAIN. I CAN"T SLEEP...except in daytime..........everything i s working against me........and i don't know WHY THIS IS HAPPENING TO ME>............JCATGUY

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 12/7/2009 7:47 AM (GMT -6)   
You should find another doctor right away...

Can you go to another hospital? NYC has many...don't stop until you get some help.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/7/2009 8:33 AM (GMT -6)   
Get yourself to the Lahey Clinic in Burlington, MA. They have an excellent GI surgical department. I was in a very severe mess and they saved my life. Their number is 1-781-744-8581. Dr. Peter Marcello is now the one who does many complex procedures.

I got lost in your story, do you still have your colon that is impacted with poop? The NYC guy not actually remove it? Good Grief! Good Luck. Rosemary

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 12/7/2009 3:47 PM (GMT -6)   
as far as I have understood it correctly you have no colon any more except for the rectum that is still impacted (at least you assume it) and the docs weren't able to clean it out. Is this right?

You said you had the surgery for colonic inertia. Did you initially have an ileorectal anastomosis which means that your small bowel is reconnected to the rectum? This is the normal procedure for isolated colonic inertia. So why did your doc procede with an ileostomy? Did he plan a permanent ileostomy because you also have pelvic floor dysfunction/rectal/evacuating disorder?

I laso had colonic inertia and it also affects my rectal stump my docs left fro a possible reconnection. It turned out to be impossible due to the rectal spasms and my inability to push out even water. I also have dysmotiliy in my stomach and my small bowel.

However, I don't understand how the rectal problems (rectal impaction?)should influence the function of your ileostomy. For sure, you can still have pain with the rectum (and maybe a small portion of your colon, don't know and couldn't get it exactly). I also know the pressure and the rectal spasms and I am heading a removal of it.
I guess you still have some of your colon left (not only rectum) since the doc finally said it is a loop ileostomy. If it was just rectum left then it couldn't be a loop ileostomy; it would be an end-ileostomy, the rectal stump is often left even with an ileostomy. However both rectum and (if you still have some parts of the colon as well) colon still produce mucus even you don't use them. And this mucus has to be evacuated and for most patients that's no big deal. For me, it is.

However, I don't understand how these rectal issues could alter the function of your ileostomy since the functio/output of your ileostomy only depends on your small bowel function; the colon/rectum is disconnected so it can't have an influence on small bowel transit.
You could have developed adhesions in the pelvic region but they are unlikely to cause your obstructions since you already had the pain right after surgery.

So I would assume that your small bowel does not work properly; maybe there is a motility problem as well that causes the obstructions. You can't have a distended belly (that is a sign of obstruction along with sever pain)only due to an impacted rectum even if it was still severly impacted.
So maybe you should have your small bowel motility checked.

Where is your pain loctaed? Even if you feel it in the pelvis region...after the removal of at least most of your colon there is a differnet anatomic inside your belly. The small bowel dropps since there is no colon any more and more space.

My motility disorder affects my entire digestive tract as well as my bladder. Your probs could be linked to your impaction of the rectum. However, I have chronic intestinal pseudo-obstruction (severe dysmotility in the entire digestive tract causing sub-occlusion like states) and with CIP it is not uncommon to have bladder problems w
Sarah

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 12/7/2009 4:50 PM (GMT -6)   
I'm not sure of the names of the ileostomy that you have or may have, but I am hopefully having an ileostomy re-surgery in June.  I am having what is called a Brooke ileostomy and it is permanent.
 
butterfly

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 12/7/2009 7:19 PM (GMT -6)   
GO TO ANOTHER DR!
Don't fool around anymore.
Seriously, GO!
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


JCatGuy
New Member


Date Joined Oct 2006
Total Posts : 5
   Posted 12/7/2009 10:17 PM (GMT -6)   
LET ME CLARIFY: PLEASE TAKE THE TIME...THIS IS HELL!   I can see I confused people...I was in so much pain when i wrote, I apologize....now, I'm somewhere in middle, and can think a little clearer.
 
                            I'll put it in number format and try to keep it ONLY TO FACTS!
 
