TOTAL COLECTOMY PART 24

Judy,
We must have been posting at the same time! You poor thing. I know you are just so tired of this. Is C diff that difficult to get rid of? I will definitely keep you in my prayers!

I'll copy Hodaya's post for you:

o.k you guys.. i'm SOOOOOO excited to tell you all that i spoke to the psych just a while ago and.... he said i'm approved to go to the surgeon!!!!!! GOSH i'm so excited and i just can't believe he actually said that, i mean he totally surprised me, i really didn't expect to hear him say that. i just feel so happy it's finally happening.

i'm gonna try to make an early appt, cause you know, i really want to do it while it's still summer b/c of my lungs.

tinkerbell, it's true, the yrs of constipation is what's causing our colons to be so loopy and our rectums to drop. the extremely larg amount of stools that accumulates in a colon that cannot contain it, causes the colon to strech and therefore become redundent and the mass of it on the pelvic + the straining causes the rectal prolapse and rectocele. and all together, there's also damage to the innervation of the rectum.

i'm sure your drs will help you to make a decision you'll be at peace with. i wish you all the best, waiting for your update.

i wish i could also get that book, maybe my sister who lives in San Diago can send it to me. is it a real thick book?

Janie, you're in my thoughts and prayers and i hope things get better for you soon. i'm glad you don't regret the surgery and things are better now than before.

Tracy, yes, it is also called colonics. it's not painful at all, maybe only a bit uncomfortable, but really not to bad. they sure suck all the water and poop out. it's a 1 hr treatment in which they fill the colon with the water then suck it out along with the poop, then repeate it for 3-4 times during this hr. most therapists like to leave at the end of the treatment a moderate amount of water in order to keep things flowing, like not to leave it too dry in there. don't worry, this insignificant amount of water won't bother you. it's better to leave it a bit wet in there. but maybe you should ask them to leave like half of what they leave with other ppl.

these treatments are quite expensive, but in your case it'll be worth it. but whatever they tell you, don't let them convince you to go on a treatment program, like doing it every week for a while then once a month. it's bull don't do it. they managed to fool me about 2 and half yrs ago and sucked a lot of money out of me too along with the poo.

but i must say, after a treatment you feel really cleaned out.

Jen, it's great that the markers went through the smalls quickly, it's definitly a good sign for you. getting a second opinion and even a third is always good. i hope you're able to make a decision and be at peace with it.

Lizzie, how are you doing? are you better now?

Marisa, hope you're o.k.

boy.... i just can't wait to see the surgeon!!


--------------------------------------------------------------------------------
Hodaya

06/05/2007 - STARR procedure
colonic inertia w/ pelvic floor dysfunction

Hi Tracy, so sorry the botox didn't work. I wanted to call but I thought it was too late. July 30 I go to Ireland if all stays well; I pray. "Case" is moving along; yeah! Good luck with the next doc appt. Good luck with the decision about the next step. Maybe it would free you. I just got back from the 4 month world cruise in April and am now heading off again for a month abroad. If I get no adhesion reobstruction I'm good. SO far so good and it will be 2 years August 6th (my second birthday so to speak). SO life can be good with my arrangement. Best of luck, Sincerely, esoR

Hi Lizzie, I'm pretty new to this board. I had to get a PERMANENT ileostomy due to life-threatening complications from what turned out to be an unneeded surgery in the first place. Due to massive scarring I permanently lost the use of my rectum, colon, and for 7 months the use of my small intestine. If not for an extreme adhesion lysis and permanent ileo I would have died. As it is I've done a ton of traveling, and so far so good. But, my gosh, I feel for you with the retracted stoma. SOmething must be done for you. In the meantime contact byramhealthcare.com and talk to one of their on-staff ostomy nurses. There are certain appliances and products they have specifically for retracted stomas. Sort of a covex plate I guess. I pray I don't have to find out. So far so good with my stoma. But you have to get a handle on the burns. The very tiny ones I get occasionally are painful. After you get them cleared, have you tried AllCare adhesive wipes? It's like putting a layer of shellack on your skin. WHen it dries you put on the wafer. The all care protects your skin from any irritation from the wafer. Then you can squirt some stomahesive powder right under the stoma in that little area of skin between the hole you cut in the wafer and your stoma. Then you can apply an eakin seal. I use all this stuff and get 10 days out of an appliance set. (But I don't have a retracted stoma, so our situations are different.) But contact Byrams and I'm sure they can set you up. I am a Convatec customer, but they also sell from Hollister, Coloplast, and other companies. Good Luck, esoR

Marisa thanks for the info. on the barium enema I had read a little on it last night and it doesn't sound fun. I am worried about holding it in....it doesn't act like an enema does it where you want to push it out? How long does the process exactly take? I am really dreading this, but I have no choice in the situaion since they need to see where the colon is laying. Also is the prep as extensive as for a colonoscopy?

