TOTAL COLECTOMY PART 25

Hello everyone....

So....I think I got some good news today. My surgeons nurse called today, and boy she must have gotten a talking too!!!! I have a long, nicer than ever message. I had to call the ostomy nurse today at work becuase of the burning, itching, and skin breakdown and he in turn called my surgeons office and got a script for me to see him tomorrow for some help with my situation. While he spoke with her he told her I really need to move up the surgery or get a revision becuase appliance wise there is nothing more than can offer to try with how retracted my stoma is......and she said my surgeon agrees. They called my biofeedback therapist and she said i am doing "fantastic" and I am seeing my surgeon on Friday @315p to schedule surgery. I am thinking it will be Sept 28 or the first Monday in October. I could do it sooner, but I have plans I cannot back out of nor do I want to through Sept 26. I am excited, nervous, and scared.

So my little bad news....I play co-ed softball with my work and I have had problems with my right quad (actually sat muscle that goes across quad from hip to knee). It was cold tonight and I warmed up, but hit the ball and while running to first base felt a awful pain that is all too familiar. I have torn one leg twice and both once (about three yrs ago....was taken away in ambulance and in leg braces for 6 weeks). Ha....this is so small in comparison to everything else, but I cannot hardly walk or lift my right leg. I think I may have torn it, but I am not getting in another full leg brace. I have enough going on!!!! Just the story of my life!

Janie- I am so frustrated for you....my biofeedback is nothing about food and actually I was told to eat less than 10 grams of fiber a day for a low residue diet because of the risk for obstruction with me. I have 75-90 min appts. and only 10 is spent talking, if that. She first does external manipulation (it hurts) but she pushes into certain  pressure pints in the pelvic floor until they release. Then we do about 15 min of internal manipulation. She stretches, pushes, prodes ( I really do not know what she is doing) but its like very long rectal exam. Then the machine and this is the rest of the time. We start out holding like your holding in poo and release wuickly which gets me to my resting tone of 2.5-3. She than has me bear doen and try and push the probe out as she has her finger on it. when I bear down I go up to about almost six, but no more so she said the mere 3 microvolt increase is very good. I go Monday evening and Wednesday early am to bring in some stressors of everday life. Hope this helps. I pray you can get it all figured out. I will say its worth keeping at before the big decision of a bag. It sounded so good to me as well, and although I had no choice...in the end, its much harder than I thought it ever would be. I, again, am only one person in the situation I am in though! and you could get one and feel great with no complications. Its a hard spot to be in....I just know from my experience I thought it would be different....I feel good, but so bad at the same time!

Judy- Glad you got into school. I bet everyone just wants to love on you!!! Good luck these next few days getting prepared. Thinking of you always.

Hodaya- Hope your going to be on your way home in the next few hours!!!! Keep us posted!!!

Marisa, Jen, and Jenise....thinking and praying for you all.

Lizzie

Lizzie, this is wonderful news - the sooner the better so that you can get on with life! I totally understand having to pick a date after your planned events - I too could have my surgery anything after Sept. 20th.. but I have a cruise in October and I can't cancel it! So - I'll wait too.

Hodaya, hope that doctor comes in and gets you out of that hospital! I KNOW I was able to get so much more rest at home. Looking forward to you coming home and sharing your story!

Hello, Hodaya that is great news. You will start to feel better, its just a long road!! I am still taking about two pain pills to get me through the day at work.

OK, so I went to the doctor yesterday, spent two hours waiting for him to come in. He then looked in my chart and started cussing like a sailor. The hospital gave me the wrong CT. I am so mad. I had to drink three bottles of that barium in one hour and it was so awful!! They gave it to me when I got there and it was warm plus I had to do it infront of about ten people. Then they had a hard time getting the IV started. I am to say it lightly, so TIRED of all the tests, all the poking, and being sick. I am so glad that you all feel my pain. Cuz none of my friends or family can understand. I have to call the office tomorrow to see what the next step is. I dont know what Ill do if I have to do that prep again.

Christy, My abdomen hurts daily. And I will also get swollen. I dont know what the deal is. Was your surgery open? I think it will take a long time for all those muscles to heal. You are doing better than me, I still cant walk very far without having pain.

