TOTAL COLECTOMY PART 31

Lizzie,

Praying hard for you from Peru.  Take it REAL slow on food advancement after surgery.  Don't let them push you into solids too soon.  So far I feel OK on cruise, but seem to dehydrate easily as I'm in such hot climates now.  I've just been eating yogurt, milk, Orange Juice, Cream of rice, cream of wheat.  One is able to sustain on very bland food.  Have energy for all the side trips and so on plus nightly dancing.  So not to sweat it if you don't get into the "real food" for quite awhile. You can get protein from quite bland foods.  I also mix "Show me the Whey" protein powder with yogurt.  Brings the protein value from 6 grams to 28 grams.  Hope they can deal with your PICC line issue.  Any arrangement with small bowel needs for you to drink LOTS of liquids (when you are able that is.) 

You deserve to have this work.  Once again, according to your post, it's one doc's opinion against another's.  I pray that your surgeon's opinion is the correct one and you have final success and get to put this all behind you.

All my prayers, Rosemary

Lori, if i do ever get to see this surgeon, i'll definitely ask him if he did his fellowship under Dr. Wexner. that would be so funny lol, such small world. yeah.. it's a very cruel joke, and you know, i don't think drs have figured out the gutt mistery yet at all and are far from having a full understanding of it. it is G-D's creation and far from human ability to understand completely - at least that's what i believe. i'm curious to know what dr Wexner thinks about you having this procedure. Lizzie, honey, please don't stress yourself writing to us like this right now, you must focus on resting. it all does sound promissing, esp cuz you said you never needed any laxatives while you had the ileo, so it really looks like your smalls motility is good and that's really encouraging and promising. i realize that having an ileo or a k pouch is not easy and it has it's own set of issues i suppose, so either way, there's no easy way... but maybe it's better than struggling with a non functioning rectum..? i don't know. i'm going down fast with my bms. i only have few crumbs in the morning and then even less in the evening, not much relief. if i eat a potatoe or bread/rice every day, i won't go to the b/r at all and the only reason i still have some crumbs out is b/c of the soft-liquid diet, but even that's slowing down too much. wish i could be there by your side to support you or just to simply give you a hug. every surgery is scary, but you really have no other choice, cuz you're in an impossible situation and you just can't go on like this. something has to be done and we're all praying it works the best for you honey. i know i should do something already, but i don't know why, i'm like numb, like i'm becoming so apathetic and accepting living like i've been used to live for yrs. maybe i'm just loosing my faith. i'm also hoping that maybe it'll improve on it's own..... i don't know. it's SO hard for me to pick up the phone and make the appt to the dr. i'm so retarted. also i'm so scared of using laxatives on a regular basis...... conclusion - i'm just scared of anything, even my own shadow lol. how do you call this crisis? do you think it's denial? or what is it going on with me? anyway, i'm rambling all kind of nonsense here.. someone STOP ME!!!! LOL!!! Lizzie, love you so much little lady, and admire you for your stregth and courage for not giving up and presueing life to the fullest (did i say it right?).. gosh i'd like to be there with you right now!! all that happens, happens for the better, we're in G-D's hands. praying for you my love ((((((HUGS))))))

Tracy,Butterfly, Rosemary and Hodaya,

Maybe it is rectal spasms that I have going on. I am already on Flexiril (Muscle Relaxant) because of another health issue.

The only issue that I am aware of regarding my rectum is about 3 months ago I had what the gyne called a recto-vaginal fistula. I actually had bm coming through my vagina (I know how gross!). My gyne got me in right away and looked inside my vagina and he could see that stool (diarrhea) was coming out, but he could not find the exact place it was originating from. He put me on a couple of antibiotics and it just stopped happening, but there was never any pain with this. I have never had blood come from the rectum either, except for last night from the butt burn.

I called Walgreens and they had some calmostine on hand. They told me many people ask for it so they keep some in stock. I am on my way to get this right now. Thank you so much Butterfly for the name of this medicine.

Anyway, Lots of Love to all of you, my friends!

Kristen

Hello everyone,
Kristen
You'll love the calmoseptine cream. I tried several others, but nothing comes close to being as good as this is. I always keep a tube at home, one in my purse and other at work!