1. I was impacted many times, eventually dx w/Globlal Colonic Inertia (but wasn't told by GI MD the resutls untl I called Hosptial).
2. The head surgeon at major hospital where this GI MD was...after seeing many of Surgeons, after reading the results of the test said, 'You need ileostomy".
3.  It was supposed to be open supposed w/rectum removed...I was impacted at the time.  Surgeon said, 'I'm going in, taking out your entire large intenstin/rectum...give you ileostomy.
4.  I awoke w/not a permanent illeostomy but a temporary ileostomy, called, "Loop ileostomy"
5.  I went to see him 3 months after surgery and he dx me w/a double hernia (I had gained 25 lbs) and he said, "gain a little weight/get stronger...I fix it/and even give you Full ileostomy".
6.  Time passed, ...the hernias worsened, to the point where i am now.  I Cannot eat...I cannot put the flange on with severe pain ...because the hernias surround the stoma (I have a odd shaped belly, large buldge exactly where STOMA is.  Hence, to keep it to say on, I Use a stomahesive strip.  however, it's so TIGHT around the stoma...IT KILLS ME.  SO I practically, have to wear it, barely glued on and cut away....I kept my bag on for nearly a week, even tghough falling off...because it finally loosened...but, it was leaking....today, I changed it...as soon as i Put on new flange, the stool started pouring out from the pressure (nightmare)...even worse...I just tried to loosen it...but the it's not hte tape, but th strip, that i made too wide, as my stoma double/triples in size from the pressure of flange glue/stomahesive strip.
7.  I went to surgeon last week, practically crying..."the hernia is killing me". He gave me a real nasty look (as he's chief surgeon of hospital/major NYC hospital); what he has against me I don't know.
HE FLAT AT REFUSED!  He said, "you gain weight...I'll turn your ileostomy to permanent and take out rectum/pull out colon"
I said, "HOW CAN I GANE WEGIHT (i"ve lost 15 lbs, right back down to 129...just 10 lbs above pre-surgery) because when I eat/drink it expands belly more, the stomahesive strip dOES NOT MOVE, unless I take it off again...start cutting...but basically, i'm in a no-win/no-win situaiton.  If i place the strip close to stoma, which means a smaller in flange, my stoma gets cut and bleeds on sides.  But then I pulll it off, then add stomahesive Prep...cut real quick the areas that are too  close/tight...but I have to suffer at least 2 days, before it loosens up....making my hernias HURT LIKE HELL...can barely urinate...
   His answer, "TAKE MORE PAIN MEDS".......I said, "I AM...SO I"M SUPPPOSED TO SLEEP DAY AND NIGHT?"....HE smirked...and walked away.  He's heartless.
    I Hope i made it clearer...I know, the bag I put on a few hours ago, is so tight...even though i cut off soome of it...I'm probalby gonna have to change it, really don't know because Medicare keeps cutting and cutting my supplies...basically, this is an EMERGENCY...and i have other illnesses too...to deal with...and all the MD's aren't coordinating...SO i go to ER...they either tell me, "you must go immediately back to surgeon"...."when I go to surgeon"...he says, you won't survive the surgery" (but i won't survive NJOT HAVING THE SURGERY (6'1' tall...loosing more and more weight and SUFFERING IS BEYOND EXPRESSION!
    sorry for the "breif claificiation" (way to complicated to keep it brief; very sorry).
WHAT DO I DO?  IS it true, as he said, "I can't fix your hernia's'...he didn't even send me for XRAYS to see the expansion of them, all he said was GAIN MORE WEIGHT THEN COME BACK!
    Since he's chief of Surgery at that hospital...would calling ADMINISTRATION HELP?  This is top notch Hospita in NYC and I am frightened, nobody will ever want to touch another surgeon's work, and I can't keep making those tirps into manhattan...have to go by ambulette....it's a nightmare. 
    *I even wrote to my congtesman, senator...w/no reply....                 Thank you, JCatGuy
PS...do I get a lawyer?  Except I'm too sick to worry about lawsuits...I need medical help ASAP!

privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 12/7/2009 11:32 PM (GMT -6)   
J,
I know that surgeons don't like to touch other surgeons work. I also know that if your condition is as you stated you might not survive the hernia surgery. I have an ileostomy and have had it since the end of June. I was in the hospital nearly all summer trying to get over this stuff. At one point in late August I started complaining of pain in my left side, my ostomy is on my right side. I was in rehab and 60 miles from where I had surgery. The laproscopic surgeon didn't want to touch me because he said my bowel was so fragile that he was afraid it wouldn't hold together when he got in there. An interventional radiologist said I had an abcess and tried to drain it with a tube but it was too large. The General Surgeon made a 3" incision and extracted my abcess that was 28 cm by 19 cm. but couldn't get it all so he left it with 4 pinrose drains in it so it would form a tract. The drains are gone but I still have the abcess hole and stuff comes out of it somedays alot and someday not so much.

All I'm saying is that maybe he isn't doing surgery on you because he's afraid you wouldn't survive the surgery. Maybe you need to visit with a GP or Internal Med doc and see if you can come up with a nutritional intervention that will give you the vitamins and minerals you need to heel. I know it hurts and my rectum hurts at times and someone on here said that it is like phantom pain, like you've lost a leg or an arm and that it will get better.

I hope things get better for you JC it sounds miserable and like others have said find yourself another doctor. Can you drink any supplemental protein drinks like boost or those power bars? Good luck.

