Ileostomy Complications and Unusual Weight Gain Concerns

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 with 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 up 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 GOLYTELY, 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 with ileostomy, but, I have the pain I had prior to surgery and even worse.

Meanwhile I have a colon just hanging around inside me...with no blood supply...it's probably filled with 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 with 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...because 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, with 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 with 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

Sorry to hear you are having a rough time of things. We have 2 ostomy nurses who answer these types of questions. You might try posting this in the ostomy-related questions which are at the top of, or very near, the forum home page. I am sure both of them are quite busy and may not have enough time to look at all sections of the forum every day. Wish I could be of more help.

https://www.meetanostomate.org/discussion-forum/viewforum.php?f=18

So you don't have health insurance, either? Listen, I had my surgery done at a "teaching hospital" (University of Arkansas Medical Sciences...UAMS) and couldn't be more pleased. If you're being passed along while suffering, you may want to consider changing doctors. It really makes me angry. Anyway, don't sit and suffer. Hospitals are like insurance agents: plenty of them. Go get help.

To qualify that: Most teaching hospitals don't require insurance to treat the initial problem. Red tape is always an issue later, but doctors are paid to heal. (Sorry, it just makes me so...)

Anyway, I'd suggest a teaching hospital. Now, I'm all mad and pissy... MAN!

I hope it works out, Jay.

I understand the mad and pissy feeling...re: the Surgeon and MD's, and how they've treated me...
Just wanted to clarify, actually I have Medicare as primary insurance and Medicaid as secondary, which backs up Medicare's 80% (that's if the MD accepts Medicaid)...now this surgeon, is the Chief of Surgery with an impeccable reputation...and there's a member of clergy (Rabbi) with a big family and many visitors and he treated him wonderfully.
Me, on the other hand, my family is out of state (across the state)...and basically had only one visitor, a few times...He knows he messed up initially, and then tried to fix his mistake by spending 4 weeks on cleaning out the large intestine instead of going back in, and taking it out (cause of impactions, which he could not remove because he (for some reason, at the last moment) decided not to do OPEN surgery but went for LAPAROSCOPIC and claimed, "was unable to move it out"...
Originally, he was going to do open, cause I didn't go for a month...and the past 12 months, I went maybe 20 times, and that was either me giving high enemas or ER/hospital enemas (with lactulose, horrible stuff, and of course, many gallons of GoLYTELY which never worked for me)...
After the surgery, I had such pain and X-rays revealed huge stool...suddenly, I'm getting GoLYTELY but through the Stoma, in some way, to route it to large intestine for if I drank it, it would only reach small intestine (cause of diversion ileostomy).

He never succeeded and only 1 time got some stool and then took X-rays and said, "Maybe a teaspoon full"...IMPOSSIBLE cause I only made a normal bowel movement in volume and I still had all the pain and pressure, and then...suddenly, he was pressured by hospital..."get him out"...too expensive, I then called up Medicare and I complained which only left me there 3 extra days, and he made sure those 3 days were miserable...they didn't come up to bring up food, change my linen...NIGHTMARE.

I don't know what to do.

Some people say I should call up his nurse/secretary and use the words, "Patient Abandonment" and then his insurance would go up if I took it to court and they claim he'd jump to help me. I feel, "Not this guy" his ego is through the roof and he's chief of surgery of a major NYC hospital and he sees I didn't have family back up and thus, he's not concerned ...and truth is, probably don't have the energy/plus the pain, to take it to the courts.

To find another Surgeon...is the other option and it's so hard...trying to juggle a million things, and when you're by your own...outside of getting Visiting nurse for supplies and then they take temperature and pulse, ....leave me with a home health aid, that I have to keep one eye open cause "things disappear"...

Rough scene right now... THANKS FOR YOUR CONCERN..............Jay

Hi JcatGUy. It kinda sounds as if you are having a rough time of it, dude, what with living alone in New York and the only people who can remotely help you, you're on bad terms with. I can see how you must feel so alone and angry.
Although, in my opinion, taking the anger out on the medical profession isn't that productive. I was in the same situation (kinda) myself before diagnosis, and it was only until I a) flipped out and b) played ball, did things start moving at a satisfactory level.

Most consultants and specialists are fully aware of the emotional aspects that surround one's bowel problems and so long as they aren't continued to feel inadequate because they may have kinda cocked up a little bit, then in my opinion, they are generally quite forgiving. I tried the patience of many a consultant in my time, he he he.

Anyway, that being said, dude, I guess it still doesn't make you feel better, huh? So, I take it they haven't diagnosed the underlying reason for the ileostomy yet then. You mentioned severe global colonic inertia (lack of movement in the colon), but due to what, mate?

I'm no doctor, just curious as to why they would simply leave you in an agonizing situation like you're in, or am I just being a naive Brit?

Have they mentioned diverticulosis or any other bowel diseases/defects, perhaps done tests for any, or done any test for any other slow transit disorders such as a colonic transit test or an anal manometry? I imagine they have tried every which way by now before considering surgery. But it does sound to me as if there is an underlying problem to this constipation rather than just a generalized colonic inertia.

I imagine it can't be too much fun having a potentially infected colon still hanging around inside you either. They have done scopes/tests and eliminated those possibilities, right?...

As for your middle-aged spread coming on, lol, this is a common situation for most, under normal circumstances after radical surgery or a very restricted diet for a long time, when your body starts storing fat again, it kinda bulks it all up at first in those easily obtainable places, for use in another emergency, and it's not until your body realizes that it doesn't have to go through another "famine," does it start spreading the body fat around evenly. Couple this with your recent swelling due to laparoscopic surgery, I imagine it will be some months before you fit back into them. You could always try stitching an elastic button clip onto them; it takes 5 minutes and you can wear your old trousers again.