I don't understand the rectal pain. I know after my colectomy I also had rectal pain after a few months, but it was because the rectum was full of stool I couldn't get out. You don't have that problem, so I don't know why it would hurt so much. It is pain from going so much, or sharp pains? I had rectal spasms twice really bad and that was horrible. I hope it stops hurting so much!

Lizzie,
Good luck sweetie. I pray things go well and this is the answer you've been hoping for. You're a true inspiration, and I can't wait to see how you like your k pouch. You'll be the first one here with one, I think. You can pave the way for the rest of us!!!:)

Hodaya,
Try the Miralax!!! There's so reason to be so miserable. Honestly I don't even think of the miralax as a laxative because it's nothing like other laxatives I've taken. It's just like drinking water. If you can't go, you need to try something and miralax could be the answer. You won't know unless you try. It's not like giving in and using laxatives. Look at how many of us still need to use it--trust me, it won't hurt you and it might actually help. I sometimes wonder how long it might work too but the way I see it, as long as it works, it's better than not taking it at all. If and when it stops, I'll worry about it then. For now it helps alot, so I really think you should at least try it. Why be miserable if you don't have to? And why think about an ileostomy if all you have to do is drink something once or twice a day? Give it a try!

Lori, I'm praying you'll get good news after your test results come back. Like you, I'm very anxious to see how Lizzie does with the k pouch. There is actually a doctor at the Orlando colon and rectal center who does these...his name is Paul Williamson, I think. He's not my doctor, but one of the partners. When I see my surgeon next month I'm going to ask about it.

Jenise,
Are you still taking metamucil at all? You know I said I had tried metamucil months ago and it worked great for a few weeks, but I had to start. Miralax makes my stools so liquidy, so a few days ago I started taking about 1/2 teaspoon of metamucil when I take the miralax in the morning and evening. So far, so good. My stool is very thin now, but not so liquidy and it seems to help push it out a little. I can only take very little metamucil. I keep trying different combinations and they all seem to work for awhile. Hopefully this will continue!

Jen,
Thinking about you and praying you'll get home soon and be able to stay home. You've had such a horrible time. I'm so sorry you're having so many problems.

Rosemary
Glad you're enjoying your cruise...sounds like fun, We have friends who just got back from a 7 day western caribbean and they just booked an 8 day for October, and I think we're going to try to go with them. I love cruising, and can't wait to get back out there!

Marissa, Tracy and anyone else I missed, hope you're doing well and have had a good weekend.

Janie

Kristen, I bought the calmostine too - worked wonderful and really soothed the sore bottom so well! I have had a lot of gyn surgery and repairs, with the lasted on being a rectopexy and repair of the rectocele. I can feel pressure, but it never hurt having a BM - (unless I was just raw from the diarrhea...) hopefully the ointment helps, but if not - you should be checked again. Those recto-vaginal fistula can sometimes be hard to fully clear up, and you may not be fully healed. Often they need extra estrogen or.. I shutter to tell you - surgery! Make sure if you're still in pain by Tuesday - you make an appointment.

Lizzie, with all these prayers going your way, I have faith that things will work out for you. You do deserve this!!

Janie, I must have been posting at the same time. I totally stopped the metamucil.. maybe I was just taking way to much - but I had a hard time going. I do eat a lot of fiber, and I hope if I do that and take the MiraLax again like I was (2 x's aday) I'll be okay. I seem to be doing fine again, thank goodness.. my only issues are that I seem to have to push more now.. and I stop myself so that I don't ruin the rectal repair.. they told me not to strain, but it just never comes out easy - most of the time. I definitely have that "full" rectal feel at times.. and then weirdly - at others I didn't realize I needed to go until I sit down to pee. But on a good note - I only seem to go 2 maybe 3 times a day, but on a bad note - I have used fleet more then I have wanted. When I use it - I go just a little and then if feels like my rectum is falling out - tons of pressure - so this week, I'm making myself NOT use any.

Rosemary.. I didn't want to scare Kristin, but you're right. Those fistula can be hard to heal. I worry so much about getting them, as vaginal surgery is one major factor, and this is my 3rd in the last 10 months.. and more on the back wall. Some women don't know even if they have them.. stool doesn't always come through, sometimes it is just air - or "vaginal farts". Sounds like you're having a great time.. keep drinking!