Jen

do you all remember jjfrom.. something? i've been thinking about her a lot lately, last thing she said was she's going for a colostomy and then never came back. do any of you know something? it's just so concerning. i hope she's o.k.

Hi All,

Tinkerbell - Thank you for the control panel tip, that is what was wrong; it's so strange that I would get her posts sporadically though. I must have accidentially hit the wrong thing.

Hodaya - YAY!!!!!!!! Our prayers are once again answered!!!!! I'm so happy and excited for you to finally be able to have your surgery and experience a life without it's total focus being on having a BM or should I say not being able to have a BM! I hope and pray they can give you a surgery date soon.

Janie - C diff is very hard to get rid of.  We made the 3 hour trip once again today and bless my GI, he is so very sweet, he truly must be 75 yrs old and works 6 days a week.  I gave him such a hard time last night about not coming up there and he kept saying , no, I will see you tomorrow and I said  kept saying no, just call something in - needless to say he won lol ... anyway he did some bloodwork and now I have to stay on the BRAT diet through the weekend and give them 3 different stool samples - fun, fun -lol... then we'll see if I'm back on antibiotics once again.  The sad thing is is that I did the tapered dose that usually gets rid of it and my husband santitzed the whole house and we took every precaution to try to get rid of it...very frustrating...I just hope it's a viral thing.

Jen - I wish you the very best with your surgery and just wanted to say that if your dr is recommending it them you must he must feel you would REALLY benefit from it.  My dr had to have all kinds of documentation as to why I needed the surgery because I didn't have cancer, crohn's, or colitis; he had to prove that I needed it due to how it was affecting my health.

Hugs and love to you all,

Judy 

Marisa the doctor called today and scheduled my barium enema for Monday, August 3rd. At least I don't have to dread it for too long. I am not looking forward to the whole tube up the hiney thing because I have a small hemorrhoid which I imagine will be a painful situation. When the surgeon did a digital exam it was not pleasant so I can imagine this will be ten times worse. Oh well so goes the life of constipation what else is new. I am just ready to get this over with, get my second opinion, and if they agree just have the surgery and hopefully start a better way of living.

Honestly if my family and friends didn't think I was crazy for even thinking about surgery I probably wouldn't even get the second opinion. The last thing I need to hear from anyone is I told you so. If they only knew what it was like to live the way we do. They have NO CLUE!

Mary, I am so sorry to hear this. Did they say what stage the cancer was? I have read that ovarian cancer is hard to detect, but have heard of the ca-125 test. WOW, it is a blessing that you were having the total colectomy, huh? How long did it take for them to agree to do the surgery? Because like Judy said, it seems like the doctors need alot of documentation to justify doing something so extreme for what most doctors believe is "not enough fiber constipation". What they fail to understand it that constipation is not the even the right diagnosis for us...it is colonic inertia. Did the doctors think the cancer is what made you have colonic inertia? How are you doing now? I will be praying for you.

Judy, How long does it take for them to dx the c-diff? I know this is a different infection, but a couple of years ago, my son had MRSA...it was dx very late in the game and got into his tendon sheeth and bone. It had to be operated on and left open to heal from the inside out. He was very ill and had to have a PICC line inserted and had to have vancomycin through it for several weeks. I had to learn how to administer it. Does vancomycin kill c-diff? Is it available in pill form? Because the vancomycin saved my son's life...but what is ironic, he had a rare side effect from it and it damaged his liver and he can never have it again, but he is well now and his liver healed very nicely. I just want you to get rid of the c-diff once and for all. :)

Marisa-c diff is an intestinal infection mainly caused by antibiotics.  I was given too much and the bad bacteria wiped out the good bacteria. We-meaning anyone with a colectomy need to inform any other dr we deal with that we have had a colectomy in case they should put us on an antobiotic because we need to be on probiotics while we take the antibiotics and have to be careful with them.This infection can cause you to have a permanent colostomy or to get sepsis if not treated early enough. My dr knew about my colectomy but kept saying my symptoms were from my kidneys surgery, he should have asked for a gi consult.