Keep fighting, mate. If venting your anger at the medical field is getting you by at the moment, then who am I to say any different, but go easy on them, for you never know, one day you just might need their services again.

P.S. Sending your surgeon a bottle of his favorite tipple works wonders. That's what I did! x

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Hi Sweede,
     I enjoyed reading your rational view on this matter, as I've lived on the basis that the world is the way it is, and if I don't like something, I either accept it and let it go, or attempt to change it...either way, I've always viewed the individual within the greater system...and taken it from there, and either played ball or took a stand...accepting the results, as long as I know I did my best.

     Physical pain, having your entire appearance change (well over 100 lbs weight loss over a year and change), many good friends recently passing, family splitting the scene...and check this, even my wife, cut out..."for better or for worse", lost its meaning when things got "Really Worse". If it didn't all happen to me...I'd never believe that this can happen to a person.

     Having a degree in Psychology, and being a very concerned person for the welfare of others and animals too, I would've never thought or anticipated that I could be in this position, where like a house of cards, a few things went really bad and my entire world crashed.

     Having said all of this...I still appreciate the voice of reason...although you I can guarantee you, although my anger may appear to dominate, all I really want is to get better and in a second, I can forgive and forget...hell, I'll even apologize for something I did not do, just to get on the good side of those who can help, and forget the past...and move forward.

     Unfortunately, this particular MD (surgeon) seems to not even give me the chance to talk with him...without communication, nothing can be achieved...meanwhile, I'm suffering and although I have Visiting Nurses come, to help with basic matters...ordering Ostomy supplies, taking vitals and some have even called my surgeon...he hasn't returned not only my calls, but their calls too...and they are sent to work, hand in hand, with my MD's.

     Although funds are bare bottom, sending him a bottle of whatever, If I thought that would work, I'd do it. Also, I certainly have no interest in a lawsuit or to aggravate this situation because if I can complete an action, I'm not going to start something...and I'm in no shape to follow up on a legal case. I'd love to have this worked out, in a pleasant and rational manner. My only move in that respect would be to call and speak with his Nurse/receptionist...who's always been very kindly towards me, and see if I can get a follow-up appt (but only speak with her because I haven't gotten anywhere with the other receptionists).

    Anyway, as far as what you wrote about the Belly Swelling up and that I was in a state of starvation for such a period of time, that the bottom first grabs in those places (belly) and only when the body senses the food will "keep on coming", will it start to "spread the wealth" (so to speak)...I'm glad you wrote that...because when I came out of the hospital, I was down to 114 lbs (6'1"), looked like an Auschwitz survivor...and now I'm 130 lbs (in the morning)...so I've gained 16 lbs. in less than 2 months...and my appetite is insatiable. In fact, they even have me on 3 bottles of "BOOST PLUS" (360 calories, 14 grams protein, the good fat, and all kinds of nutrients)... And I usually mix it with a large glass of Cranberry-Pomegranate 100% pure juice and it tastes like a MILKSHAKE (yum). I do that 3x a day, and I also eat regular meals now, less the hard to digest and "no-no" foods.

    Nobody ever explained that to me before...that my belly would swell...because of the reason you gave, which is perfectly reasonable....and I really hope it eventually will spread out to my arms and legs.

    My concern, re: colon left inside me...isn't just the cramps and "urge to go" with globs of goo coming out at times, why I don't know...but is toxicity.
    I am awakening with large welts (like this morning) that I never had before in my life...some as large as a USA Quarter, and most about the size of a Nickel...all red and round.
I'm wondering if that's some form of self-intoxication.

Oh, about the testing. Yes, I went for a Scintigraphy motility test. And the etiology of the severe global colonic inertia is thought (but not definitively proven) to be related to my nervous system...as I also suffer from pretty bad, "Urinary Retention" and have to do Self-Catheterization at times. Also have Peripheral Neuropathy for years...so they said, "if it's neurological, we can put you through dozens of tests, some are very painful and even if we confirm that it's neurological, there's nothing they can do for me anyway. I mentioned and asked about this new "Interstim II" (sacral stimulation) but, they didn't know what it was.

    Anyway, I'm going to get going...but I did appreciate your email...it was real, and it gave me some information that I never heard/read from anywhere else....THANKS AGAIN, JAY (NYC)

Jay, it sounds to me that you are going through a very rough time with everything. The first rule that I have learned being an ostomate is that there is no need for us to be in pain. I'm wondering if you have taken the other's suggestions and posted the questions to the ostomate nurses in this forum. My concern about your stomach distention is whether there is any other reason besides weight gain that this is happening, and since you are having so much pain still, it raises a red flag (a little one, but still enough for concern). As for weight gain, I'm a medium build, 5'6" female who went from 140 lbs to 90 lbs when I was at my sickest. My husband used to call me a pumpkin with popsicle sticks because the prednisone I was on gave me that big swollen moon face, but did not affect the rest of my body. After my surgery, in a short period of time, I went from 90 lbs to 170 lbs... I found food, it loved me, and I wasn't getting rid of it like I used to LOL, like Sweede said, it will all even out eventually. You are just entering into your third month post-op, so really you should be having a follow-up appointment with your surgeon soon. Hopefully, he will get past his giant head/ego and listen to your concerns... any ideas on how to get past the receptionist and to the nice nurse in the office? I swear grumpy doctor's office receptionists are something they screen for on the applications. But you know, as much as you want to be nice and just want to feel good, it is starting to sound a little like patient abandonment, what has your MD said about the whole thing? In my opinion, he needs to send you to a new surgeon, maybe one outside NYC that has time to listen to your concerns.

Hang in there, this site is great for support. I wish you the best with your surgeon's office, and Sweede has some great advice and a very positive attitude...