I went for a dirt bike ride on Monday and wrecked really bad. I seriously thought I broke my leg. It hurt so bad. But, I managed to get down the mountain. Just have bruises from head to toe. It probably was not the smartest thing to do, but I had to get out and do something. Maybe I should do an easier trail next time. LOL!!

Thankyou for everyones well wishes and concerns. Geez Lizzie, I feel like such a winer when I read your posts. You are going through much more than I. They have got to have something they can do to help.

{Hugs to you all} Marisa

Marisa, I sure do understand how you are so stinking tired of all the tests! I can't believe they gave you the wrong one! Oh.. and the two hour wait.. what is up with these appointments! I understand possible an hour.. but I sure wish these doctors would stop double /triple booking us! So no answers yet for you... hope you don't have the same prep! And last thing - glad you are okay from your dirt bike adventure, next time go to the beach and enjoy the water!

Hodaya, not sure what time it is currently in Israel.. but hope it is close to when the doctor is due!

Christy, it's wonderful that you're doing so good! Hope the lower ab pain goes away...

To everyone else.. thinking of you all!

Speaking of recovery at home.. post op 2 weeks, I will be pretty much on my own. I have no small children and my darling husband will make sure the house is clean, laundry done, etc.. but after 2 weeks, he will need to return to work and won't be home with me till evening. I'm sure my parents will pop in here and there.. but I really should be fine on my own at the 2 week mark?

Hey everyone, Heard from the doc and good news!! Another radiologist was able to read the CT so I will not have to have another. YEAH!!!!!! The test shows that I do not have crohns. If the bleeding continues I will have to have a scope done to see where the blood is coming from.

Jenese-at the two week mark you should be getting around OK. I had a walker and it was great help to get me around. I just slept an emense amount of time. Since you do not have small kids, you should do just fine. Let your hubby do everything! Do not try to do household activities. Just rest.

Jen-sorry you are not feeling well. I totally know what you are feeling. I would have that full feeling all the time. I got all the way down to 116 pounds and have gained about ten back. I am 5'7 to that is a great weight for me.

Christy- I know I really should be more careful. But I love my bike!! I need to stay on easier trails. I am so glad you are doing so well and I hope that pain goes away soon. Will you have an ultrasound to look at the ovary? Maybey its an ovarian cyst. I had one of those and it got to the size of a baseball and burst. Ended up having emergency surgery to remove it.

