TOTAL COLECTOMY PART 35 THREAD 13

Sounds like Lizzie's Dumping will just have to stop on its own then without the aid of drugs. Otherwise she reacts too much to the slow down drug and everything stops and she needs the NG. (hopefully her output will start up again) But if it goes into dumping again, then she will need IV's to replenish her fluid loss just like Tracy is getting now. So they will have to keep Lizzie long term, see her through her dumping and give her the needed IV's. THis is what I got from the last update on her. COntinued prayers for her. Rosemary

Hodaya,

I agree, I don't think this k pouch was a good choice for Lizzie either. She did however make her choice based on the information she was given at the time BY HER DOCS (reminds me of MY original disaster decision about my first disaster surgey in 2006), but like me she was working with the info she was given at the time.

She was not in good shape going into that surgery. She was feeling much better with the ileostomy stoma and external bag. Her stoma had not been made correctly and did not come out far enough to let the poop fall into the bag, instead it went down her skin. (That effluent burns like battery acid on skin contact). My idea I had wished for her at the time was that she just have the stoma remade correctly and move on with her life. But things went as they did.

Hind site so 20/20 for all of us isn't it? I just pray for her that they can stabelize her. From what I understand the k-pouch structurally is working OK, it is now just some motility thing that is very sensitive to meds given her for dumping. So who knows, she could be having the same extremes even with an ileo stoma....dumping....meds....then stopping all together and needing the NG. So just hopefully if they can get the motility issue under control, the k-pouch just MAY work out. Fingers Crossed for her. If she needs to go to an ileostomy stoma I hope she is strong enough to withstand yet another surgery; as you say she has had soooo many in a short time.

JUST FOR INTEREST for everyone,....... out at Mayo Clinic they have this small bowel motility test that is done with some long thin catheter tube threaded right through the small intestine and some how it records the muscular contractions the small bowel makes. It is invasive and is much more than the small bowel transit test with the scintigraphic radio active egg that many of us (including me) have done. Maybe Lizzie needs some work up like this to see what meds she does need or what is wrong with her motility?

The human body is such a delicate machine. Sure wish I'd learned a lot more anatomy in school or I would never have had my hysterectomy as it is the uterus that holds the small and large bowel, bladder, and rectum all in place. Such a simple concept yet not one I knew of, was ever taught, nor was it explained to my by my hysterectomy doc (or I would not have had that done which lead to all the rest of my story.) As a former teacher I really think the schools could do a lot more with anatomy education. Also any pelvic surgery including hyst dirupts the nerve implulses and blood flow to other organs in the pelvis and can affect their functioning. This is not Lizzie's case, but I think could apply to some of the rest of us.

Seems like surgery begets more surgery. BUT none of us would have gone down the roads we did if we didn't have an issue in the first place. So frustrating, isn't it?

(I had 3 jars of baby food chicken, a jar of baby food spinach with butter and salt, crackers, and chicken noodle soup complete with the noodles. I feel so much better than just swilling down ice cream. Though.....that might be a good dessert Somehow we all have to go on that show mystery diseases. We could do a good presentation.

Rosemary

Wow, this is a huge surgery. I have felt horrid for 2 days. Throwing up green bile and lots of it is. just awful...UGH, I hate it. I have also been suffering in pain not pushing the button on my pain pump. But the doctor prescribed something called entereg to help my stomach wake up. So, I feel a bit better with the pain atleast. Sorry, can't type long...my thoughts are jumbled on these pain meds.

Tracy,

All these gut surgeries are a LOT more than any other type of surgery. The gut actually rules and when you disturb it it takes a long time for things to settle. I was in Lahey for a month. I got the prize for longest stay. (I'm not saying that will happen to you, but these recoveries are not fast or easy for most people.) Rosemary

Hi Hodaya,

Yes, depends would be a good idea. In the hospital I actually had left-over colon prep left in me which came out unexpectedly. This had me real confused as I knew I was diverted with the ileo, but this big blast of watery left-over prep coming out of my butt really surprised me.

Then about a month after the surgery I had a cup of mucous just fly out of my rectum; I was home by then.