Tracy- it's not hard to dx, they have to do stool cultures, the first time my gi took them while he did a scope but this time I have to give them to the lab, lots of fun, I thought I was done messing with my poo when I had my colectomy lol, hopefully this will be the last time.  Vancomycin is the cadillac of drug to use to get rid of c diff & they used a tapered dose for 6 weeks as well as 2 weeks of flagll so we thought it would be gone for good but the spores can live for up to a year and I can get it back at any time.  It's just a pain because we and have been extremely careful with everything and have taken every precaution possible not to get this back and it still returns, very frustrating.

I hope you can stay comfortable enough to wait until next summer; I too have to always work around a summer schedule and sometimes it's a pain because I never really get to enjoy a summer but someday I'm looking forward to having one where there is nothing wrong with me, hopefully next year will be the first since 2003.  I will pray that you will be pain free until then.

Jen - I'm sorry that your friends and family don't really understand what you're going through.  I've always had very supportive family and friends; they could never understand how I could go for weeks without going poo and still smile.  I seriously thought it was normal until I met my husband and then when he went everyday I told him there was something wrong with him lol.  Believe me, when you and Tracy have your surgery you'll be amazed how you fell.  It's like you really didn't know how bad you really did feel and look.  Your always in my prayers.

Gina - I'm soooo sorry to hear about the ovarian cancer and all that you are going through.  I will pray for you and your healing and that the dr will be able to reverse your ileo.

Amanda, Lizzie, Janie, Hodaya - prayers, hugs and love to you all,

Judy 

lol-I know Jen, I used to think I could fix myself with all of the latest and greatest things that came out on the market before I knew what was actually wrong with me.  Some of my friends would laugh because they would eat one fiber one bar and be in the bathroom 2-3 times and I  could eat several and it didn't even produce gas.  They just couldn't believe things could stay in there that looooooong.  But like I said I never realize I was different than others. Then I kept getting sick with stomach issues that led into the whole constipation thing when the drs said this just isn't normal and started giving me all kinds of meds to try to get me to go and NOTHING worked including preps for colonoscopies. But then I was very fortunate in that from the time my 4th GI recommended surgery until it actually happened was only 4 mos. and that was mostly because I had to go to a new GI who is the absolute BEST!!!!! that did all of my testing to make sure I truly had inertia. The reason why I switched GI's from the 4th to the 5th was because my 4th didn't do the CI testing- it's too bad because he was super HOT!!!!! lol. Oh well now I have the very old super smart(he writes in medical journals all the time) GI that takes extremely good care of me and gives me hugs and calls me just to check on me so I guess I'm much better off.

I hope everyone is having a GOOD weekend!  My brothers have come into town (one from Ohio and one from PA) for this really big party that she and my stepfather (my dad died at 58 of heart attack) have every summer at their camp; I'm not going due to the c diff crap - no pun intended - am kind of bummed as I only get to see my brothers at Christmas and didn't get to see the one from Ohio this year bcause of his work schedule; also my nephew just got home from his duties in Irac and Afganistan -sp. -he's supposed to be there too.  This whole poo thing is REALLY the pits. 

Ok now that I've rambled on and on; sorry it's just that I know you all will listen and understand.  I'm just so tired of this and I don't say ANYTHING to anyone, I just go on and act like it NEVER bothers me but this past couple of months has been really tough.  Alright I've had my couple of tears, I'm okay now, thanks.

Love you guys,

Judy

Judy, i'm glad you can see my posts again :o)
gosh i'm so sorry this c diff is still giving you such hard time. i was so glad to hear when you said it was finally under control.... you're right, it's so frustrating!

i know what you mean about not being able to do things and be with your family. i'm missing a lot too for the past 2 yrs and i'm not even going to family occasions any more b/c i'm in so much pain all the time, esp in the evenings. the evenings are the WORST, and by the time it's 9 p.m all i want to do is lay down. this thing is isolating me from the world, it's soooo sooooo sad!

and you're right Jen, it's so frustrating that lots of ppl around me don't understand. yeah my close family do understand and they are very supportive, but some have hard time getting how hard it is to live like we do.

thanks Judy for your encouragment! it just doesn't seem real yet. i guess when i see the surgeon that's when i realize this is really happening!!

one thing i'm worried about is that this surgeon talked to me a yr ago about the surgery, but...... back then he was planing on doing a 2 step surgery with a temp illeostomy and then creating a j pouch, which is TOTALLY not the procedure i need, so i only hope now that he knows what's the right procedure for me. i guess i won't be able to find out about this till i see him, cause if he's still planing on a j pouch, then i'm gonna have to find another surgeon and that will mean going for at least few months till i get approved for surgery..... this is all seem too complicated right now!