Have a great long weekend everyone!! Do something fun!
Marisa

YYAYY Marisa!!!!! i'm SO glad it's not crohn!! i hope they find the source of bleeding soon though. hey all, i'm home finally.. it's been long 18 days at the hospital. i'm a lot better now and can finally tell you ladies all about it. well, i arrived to the hosp on the 16th, surgery was at about 8 p.m, surgery lasted only 2:40 hrs, they put an ng tube while i'm asleep, so that was good, the next day my surgeon came and said everything looked great so he pulled the ng out. i was happy. i was still on iv fluids and a tube for my unary (how do you call it?) the pain was UNBEARABLE! but i am known for not being able to tolerate the slightest pain. they didn't give me the pump after all and i kept asking for meds, but the meds bearly helped, we tried a few different meds, but nothing seemed to help me much with the pain. so i couldn't feel comfotable at any position, so i just kept walking back a forth in the ward, and i mean i was literaly walking nonstop DAY AND NIGHT!! i would take a break for 10 minutes tops and then continue walking. they gave me their strongest sleeping pills and it didn't do anything for me and i kept walking all night. it lasted like that for the first 7 days. i got famous through out the entire ward for the miles records i did there ha ha. anyway, by day 3 i started to feel very nausous. started vomiting uncontrolably. i didn't have a fever, i never had fever during my whole time at the hosp. they did a ct scan, found nothing, did a scope to see if the anastomosis narrowed, but it was not, so we knew it's an ileus. they needed to put the ng back in, but it was SOOOOO hard for me and i pushed it out (naughty), so they put me with children's ng. well that was inefficiant, cuz some of the bile came out through the tube, but not all of it, so i kept throwing up through my mouth as well. it was AWEFUL!! after i think 2 more days a different nurse came and she insisted on a real ng for adults, i was resisting of course, but she didn't give me a chance, it was HARD, but we made it, yeah, and ever since then i felt a whole lot better, cuz i didn't throw up any more. i stayed with the ng for 5 days, it was like 1 liter bile everyday. when i stopped, they kept the ng in for another 24 hrs just to make sure its over. at the same time i started going to the bathroom. at the first couple of days it was partially uncontroled and i did it in my depends, but then i had full control. at first it was mainly blood, then after about 2 more days i think it started to be stool (although i was not eating). apparantly, i was losing a lot of blood and my blood tests showed my hemoglobin dropped to about 7, when the minimum is about 10-11, so they gave me 2 transfusions. they finally took the ng and the unary tube out after 7 days... WHAT a relief that was!!!! told me to start clear liquids. the first thing they gave me to drink was apple juice... OMG!!!!!!!!! first of all, i drank a whole can within two huge sips, cuz i SOOO needed it after not eating or drinking for 9 days!!!! but what a mistake! the apple juice gave me 50 times diarrhea that day... it was a horrible day!!!!!!!! i must say that during the first week i was totally dipressed. first of all, let me tell ya'll, this is the HARDEST thing i ever did in my whole entire life, and i felt it's too much and that i'm not strong enough to handle this kind of thing, and kept asking myself how could i do this, this is a terrible mistake and i shouldn't have done it in the first place..... i was crying so hard about this regreting having the surgery, but now i can tell you all how happy i did it. it's hard, but it's SURELY, ABSOLUTELY, NO DOUBT about IT, THE RIGHT THING!!!!! and i can't stress it enough! so anyway, at day 6 i started developing edema and hematoma. starting from my lower abd, including my thighs and all the perimeum area was infected and swolen beyond belief!! it looked totally red and very warm to the touch. they assumed it's some kind of tissue infection (i mean under the skin or somthing) my dr said he's NEVER seen ANYTHING like this.. i mean this kind of swelling. well yeah, it looked really weird. he was affraid it had something to do with my veins, so he sent me to do U.S of the veins, it turned normal, so he started me with antibiotics through iv, within 2-3 days there was an improvement, mean time i also started eating and drinking on my own, so they took me off the iv fluids too - YAY, so he then said we can shift to antibiotics pills and i can go home. well i was so happy, but felt very strange pain, like pressure and like there's a huge weight sitting in my lower abd and pelvic. so i got home friday (excactly a week ago) at noon. managed to have dinner with my family, which was great, then woke up at 3 a.m for the bathroom and noticed my bikini line incision is pouring LOTS AND LOTS of green-yellow lava. it was pouring without controle, i called the hosp, and they said to come back and the dr will take care of it in the morning and i then can probably go home. well the dr came, he ripped some of the stiches... it was SOOOOOOOOOO painful, and then started to drain the stuff out. the whole thing was too traumatic for me and i kept screeming for another 30 minutes i think after he left. he put me back on antibiotics through iv. my viens are too skinny, so having an iv is very painful for me. anyway, i stayed for few more days till thursday and then was released... thank G-D!!!!! so i'm home now, i still take the antibiotics. i go to see my dr on monday. i just can't stop worrying that maybe there's still infection that needs to come out and hasn't. maybe i should ask for another ct scan. for now i'm sticking with the low residue diet. they told me i can start trying vegies. i ate salad with cucumber and tomatos w/o the skin and it gave me MAJOR butt burn (i guess it's more the tomatos than the cucumber that burns) so i think it's gonna be a looooooooong time till i try tomatos again, or fresh fruits and vegies. i have about 10-15 bms a day. about 95% of my bms are incomplete, but hey, at least now it reaches the rectum with no probs or having to take enormous amount of laxatives to make it reach the rectum..... so yeah!!!! i DEFINATELY feel it's MUCH better than the way i was before surgery. i just hope it works in the long run and i don't have constipation ever. that what scares me the most, that the constipation will be back.......... MY WORST NIGHTMARE!!!! o.k i think i covred all of it, he he. if you guys have anymore questions, please feel free to ask, i'll be more than happy to answer. and YEAH! it's so good to be back and i so missed all of you ladies too!!