I had bad ileostomy diarrhea all last night. Late last night I had some low calorie gator ade and Ice cream. I forgot the low cal gator ade has the sucrolose (laxative effect) fake sugar in it. That did it. Today I am just basically sleeping with my cat and sipping PediaLyte.(no sugar only a bit of dextrose but non-laxative effect thank God.) My original issue with colon and all fully intact and working could have been solved with sucralose or sorbitol. THose fake sweetner laxative effect substances. I cannot believe not one doc of the many I saw even mentioned this prior to the original surgery that landed me with so much trouble then the ileostomy to save my life. Unreal. Rosemary

Hodaya,
Yeah, you're right, I don't remember Lizzie having the motility issues with her ileostomy. I wonder how having the k-pouch made brought those on if that is what it is. Metabolic acidosis resulting? So confusing. Too bad. I hope they can solve the problem. Time is moving on. Rosemary

Hey All,

I just wanted to peek out from the shadows and say "hi" again. I have been following your threads almost everyday. I have been going back and reading old ones, trying to educate myself through my healing process. I am now 4 weeks post op, for my total colectomy w/ileorectal anastomosis and your threads have helped me through this healing so much. I love that I can always find a post where someone has gone through the same pain or issue giving me the reassurance that this is normal. I have to admit I have been very surprised at how long of a recovery this is. I know they tell you it is but wow!

I went off my pain meds at 2 weeks post and now take 2-4 Advil a day to help. I am still wondering about a couple things though and and hoping someone can help out.

I seem to once a week get a partial blockage, that I will break free with walking, massaging and liquids. My Doctor has suggested that it is probably small kinks as the bowels find a resting place or can also be from internal swelling too. How long do these take to stop? When do you get back into a diet routine, where you don't have to back and forth between solids and liquids so much.

I also have notice my abdominal swelling going down more and more daily but still have 2 lumps that pull and hurt everyday. Has anyone else had these and how long till they relax and the pain subsides?

Lastly, OMGosh am I sore every morning. When I get up and go pee my abdomen aches quite a bit for the first 2 hrs, how long does this sensation last as well?

Again thank you all for your support, it is a wealth of information and comfort that you have given me and even though I don't know you all very well I say prayer for you all. My heart aches for Lizzie and her battle, Rosemary and her lawsuit and Jacoby needing another surgery so soon.

Kandida

Hodaya,

TRUST ME Unless you have some undiagnosed small bowel motility issue, diarrhea from an ileostomy can be easily triggered by too much sweet and too much fake sweetener and caffeine and chocolate and grape juice and apple juice and of course prune juice and tea. I am severely paying the price today for that fake sweetner in the gator ade and ice cream and also salty soup I had last night increases effluent flow. I'm just going to sleep all day I lost so much effluent last night. I did take a lomotil and that slowed things so am OK now. Just exhausted. If you do have any issues with a constipated ileostomy that is not due to food blockage or due to adhesions but if you do have a motility issue in your small intestine just try those foods mentioned above and you will overcome it TRUST ME ON THIS It's scary having ileostomy diarrhea it feels like the stoma is a fire hydrant.

Yes, your rectum will continue to make mucous for the rest of your life. How it went with me was post-ileosotmy op I passed about a whole cupful of mucous about a month after surgery. The stuff I passsed rectally in the hospital was just left over bowel prep. After the month after mucous passing, then it got harder to pass as less was produced. As my rectum, pelvic floor, and colon are scarred in from the 2006 original surgery I have a hard time passing mucous. Have to take an enema. The mucous is not an issue all the time. It usually comes out with an enema. Occasionally I have it suctioned out with a sig scope. BUT I still have my whole colon in me so I will always make more mucous than you will. Your mucous will only be from your rectum. It is pretty slippery so getting it out one way and the other will be do-able.

Metabolic acidosis is I think an upset in electrolyte balance that Peltz has referred to in a previous post. This is one of her theories on what she thinks may be wrong with Lizzie. It's complex but I think the gist is that if one electrolyte is high and the other is low you have diarrhea then if the electrolytes reverse themselves you have constipation. That seems to be what lizzie may be going through. (If the k-pouch is indeed OK, then it may be this upset in electrolytes that lizzie is dealing with.) It was just an idea Peltz had, but she seems to know quite a bit due to her own complex issues, so she may have a point. This is just my understanding of what peltz said.

Rosemary

Rosemary,

My surgeon did do a scan (it showed nothing), then after admitted he wasn't sure what was causing it and gave me the swollen and shifting answer. He has asked me to let him know how it goes from there, I keep him updated, so we can discuss it more at my next appt. (My surgeon also explained that adhesions usually don't show on a x-ray but that he didn't see where there might be one "pulling" a kink.)