Cathy

JCatGuy
New Member


Date Joined Oct 2006
Total Posts : 5
   Posted 12/8/2009 1:54 AM (GMT -6)   
Cathy,
    I appreciate your reply...but I find it hard to accept.  He promised, first of a full open surgery,  he said he was either going to "Squeeze the colon's impaction" or  "cut it"...and take it out.  He did neither...when I awoke nearly 1 year ago...it was laproscopic, he didn't clean out my colon...spent 4 weeks of doing the same enemas I did at home (my rectum prolapses)...gallon goes in...maybe 1/3 comes out...
     What was the ponit of him even doing the laproscopic surgery...he knew i had an odd shaped belly, from lipidystrophy, and I'm too young, to sit in a rest home, receving TPN (cause I live alone)...night and day.
     He's afraid of me dying, but I can't even wear the two piece or one ileostomy cause my stoma is shaped like the top of a mountain of fat called, 'Lipidystrophy" from certian meds from another illness.
     He should've left me alone...i was 100X better off...and his sarcasm, and rudeness to myself...even family; he won't return a call...not even to me.
      I"m wasting away...that will kill a person.
      Eating or TPN< will still expand my belly...my belly when expanded, makes it' impossible to keep a bag on without leakage 1 or 2 piece...as the glue, favors one side of the moutain or the other.
    
      Why he didn't even take an XRAY...to see the advance of double hernia in 8months, saw him 2 weeks ago...just rude and basically kicked me out of office.   I'm so weak...I've been to ER 2x...they kick me out...(of a local hospital)...
 
      I'm too young to lay in bed, suffering from rippage pain in belly, not eating and waiting for either:
1.  My 5 feet of colon  will infect me as there's no blood supply to it
2.  High risk of strangulation, from all these hernias
3.  Starvation
 
(and other's have thought, if I die, from his surgery, he'll get sued...and if I die from strangulation he won't?  Meanwhile, I'm not interested in lawsuts...JUST TO GET ON WITH MY LIFE!
 
     Shouldn't he be concerned with that?
 
I'm sorry...I'm just so upset...and I just don't know what to do, where to turn.  thank, jc

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 12/8/2009 2:07 AM (GMT -6)   
You mentioned you live in the outer burroughs of NYC.  If you're willing to travel to Long Island...call Dr. Soterakis http://webapp.chsli.org/doctor/doctor/view/5782 .  He saved my life 31 years ago!!!

privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 12/8/2009 10:59 AM (GMT -6)   
I'm sorry JC wish I could help your doc does sound like an A**hole without bedside manner. Unfortunately we find that in surgeons and their godlike images of themselves. It sounds like several have had experience in your area with other docs maybe that would be your answer. Good Luck.

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 12/8/2009 3:35 PM (GMT -6)   
so do you have 5 feet of your colon left along with the rectum? It is essential to know this for us since otherwise we can't know the conditions.
I suppose that you you still have 5 feet of your colon which is pretty much (maybe it is one half of your former colon) and therefore pretty much mucus is produced and causes pain when not moving forward. The pressure by the lacking transport can aggravate the hernias, maybe it has caused them.

So it would be important to fix the hernias AND remove at elast the colon; otherwise I guess the hernias can come back.
If you just had the rectum left the situation would be easier; normally it need not be removed with an ileostomy, but in your case (like myself) it seems to be better.

Anyway, I don't know your weight but I am very underweight too and as you said you can deteriorate if you are left in this situation. Normally, surgeons have to do surgery even on patients that are severely cachectic. So if there is a reason for surgery they do it no matter what the weight is.
Maybe you should looke for another GI doc or colorectal surgeon.

You might want to consider TPN since this would not make your belly swell. TPN bypasses the whole digestive tract since it goes directly into the veins. Maybe this would be a way to gain weight since it is easiest to gain weight with parenteral nutrition. You can gain 2pounds per week and then you can have surgery.

Sarah

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 12/8/2009 5:49 PM (GMT -6)   
Sarah, you are a great resource. I just love reading your posts because you have the best info.

JC, please see another surgeon ASAP. No human should be treated as badly as you are being treated. Take Sarah's advice. Her advice is awesome.

TDR

Xianghua17
Regular Member


Date Joined Jun 2003
Total Posts : 79
   Posted 12/8/2009 8:04 PM (GMT -6)   
I almost cried as I read how much pain you are in and how you are being treated. I am so sorry you are going through this. I am with everyone else when they say find a new doctor. If one tells you no try another until You find someone sympathetic of what you are going through. I will pray for you and please keep us updated.
Heather

I was diagnosed with Crohn's Disease in 2000.

I was hospitalized about 10 times between 2000 and 2004. I had about 9(or more) blood transfusions total.

Finally, in January of 2004 I was told the damage was too bad and I needed a permanent ileostomy.

I went through a healthy pregnancy in 2006-2007. I had a handsome 8lb 6oz baby boy.

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