Hodaya, it is great to finally know you are home and to hear your story - what an ordeal!! My questions are the same as Jen's - are BM's controllable? And do we all were depends in the hospital? Gosh.. I'll hate that! But you sound good, and that's encouraging!

Jen, I didn't ask my surgeon about the NG tube, but he made a comment that leads me to believe he puts it in if your get ileus. 3-5 day stay sounds very optimistic.. the very minimum I was told is 5 - but to plan on a week with no complications! I always seem to have that no luck thing too... but I am hopeful all will go perfect! It's hard to imagine having so many BM's - especially since I have trouble just trying to have 1 now!

Hodaya,

Wow girl, you've really been through so much. You poor thing. I was so afraid of what happened to you with the NG tube happening that I INSISTED they leave my NG tube in for 5 days. I was producing quite a bit of bile, so that was no problem. It's not a great thing to have, but I absolutely didn't want them to have to try to insert it when I was awake....so girls, if you're having surgery soon, be sure to ask your doctor about the NG tube and make sure they put it in when you're asleep and don't take it out too soon!!

What do you mean 95% of your bm's are incomplete? I'm so glad your surgery is over and now you can just concentrate on getting well!! I don't know about anyone else, but butt burn is just a way of life for me now. I have good days, but I have lots and lots of butt burn. DO NOT under any circumstances eat chili!!!! haha I made that mistake about 8 weeks after surgery; I thought it would be safe but I was miserable for 4 LONG days!!

Lizzie,
I know you're nervous, but just think positively. You'll be great after surgery and this is what you've been hoping and waiting for for so long. Let the countdown begin!!

Jenise,

My pup is great; she's so so cute. I had 2 dachshunds and they weighed about 15 pounds, I've never had a little pup like my Sophie either. She should get to 8 or 9 pounds though. I'm glad, because I'm always tripping over her now!! Does your pup still nip alot? Sophie thinks all toes and fingers are for biting! We start puppy kindergarten in a couple weeks; I had hoped to start earlier but she needs one more set of shots before we can start.

I've never heard of liquid fleet glycerin? Where do you get it? Do you live in the states? I'll have to look for them. I'm actually going to check online for them now so I know what I'm looking for! The problem with grape or prune juice is that it gives me diarrhea and I can't get to the bathroom quick enough at work.

You should be pretty good 2 weeks post surgery as long as you don't have problems like Hodaya!!! I came home on day 8, and on day 10 went to a cookout...I wore depends, but I went! I didn't stay in bed at all when I got home; I definitely took things easy and didn't do too much, but I never stayed in bed. In fact, I made sure I got up and got dressed every day. I really think that made me feel better...and I started walking within a couple weeks. I need to get back to walking, but it's so stinkin' hot here in Florida!


Jen,
I missed my biofeedback this week; it's over an hour away and there was a terrible storm and accident, and I just gave up and turned around and came home. I'm checking to see if there is anyone closer I can go to. The problem is that my insurance, which is usually great, doesn't cover biofeedback, and it's over $300 a session. My dr. office writes off all but $78.00, so if I find someone else, they may not write it off. I'm still going to check, though. When is your surgery? I'm getting so confused with so many surgeries coming up!!

Hope everyone else is doing well and hanging in there....have a great long weekend.

Hugs, Janie

Hodaya,
My goodness, what a terrible situation you were in! I feel like I can relate because it was horrible for me in the hospital as well (16 days). I had the ileus and ended up having a second emergency surgery. I think your doctor definitely made a mistake taking the NG tube out when he did. I never had the lower ab infection, I think you needed a drain tube to release that, I had that and it was to prevent infection. When they took it out for me to come home, they said they would put it back in if I developed an infection. That might be helpful if you don't get rid of the infection. I am so glad you are at home. Just take it easy. I broke down and cried as I was just reading your post. I called my husband and kids in here and read it to them, they are keeping up with everyone on here. I felt the same way you did (depressed) and thinking I couldn't make it and that I had made a horrible decision to have the surgery. It still causes me to cry because I remember how I felt. But I am with you and so glad that I did it now. I am like a new person. I like the way I look now and the way I feel!! Everyday from here on out will get better and better for you.

