TOTAL COLECTOMY PART 36

I'm SO glad to hear that Lizzie is doing better. Slow and steady! Thanks for the updates, Allie.

Hi Pamela,

Welcome~! I'm fairly new here, too, but I've been SOOOO glad to find the kind, caring, experienced people here. There's lots of info, lots of support, and lots of 'real life' experience. Thank you ALL for making this such a great source of healing.

Your story is almost exactly like mine. Years (decades?) of being told that I 'just' have IBS-C, living on fiber and Miralax. Got to the point I could not go out socially, because I could not predict when I would be curled up in pain, chills, etc. Last summer I found a new GI, who was much better to work with, and prescribed Amitiza. It worked for about 4 months, then stopped working. My entire winter was spent going through all the hoops----I mean TESTS--- to see what the problem was. Not only did I feel like crap ( ) because of the chronic constipation, but the testing regimens were no fun on top of that.

Like you, I finally got the correct diagnosis of CI. My SitzMarker tests (yes, more than one) showed the rings stayed in the ascending and transverse colon, very few in the descending, and none in the sigmoid. No pelvic floor dysfunction, or outlet dysfunction, so finally, in April, I had a colectomy with ileorectal anastamosis, what you are scheduled for (yay!).

First surgeon (general surgeon) I consulted wanted to do it as an open surgery, but I was not comfortable with that. So I found a colorectal surgeon specialist who had done hundreds of these surgeries. I have had previous abdominal surgeries, but even so, he was very comforting in telling me he would plan a laparascopic procedure (there was always a chance he might have to convert to an open surgery). My surgery date was April 16 of this year.

I did not have any trouble with the surgery itself. Pain management was very good. I had a couple of other things taken out 'while they were in there' (they normally remove the appendix at the same time), so my surgery was about 5-6 hours in total. Amazingly, by the next morning, I already had gut sounds!! All my doctors (4 of them) were happy about that.

I stayed on PCA (Patient Controlled Analgesia, or pain pump) for a couple of days. I was sore, but never any pain, which amazed me! I felt weak, but was up and walking the day after surgery. I did have frequent bowel movements, in fact I think I started late in the afternoon of the day after surgery. I could 'tell' when I needed to go, and while the IV pole/pump was a hassle, I was able to get up to the toilet on my own.

Word of warning: Nurse wanted to try to transition me from IV pain meds to oral on day 2. I think she gave me 2 Percocets, and man, was I OUT! for hours! I'm sure they could hear me snoring at the nursing station! Unfortunately, I also got very dehydrated, and I had a very difficult evening/overnight. (I had been thinking, 'Wow, this hasn't been too bad, I was expecting much worse!' HAH---I cursed myself.)

I had hours of fever, vomiting, bowel movements which I had NO control over. My poor nurses that night! At one point I had both ends going, and I felt like a 5 year old---WAAAAAHHH! My (angel) nurses put me in the shower on a bench, with warm water washing everything off as it came. Finally they plugged me in to IV again to rehydrate and get meds on board, and I could sleep a bit. And my nurses could get a break! That set me back a couple of days, but I was out of the hospital on day 5.

I began eating soft foods the day after surgery. Didn't have much appetite, and was getting to know my new 'plumbing'. Had instructions for each of my doctors as far as diet, activity and hydration.

At home I was sore, tired, slept most of the time, and had dilute Gatorade or G2 on hand to stay hydrated. I only needed ONE dose of my pain meds once I got home. Things are so much more comfy in your own bed! But really, I continued to be amazed that there was virtually no pain! Just soreness.

Scrambled eggs were very easy to manage, and I think I ate them for about two weeks straight! I could try anything I wanted as long as it wasn't on my 'forbidden' list. You'll get the same list. Each day, I walked. First a very little bit, to the kitchen. Eventually outside, and eventually down the block. Be prepared to be exhausted. Somewhere around 2 weeks I finally felt noticeably better, as far as not sleeping constantly.

Couple of tips that I learned, and probably from people here: When you move in bed or try to get up, use your arms to push yourself up, not your belly. Hold a pillow across your tummy, to support it a bit for a while, if you are up, or going to the bathroom. You will come to realize how much you tend to use your belly! Of course, I was afraid of having accidents, so I got some bed-liners that were helpful. I didn't have much trouble when I was awake, I could get to the bathroom OK. But when I was sleeping, I didn't want to have to worry about it, so used adult diapers for a couple of weeks. Didn't really need it, but it helped with the 'fear' of having an accident.