How kind of all of you to comment on my posting. Thank you so much for taking the time to pray for me. That means more to me than you know. Hodaya, they were going to take out my rectum when they took out my colon, your right. But when they went in and saw cancerous tumors on the outside of it, they thought MAYBE that might be the reason I failed the defacating proctogram test that is done to see if your rectum is working. So, they decided to keep it in. I was suffering for 17 years with chronic constipation before I had a total colectomy. It had gotten to the point where I couldn't even get diarrhea out of me (when the laxatives would turn the stool to diarrhea). I'd just be bloated with it for days and that was really painful. I suffered that way for 2 years until I decided to have the surgery. No one would support me in having the surgery. Not my family, not my husband. And my surgeon kept saying, "When you decide you want it, I'll do it. But it has to be your decision." I prayed about it and felt God was leading me to do it. That is why I scheduled it. And then they found the cancer. Now I keep thinking, "I'm so glad I didn't listen to everybody."

TDR , it is stage 3C ovarian cancer.

Thank you all again for your support and prayers.

Gina

Gina,

I'm so sorry to hear your news!  I remember reading your posts from last year and wondered where you had been.  I can only imagine your shock when you woke up from surgery with the news.  Add me to the list of those praying for you, and thank goodness you followd your heart and made the decision to go ahead and have surgery. 

Judy,

You have always been there to help everyone when we were down, while all the time dealing with your own issues.   You certainly have earned the right to cry a little!!   I know how it feels to miss out on fun things, to have to make up excuses for invitations you can't accept.  I don't think anyone has a clue how "constipation" can effect your life.  As I'm typing this, I'm carrying my laptop back and forth to the bathroom with me , because I have to go and can only get little bits out at a time.  It is just so frustrating.  For some reason today has been rough; I must have gone at least 25 times, but it's one of those days where I constantly have to go back and strain some more.  It's been a few days since it's been this bad.  Tomorrow is another day though!

Tracy,

As bad as the laxatives make you feel, you don't want to ever get that blocked again.  Have you ever tried senokot granules?  I took that for years and years, and it didn't cramp me (at least not very often) the way dulcolax did.  It got to the point where I had to take more and more to work, but at least once a week I got cleaned out good...at least most of the time. 

Hodaya,

Make sure you and your dr. are on the same page about what surgery you're going to have!  You don't want to wake up with a j-pouch!  I wonder why  the dr. would have planned to do that?  I hope you can get everything planned and started soon.

I think most doctors are very hesitant to do this surgery for constipation.  My GI never thought it was a good idea; his answer to my problem was to drink more water and exercise.  He didn't have a clue, even though I had gone to him for 15 years complaining about how horrible I felt.  Even when I went to the colon surgeon, he was very thorough with testing before going ahead with the surgery.  In Dr. Chris Lahr's book, he says that only a very small percentage of women coming to him for constipation are candidates for surgery.  After going through the surgery, I understand why.  It hasn't been  the total answer for me, that's for sure.  However, I am still only 4 months out, and I'm hoping that as time goes by things will get better.  Most days I still think surgery was a good thing; days like this I wonder what the heck I was thinking!  BUT that's just me and my stupid pelvic floor problems....exactly 29 years ago today I delivered my 10 lb 3 oz son, and today at his birthday party, as I kept running upstairs to his bathroom, I thought that if only I'd had a c-section back then, maybe I wouldn't have these problems today!!

Everyone, take care......

Janie

Janie, this happens to me too. I use suppositories, go a little, use some more suppsoitories, go a little more until I have spent a good many hours in the bathroom getting little results each time.....then, before I realize what has happened....I am full of poop because the bathroom trips have only resulted in getting maybe 10% of the total poop out of my colon. For me, is this the anismus or the colonic inertia or a combination of both? I just don't know.

I never saw any senokot granules...I will ask my pharmacy if they sell them. Do they taste bad? I am sure the reason I had such cramping is because I took a combination of stimulant laxatives! It was really bad....UGH

I just want to be free of this problem. I am tired of my entire life revolving around pooping.