Lizzie,
So glad you have an appt for surgery. I will be praying for you!

Jen and Jenise,
I don't know about anyone else, but for me, when I get the urge to go in public, I can hold it for a while and have no trouble. I love it! It is so much better than before. I never wore the depends after I came home.

Marisa,
I am so glad you do not have Crohns. Let us know about the bleeding! I know it is a holiday weekend, but try and control yourself on the dangerous activities!! OK?

Judy,
Hope you had fun getting back into the swing of things at school this week!

Janie,
How in the world do you afford $300 everytime you go for biofeedback? That is ridiculous!! I hope you find someone closer.

Tracey,
How are you, havn't heard from you in a while!

As for me, my ovarian pain is gone!! I feel great and can't remember how many years ago I felt this good! It's only been 8 weeks since surgery but this was the hardest situation I have ever been in, but the best decision I ever made!!!! Love all of you and have a great holiday weekend!

Christy

Janie,

Fleet Glycerin is sold in most drug stores. There are usually 4 little bottles in each box. I use the suppositories, but when I think I need extra help but don't want to use a large enema I just use the fleet glycerin. I really like it better since it is so small but it packs a good punch...lol.

Jen

Janie, I'm in Florida too! Jen said it best - the fleet glycerin packs a little punch! The suppositories don't work well for me, either do enemas - but the little fleet glycerin usually does the trick! Wal-Mart, Publix's and any drug store carries them. I shop around so one store doesn't ever catch on to how many I buy! LOL As for my puppy - I think he finally just lost all his baby teeth and I notice a difference in the chewing. Something about our fingers they must love!

Christy, you're so positive and upbeat about your surgery - even after a real rough start! I'm going to keep thinking positive thoughts!! So glad that ovary pain is gone! I wonder if they get disturbed during surgery and cause a little pain?

Judy, sorry your doctor visit didn't go so well and that you face another surgery down the road! You do sound happy to be back to work, so that's great!

Thanks for answering our post op questions, it's so great to have this forum!

Hodaya, thanks so very much for sharing everything! I so appreciate it, and find it so helpful in know what may happen.. but I always remember we're all different! Oh thing - I am so surprised you only lost 8 lbs! But at your height, even 112 is thin, so you're lucky that is all you lost. Since my hysterectomy/repair surgery - things did get so much worse and my ab is always so bloated. My surgeon did say surgery will help, and once I get the stool out - the bloat should be gone.. a flat tummy - oh my, I sure hope so!

So Hodaya, how would you say you feel physically - besides the bowels? Is your incisions sore, are you extremely tired and fatigued? Do you rest and pamper yourself during the day, or are you out walking a bit? I can't believe that I have just 6-1/2 weeks to go before my surgery!

Hi Hodaya,

I'm so glad that you are feeling better!  It always surprises me when drs/nutritionists tell their patients to eat whatever foods they tolerate right after surgery as there are so many complications that can occur.  This is such a major surgery and one would think that they would be overly cautious.  My drs were and still are very cautious; they just gave me permission in August to start adding fresh fruits and fresh veggies but only one at a time and absolutely no stringy fruits or veggies and no salads, and it's been over a year since my surgery. But I'm very thankful for their cautiousness as I've had great results:)

Thanks everyone for the kind and encouraging words about my dr appt.  I'm actully not disappointed or bummed probably because I'm so excited to be starting back to work next week; I can't wait to see the kids!  By next summer though I'm sure I'll be a little upset as it will be another summer that is taken up by a major surgery,  that will be 5 summers in a row, that's the pits:(  Oh well, I'll get over it and move on:)

Hope everyone is as well as can be expected and I will talk with you soon.  We are getting a new computer next week so I won't have to keep using my daughter's and I'll be able to talk more.

Love you and am praying for you,

Judy