You will be able to eat normally again, once you are through the healing process. I am still (after 4 months post-op) finding out what I can tolerate, or what causes unexpected results. Everyone is different, which is why it is so great that lots of people here have really good suggestions about foods and what to beware of, or what you can usually count on as 'OK'. As far as lactose intolerance, yes, you'll probably still be lactose intolerant. I am. But for me, Ice Cream is one of the major food groups, so I take Lactaid tablets. Probiotics may be helpful, too.

I can tell you that I am SOOOO HAPPY I had this surgery. If I'd even known about it sooner, I would have pursued it, but no one ever asked the right questions until I found my 'new' GI. Thanks DOG!! I am not 100% yet, as far as fatigue. (That is taking a LOT longer than I expected, but my doctors remind me that I had MAJOR surgery.) BUT: I am able to go out to eat and be comfortable---I usually have to use the bathroom within an hour after eating; you'll get to know your 'schedule'. Just NOT having the pain, inflammation, discomfort, fear of a flare up----all of that is GONE. Oh, and as far as scars, I had one large-ish one at my bellybutton, four smaller ones as access points, and one very low on my belly for my hysterectomy (done at the same time). All have healed cleanly, and are fading. At first, you might want to avoid wearing pants or jeans that might rub on your incisions. I was reallllly fascinated by how they all healed: the surgeons used glue, not sutures, on the skin level. Inside was a different story!

Feel free to ask questions, especially as you absorb more info on what to expect. I remember reading this board and thinking, geeezzzz! with all these complications or post-op problems, maybe I DON'T want to have this surgery! But as someone pointed out, many people HAVE had the surgery, and have had very positive outcomes, they just no longer post here. So don't be scared about the 'possibles', just be informed.

RottieMom

Rottiesmom, you poor thing....getting dehydrated that soon after surgery...WOW...that is just terrible. I was hooked up to the IV and pain pump until the day I was released from the hospital. But, I had tons of output and it was all liquid, so, the doctor didn't want to risk me getting dehydrated. How many bowel movements do you have now?

Pamela, I am married with 4 children, so my life is never dull. :) My husband has been a real trooper through all of this and my many issues. I have had many surgeries for pelvic prolapses, anal fissures, which by the way, was the absolute worst pain I ever encountered, hemorrhoids, hysterectomy, bladder repair, etc....not only was this trying on all of us, but EXPENSIVE! And with each surgery, my bowel issues only intensified. How old are you? I am 40. :o WOE! I am getting old.

Rosemary, I mixed the protein with plain water and the nesquick and my stomach is feeling okay. I am hoping and praying the pain was from milk and not adhesions....I also quit taking the flintstones multivitamin since it made my output a thick, green color. EWWWW I actually have HIGH iron and do not need any extra iron from a vitamin anyway. What is also weird is I could not take iron before my surgery either due to increased constipation.....It is looking like I may not be able to eat the offending foods I could not eat presurgery....which is okay anyway because I can atleast eat now....:)

LOL... it's funny you're still calling me always.. well, my name is Hodaya :)

yeah.... me tooo, i havn't had a vacation in.. 18 yrs!!!! i havn't even really thought about it, but after you mentioned it, i just thought "hey, you know what, me too..."

thanks so much for your words of comfort, hon. i just want to FEEL alive, i mean i do breath lol, but you know, just cuz you're breathing, doesn't neccesarily mean you're alive. we need to do stuff that make us feel alive, right?

oh, and i'm sure you're gonna find your prince charming!! well i did see your profile pic at the ibs forum and.. let me tell ya, you're a HOT looking mama!! you look so darn good, girl!!! seriously, you look great, how old are you? i'm 37.

Rottie, wow... this is the first time i read your full story, that was quite an ordeal you went through. i also wish i could have the surgery sooner and not go on with this for 17 yrs. but what can we do about it, right? but i'm sooo glad the surgery helped you and it was all worth it eventually, i just LOVE hearing of success stories :) :)

Hi everyone,
Back from my little cruise and had a great time....but eating on a cruise just isn't the same since surgery! I was careful not to eat nearly as much as I wanted....just never know what will happen. I used lomotil during the day and ate small amounts, and then ate normal dinner, but nothing later in the evening, except miralax and prune juice. At least I didn't gain the usual 5 pounds on this trip!!

Welcome to the newbies! I seriously doubt anyone will regret having the surgery; life afterwards isn't always perfect, but just being able to poop is such a relief. I'm on of the few that still have trouble "going" after having my colon removed, but I use miralax twice a day and that keeps things moving for the most part. I have pelvic floor issues and that seems to be the biggest problem. Life is still better than before surgery, though.

I'm so happy that Lizzie is doing so well. Finally! She so deserves a break.