I have this problem on a weekly basis, and I can't pin point a specific food that causes it. I just know things get sore abdominally, then small amounts (tablespoon size) of "jelly or mucus" like substance will come out, this goes on for a couple movements. After that it turns to a yellow liquid with small amounts of sediment, then all will stop. I go to drowning myself with liquids and then about 12 hours later have a blow out and all is well for another week. I never get nauseous or throw up but will run a low grade fever.

I guess I am just lucky that way. :)

Hey ladies...How is everyone? I know that I have not been a frequent poster and I do apologize for that. I have read every post that is posted every day though. I often pray for lizzie and am glad Tracy that you are doing better.

Well I never really posted because I always felt like my problem was minimal compared to all of yours BUT as of today I am officially a hot mess. I went and saw the doc at University of Chicago and after reviewing my records and talking to me things have a taken a turn for the not so fun. He said that I in fact did fail my sitz marker test. He doesn't understand why they did day 4 and day 7 because protocol is to do day 5 only. He said that since on day 4 I still had four markers in the right colon and the rest were scattered that wasn't normal at all and the fact that I had moderate stool throughout was not normal either. He also said me having even one marker, which I did, on day 7 was abnormal. He said my colon is CRAZY long and that they just don't grow that way. They are made that way from years of constipation. The part I am having a hard time with is this. His ONLY recommendation is a permanent illeostomy right off the bat. I was sobbing hysterically because I really thought I was only seeing him for a colon ressection since the other doc said my transit was normal. I asked him if we could do the resection anyway and he said that was totally my choice but he feels it will fail since he feels my rectum isnt working properly either. He said when he did the exam he could feel hard stool in my rectum and said normal people would be needing to go to the bathroom and I still don't feel like I have to go. Does any of this sound crazy to anyone or is he right? I feel that jumping right to an illeostomy is crazy. I am not sure where to even go get a second opinion since this was my initial second opinion. He also said the only test he would have me do from his standpoint before surgery is a barium enema. Wouldn't my anorectal manometry have been bad if my rectum wasn't working????????? I am so scared and confused. He also said that if I was his daughter he would do the ostomy. Right now I think I am leaning toward trying the resection. He said if he did the resection I would have a colostomy for a while. This also scares me. Please give me your opinions. I don't know what to think. This was all just sprung on me and I was even at the appointment myself because we thought it would be no big deal. Sorry I am rambling. I can't help it

Hoping for an end.....Get yourself to Washington DC (It will be worth the trip from wherever you are) Get an appointment with Bruce Orkin. MD for thorough retesting of everything. He is at George Washington University Medical Center. Thorough third opinion seems in order from what you describe. As far as YOU having to decide about the ileo v.s. the colon resection with a colostomy (presumably temporary), YOU are not qualified to make this decision for yourself. THIS IS A DOC'S JOB. So call GW in the a.m. and get yourself set up. TRUST ME, I speak from very sad experience.

I was so damaged with an initial misdiagnosis that lead to an unneeded surgery that permanently cost me the use of my rectum and colon; ileostomy being the only thing done that could save me. (And I did not even have a disease. Not even colonic inertia.) Ileo is preferable to death and so far so good in the main. BUT there are issues. ie. Today I was in most of the day from ileostomy diarrhea. Electrolytes and water absorption is difficult without the use of the colon which does that job. WIthout the colon it is very easy to dehydrate and need IV's. Ileostomates become prone to kidney stones due to dehydration issues (does not mean you will get at kidney stone, but you would be more prone with an ileostomy.) You are smart to question this.

Good Luck, Rosemary

Post Edited (esoR) : 6/25/2010 11:51:56 PM (GMT-6)

Hi Hodaya,

Yep all that is gone of my colon is my sigmoid which did not need to be removed in the first place upon medical/legal review of my case.

Anyway, yes I have the rest of my colon in me. It is in "dis-use" state. Has it's own blood supply and nerve endings. BUT you can get this thing called disuse colitis. Luckily I have not gotten that and hope I don't. Though my ileo is permanent, he left my colon in there as a support structure so my small intestines don't all fall down. (Plus he was probably thinking if some miracle was discovered to totally dissolve scar tissue maybe I could some day be put back together. I think his heart was in the right place, but I don't think that will ever happen.)

Re your stoma to be relieving constipation. I don't see how it could miss if you have no small bowel motility issue. (That is unless you got a food blockage or adhesion blockage) which we hope you don't.

So yes, I produce a LOT more mucous than you will just having your rectum and me having my whole colon.

And even with that, the mucous issue is not a huge deal for me.

Rosemary