Jenise,
How long after taking the miralax do you go? Do you take it before meals or after? I've been taking it first thing in the morning, and if I have my coolatta I go about 2 or 3 times, quite a bit. If I eat during the day, I may go a little more, or I may get the rectal pressure, I just never know how it will be. I take the 2nd dose after dinner and then about 1-2 hours later start going a few more times. I just wish I could go 2 or 3 times, but I still spend alot of time in the bathroom. I also have to strain sometimes, but I try not to. I'm using enemas too (usually only during the day if I eat and don't go) but like you I'm going to try not to this week. It's very discouraging but still in most ways better than before.

Wish we were on the cruise with Rosemary!!!!

Hi Kristin, Since you and I had the same surgery (you had most or all of your colon removed, right?) I think I can inform you a little about the cause of the burning. First let me tell you the good news: I am now 10 months post-surgery and I am feeling healthier and stronger every day. I had abdominal pain, after eating and tons of constipation since I was 20 yrs. old! Now I am 57 yrs. young and finally I think many of my health issues have been solved! No more pain except for the "butt burn" during and after a BM. It really does burn like hell sometimes and continues to burn even after I use 2 "cleansing wipes" and some Desitin. The problem is, lots of the burning is happening inside the rectum so the only way to stop it is to get in the bath-tub or to take a "sitz" bath. My doctor said that the waste that comes from the small intestine is very "acidic" and also contains Bile Salts. The colon normally puts a mucous substance on the stool so it doesn't burn on exit! It's too bad we have to even know this much about the workings of our bodies but at least now I know why it burns so much! I can tell you things that make it happen less often: Eat rice, mashed potatos, white bread, cheese - as part of your regular diet. I know that isn't a real healthy diet so if you do eat more interesting foods that are spicier then try eating several Rice Cakes a couple of hours later; this seems to help! The only concern I have for you though, is if you are finding that your bowels are already "slowing down" after having had a colectomy. For me that has not happened and that is why I eat the "binding-type foods," like rice and bread. These foods have the added benefit though, of reducing the burn . . . at least that's what seems to happen for me. Good luck and I hope this info. is helpful for you! Also, everone told me about "Calmoseptine" so I tried it. Is that the same product you just bought? Unfortunately for me it didn't work to stop the burn. Tell me if it works for you. CVS stores now have a new product I am trying. If the Calmoseptine doesn't work, tell me and I will send you the name of CVS' new product for this problem!

Gilda

Hi loves...

Its the night before surgery and I am so scared and nervous. I feel sick from nerves...but THANK YOU all so much for the prayres, love, and unconditional support. I have to have an ultrasound in the am on my PICC line as they are a bit nervous its redenned and firm and not drawing. I do not have a fever, thank GOD!. Its still flushing for now, but its getting harder each time and I have NO veins! The surgery is around noon and thats all I know and should last 3-5 hrs. I will try and have my hubby post how it goes. If he doesnt...I will asap. I miss you all so much. Tomorrow is nealy 2 yrs to the day from my first surgery. I miss you all so much...lori! I am sure there is someone at CC-FL who does the k-pouch and if you would like me to ask Dr. Dietz I would for you as I am sure he would know best. I did find out my surgeon studied under Dr. Fazio for the pouch explicitly and he was the best of the best! I will be here for 7-10 days if nothing bad happens (I have a bad track record as we all know) and I will go home with a tube for one month while the pouch stretches. I will definately tell you more when I learn from this and tomorrow when I go over the consent. I wish I had all the answers for everyone and I hope I can show you all a new side to this surgery. LOVE YOU ALL SOOOOO MUCH! I will check in if i can before I go down tomorrow.

Lizzie

I am still thinking of you Lizzie! I hope you are resting or sleeping by now (I am in California and I know it is 3 hrs later in Ohio). I hope to get to meet you sometime in the future. I am from Grand Rapids, MI and go there most every summer for a family reunion. I know you said you live there. You are going to do just fine Lizzie!

Take Care,
Gilda

Lizzie, but now you are on your way.. hopefully you are peacefully sleeping and they are getting ready to begin things! Thoughts and prayers are with you!

Lizzie,

Praying for you.  You are in surgery now.  I'm taking off on a 2 and a half hour uncovered boat ride off the coast of Pisco Peru.  Hotter than H--- down here.  Will hydrate and wet my hair down.  May need an IV when I return.  SOunds like a set up for dehydration.  Am a bit nervous but don't want to miss out.  WIll be thinking of you as we all are.  Love, Rosemary