Hodaya,
Glad you're doing so well. Volunteering would be a great way to get out and about again.

Rosemary,
My doctor was very thorough and I had so many tests before he'd even do the surgery on me; some tests I had to repeat. It took a full year of testing, biofeedback and more testing before he set my surgery date. The defogram didn't show any delayed emptying; however the defogram after surgery showed how slow I am...go figure!

Hope Lizzie is going to be OK.

I ate some cooked summer squash and it passed OK but I feel really gross! So I'm up late. Took some sleep meds and am setting clock for 10 a.m. I gotta get back on that Probiotic 8. Last we checked I have no lactobasillis in my intestines.

I gotta feel better for that LONG cruise Oct-Jan.

Glad you had a good one Janie. Yeah we gut girls save these crusie ships money on food that's for sure. All I eat is scrambled eggs. Rosemary

Allie - thanks for all your advice. Sorry that you, too, have felt really sick when using enemas. The Gastroenterology surgeon used to work at the Mayo clinic before moving back to the UK. In fact, he's close to friends with a couple of the consultants at Mayo and Cleveland clinics. Yesterday, he told me he was coming over to Cleveland Clinic next February. I guess it's for a conference as he's not moving. He's not a neuro specialist, but understand that whatever tx we need to consider, must be cleared by my neurologist, too. Also, I've study neurology, so he takes that into account when we're discussing things. Not too keen on the GI at the moment, he can be really moody at times, but definitely trust and like the surgeon.

Hodaya - I can totally relate to you about existing and becoming used to be alone. With me it's been because of the M.E. as I've been pretty much housebound for the last 6 years and was bedridden for almost 4 of them. Because of this, my body forgot how to do the simplest of things and I've had to relearn to walk. I can now manage about 5 metres on crutches, but anything more and I still need the wheelchair. I started some voluntary work late last year, just one hour and increased it to 6 per week, but then that had to be put on hold because of all the gastro tests etc. Planning to restart it next month. I've hated been alone, as I'm a people person, but haven't had any choice. Slowly getting better, and it's because the M.E. is improving that I knew my GP was wrong in saying the worsening chronic constipation was totally related to the M.E. and painkillers I need. I've no doubt that you will relearn how to live again. I went through that process after neurosurgery, and then went on to study at medical school. However, the medical career was then ruined when I became seriously ill with M.E, so now back to relearning to live second time round. I really hope you're able to start some volunteering, as I'm sure you'll find it rewarding. I'm roughly the same age as you too, as I'll be 36 later this year.

Yesterday's appointment with my surgeon went as well as could be expected. Like me, he is very reluctant to go ahead with surgery until we've tried everything else, so he explained the 3 plans. Plan A - try Prucalopride and continue with the daily enemas and movicol. If this alone doesn't work, and both of us feel that is a high possibility, I'll then move on. Plan B - Start Biofeedback and see if this plus the meds will sort me out. And finally Plan C - resort to a Total Colectomy. Hopefully I won't get to the latter, as whilst there's no guarantee surgery will work, we can guarantee it will cause a relapse, just don't know how badly, with the other health problems. The second Sitz test showed some of the markers in the transverse colon but most in the descending and sigmoid, but he reiterated that removing half of the colon wouldn't solve the CI.  Next appointment will be with the GI in a few weeks, and I shouldn't need to see the surgeon until November. Told him what I'd said to the GI that using 3 enemas in 24 hrs actually caused a BM, but nothing since. He agrees with me that because they've never worked before it is highly likely the bm was due to it being the first day of my period.

Allie,
WOW! THAT is the kind of doctor that is so very rare to find. I have fought so hard, not just with my GI issues, but my other chronic health stuff: "I am NOT a number on a page! I am NOT a disease! I am a person first, WITH a medical concern." I have fired doctors who do not get that, and who refuse to work with me as a team.

Your screen name makes it obvious that your ride (or would rather be riding!) I ride too, and LOVE my horse time. Even when I could not ride, I would still spend time at the barn with my horses. Yes, horses are therapeutic!

Pamela,
Glad you got some useful information. I think what frightened me most is that I did NOT have a good picture of what to expect post-op, and the doctors were just very general, or said 'everyone is different'. Not so helpful. Now, HERE is where we find HELPFUL! I'm glad that I can help someone else, after getting so much help and support here when I have needed it.

