Struggling with Surgery Complications and Pain After Ileostomy

I originally posted this question but in the wrong section, so a member wrote to me and suggested that I enter my post in this section, as she also mentioned that sometimes actual "Ostomy Nurses" reply as well. Anyway, read below please:



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Hi all,

I had my ileostomy put in right a day or so before 1/1/09 and well, was hospitalized nearly 2 months because they goofed initially by not doing an open surgery, as planned, as I had impacted stool (top to bottom) and well, when I awoke...although in severe pain (even w/IV Fentanyl pump), the worst pain, was the pain I went in for, which was severe constipation (hadn't gone for nearly 1 month). Severe Global Colonic Inertia...and well, for whatever the reason he didn't do the open (which was to allow him to squeeze out the impactions, or use gastrografin or even resect the colon at its worst spots), he ended just doing a "laparoscopic surgery"...perhaps it was the deception of my weight for over the previous year, eating without making was so painful I lost 120 lbs...down to 114 lbs...at 6'.

Anyway, he kept me there all that time and 5 weeks were spent using every trick in the book to disimpact me (using the same old methods, never worked at prior hospitalization...but now had ileostomy...so I couldn't drink GOLYTLE, it had to be injected in stoma...somehow they routed it to large intestine, and a variety of techniques....out of over 10 attempts...only one time did I get anything dark come out, and it certainly wasn't a month's worth...



Anyway, he changed his story (surgeon) from top to bottom impaction to "tablespoon" as they had to discharge me, although I appealed I lost.



Since I've been home, the pain of "needing to make"...is awful...and the cramps (worse than before). True, I can eat...and whatever I add, can be eliminated w/ileostomy, but, I have the pain I had prior to surgery and even worse.



Meanwhile I have colon just hanging around inside me...w/no blood supply...it's probably filled w/toxic stool...I'm getting rashes and feeling weak...



Here's my question: Well it's really two. Has the above ever happened to anybody on ostomates? Or heard of such a thing...BTW, my surgeon won't talk w/me...said, "go to ER if you're in pain".



I have put on about 12 lbs. since I've been back (maybe 6 weeks)...and sometimes I even overeat...cause well, when the pain eases, I can't get enough of food (I was so food deprived for so long)...and all the weight is going INTO MY BELLY. So, I look like this Pole/Skinny tall man, w/this growing pregnant-like appearance (like 3rd month)...but maybe more so, like the beginning of a beer belly? And it looks deformed. I try to be active more than before I had surgery...where I was in bed 24/7...but, still, all the weight is just filling my belly, which is where the BAG is, so even though I'm super skinny still, my waist size w/the floating flange/bag...probably is like a 35" waist...instead...



So I also was curious if others had this issue...that lost a lot of weight and then when they started to put it back on, it wasn't put back on evenly distributed but ALL in the lower belly?



None of my clothing fit...and what fit even 6 weeks ago, are too tight now, and my previous life, all those clothes would just fall right off of me....



Of course, my main concern is, is this within the realm of "normal newbie ileostomy issues/problems" or am I fooling myself and need to get him (surgeon) or another to fix whatever the problem is?



Thank you all, Jay

Hi JCat Guy

You have really been through a lot.  I'm just the nurse, so I can't tell you re: the competency of your surgeon.I can't tell you whether it was wise or not to do your initial colostomy laparascopically in your particular case; but I have had 2 pts. with this diagnosis and they did they same procedure.  For one, she still had the same issues with constipation even with the colostomy.  I think they ended up resecting quite a bit of her colon and making a continent pouch connected to the rectum which worked for her.  The other did well with her colostomy in terms of ablility to have bowel movements though she continued to have abdominal distention also even several months out from surgery.  I am not sure how she fared in the long run.



Per literature, they can't always pinpoint the exact reason for it.  Treatment is usually conservative with large intestine preservation if possible.  I saw the best of GI and colorectal surgeons stumped with the last colonic inertia patient.  



My best suggestion:  because of the pain, you should follow up with a gastroenterologist.  Despite a functioning ileostomy, you still have a retained colon which may be part of the problem and warrant further exam.  The urge to go from your rectum is normal.  The blood supply should still be intact to your colon even if you are "disconnected" from it with your ileostomy diversion..  If not, you would be in more severe pain than now, and would be a medical emergency.



Go to the gastroenterologist first, that is your first line diagnostician.  If they want you to consult with a surgeon, a colorectal surgeon is a must.  I would not go to the same one you had.  Whether he did the correct thing or not, if your confidence is lost in that person, find another.  2 opinions if needed.



I hope they can get a proper diagnosis and solution to your problem, and very sorry you have to go through all this.



Please let us know how things go.

hi, i'm so sorry you are feeling so terrible, i agree with the nurse....a g.i. doctor is who should see you.....get the records from previous surgeon.... the g.i. doctor can read his notes and tell you why he did not do the surgery you believed you were having.  i would be very angry if i was discharged with the same pain/problem that i saw the surgeon for in the first place. and even more angry, if his response to my protest of being discharged while still in pain...was go to the e.r.! i hope all turns out well for you : )