Oh, and while my screen name is RottieMom, my 'real' name is Paula. Only just now realized that I hadn't posted that!

cookie, my gosh, i didn't realize in how much bad shape you were in.... bedridden for 4 yrs!! that had to be tough. i'm so sorry :( i can't imagine having to learn how to walk again.. how long ago was it? were you at a hospital during that time, or at home? i admire you for being able to get your self up again, voluteering, studying and being active after going though such a rough time, it requires a lot of strength to pull your self up the way you did. i'm glad the M.E is improving, i hope from now on it'll be uphill and also upheal for you and you'll be able to accomplish the goels you had.

so sorry you had to put your medical career on hold like that.. it's so unfortunate that we all had to put our lives on hold like this b/c of our health, we all could have accomplished so much in our lives if it wasn't for our health. thank you so much for your words of comfort, it's kinda hard for me to get started, but i really must do it, or else i'll be going down hill. what kind of volutary work were you doing? i was thinking of volunteering in a hospital.

i hope things work out for you. you're so young to live like this, are you married? im not.. i havn't dated in.... 17 yrs! yep, exactly when the CI started.

Yes - you will always be "Always" to me ! ;-) lol Ooops - sorry I got you mixed up with Tracy ! There are so many posts going back and forth and with me being new on this site and not knowing everyone's history I got you confused  with Tracy ! lol It would be easier if you could reply to a certain individual's post here like you can on the other forum's website.

Thanks for the compliments, btw. I used to not feel my age but the longer this CI has gone on I have really slowed down and I want to be my normal energizer bunny self again that I remember ! I had the abdominal symptoms well before any car wrecks so no - they are not at all related - but good thinking on your part !

I hope this is my last surgery too - at least for a long time ! I am sooo ready for a break and the bills have been so consuming I have had to continue to work but have no $ left over for anything else. Hopefully thast will be changing as well and I am looking forward to a brand new start in 2011 !

pam, it's ok no sweat. i see, so it's not the car accidents causing you all your GI problems. i thought of it, cause i've heard of ppl getting constipation issues right after they had some kind of an accident - i've ran into posts like that in my surgeon's forum.

CI really takes over ones life, it's a nasty condition. i hope this surgery is a start of a new life for you.

Tracy, i'm gonna try coloplast for the first time tomorrow.. will see how it works for me. i don't think the swelling is b/c of something you did wrong with the barrier, no way. when i have an issue and i'm not sure whether it concerns my surgoen or not, i can call my family dr and can see him that same day, or the next tops, or i can call my stoma nurse and see what she thinks, i have her cell no. do you also have your stoma nurse's cell no?

after i try coloplast for a while i'll be able to decide what works better for me. but actually, now that i tried hollister's barrier with the adhesive spray, it works really good - i put on the wafer with the adhesive spray on last friday and it's still looking great and doesn't peel even a little bit. so if coloplast is no good for me, then this way is perfect enough.

welllllll, no i didn't do the enema yet lol..... yes, i so hate doing enemas :/ i never used them, only when required before tests. they've never helped me much anyway. but i really should, cause the pressure in my lower abd is getting so intense at times. oh yeah!!!! me tooooo, i just wish i could have my rectum removed and my anus stummped and have an end ileostomy, cause it really upsets me that i still need to deal with anything that still needs to come out rectally, i hate it too! but no surgeon will ever be willing to do such a thing in no way.. removing the rectum and anus is MAJOR surgery and won't be done if not that neccesary.. UGH but it's so anoying!

Tracy, pls keep us posted on that swelling.

WHAT I'M DEALING WITH LEGALLY....One of my defendant original surgeons has a new complaint on him with the state med board and the woman is working to file suit also. Long story short. He did not do testing, did a sphincterotomy (that it ends up she didn't need on retrospect of her case), she was impacted as he did not have her prep prior to surgery, she developed a vagninal/rectal fistula, he did not deal with it, her husband had to deal with it, the defendant doc finally did a temp ileostomy so she would "stop calling him". He was then going to reconnect her without seeing if the fistula healed or not. At that point she went to another surgeon who said she did not need the sphincterotomy in the FIRST PLACE! Same pattern as my suit. I came upon this info when I sent to our state med board for copies of new complaints on this idiot and to be sure mine was being sent out. Mine was along with hers and two other complaints.

I cannot believe our board is doing nothing with this dangerous surgeon!!! I even asked my atty, is there nothing anyone can do? Lives are in jeopardy!

I also had to do a bit of further work on my case today, but got it done. It was the final touches before depositions. I had just done 2 pages wrong and needed to correct some errors. My atty's associate is very nice and just lets me know what I need to correct. I will be an expert by the time I finish with this. I just pray for the health and the strength to see this through, stay well, and keep enjoying the time I've been given and hopefully get this defendant out of the O.R.

Rosemary