TOTAL COLECTOMY PART 25

Hodaya I am so glad to hear from you.  I have been so worried because it has been so long.  I will be anxious to hear all about your surgery when you get stronger.  You are in my prayers daily!

Jenise you are right it sounds like me, you and Lizzie will be one after the other for surgery.  I have been getting all my paperwork in order with the State of NC (my employer) so that I will be covered while out.  Letters from the doctor, FMLA forms, donated shared leave forms, etc...so much to do when you might be out for awhile.  I monitor 68 childcare facilities in my territory so I have to get all that covered while I am out.  WHEW there is a lot to do before October 26th not to mention FAMILY life. 

Judy I hope you are having a great vacation!

Lizzie it sounds like you are at a great weight, and I am glad the biofeedback is going well for you.  October will be here before you know it.  I am struggling with losing too much weight.  I am not eating well because when I eat I feel bad so I have really cut back in order to feel a little better between my weekly bathroom trips.  I am 5' 6" I have gone from like 125 to 116 in the past two weeks and still dropping.  I am worried about losing too much weight especially after the surgery.  I don't want to look sick.

Jenise how big a chance did the doctors say that the small bowel will take awhile to wake up?  and what does that mean...vomitting?  I am really worried about the possible complications.  I need to try to put all that out of my head.  Do you find yourself thinking about it every waking hour???  Sorry you have to do another defecography.

I hope everyone else is doing well.  I am so thankful for this forum.  Well I better get the kids ready for bed.

Jen

 

Hi Jen & Jenise,

I know that you're really worried about your bowels waking up after surgery; you might want to ask your dr if he gives you anything to help this or not.  My surgeon is very aggressive with this surgery and he gives you an NG tube during surgery, takes it out the next day & gives you the choice of an enema or MOM to get the bowels started that day as well as having you get out of bed.  My surgery was at 6 at night and I was taken to my room at 1 in the morning and was walking the hall around 11 in the morning.  I had an open surgery and had many tubes as well as an epidural and catheter & drains but he wasn't too sympathetic and I'm glad now.  I ended up staying in for 5 days and had a great recovery.  So it might be worth asking if they give something to wake up the bowels, it might help ease your fears.

Hope this helps some. Always thinking of you:)

Hugs and love,

Judy

Marisa-So sorry that you are feeling badly. I hope they figure out what is wrong on Tuesday so that your dr can help you; I will be praying for an answer and for healing.  Kids sure are funny aren't they; they take advantage when they know you are down.  Mine were like angels growing up, seriously:); but now that they are 20 & 22, I have absolutely know idea who raised them, they do things that I never would have dreamed of; oh well, deep down they are still good kids they just need to continue to grow.

I will be on the long road back home tomorrow (12 hours) so I don't know when I will get to talk with you all again.  When I get back home, I will be getting my dogs on Sunday then our daughter will be going back to college on Monday & hopefully my dr sent a return to work for me for Monday so I can get my classroom ready.  I might not have access to a computer for a while so if you don't here from me, don't be alarmed; I will try to check in.

Take care and I hope that you all feel well and stay healthy and heal.

Love you,

Judy

YAY Hodaya, I see you are back to the land of the living. I am so happy for you...I can't wait to hear your story. How do you feel now? Can you go poop easier now??? How is it?

I am miserable. I took tons of miralax yesterday and today and I feel so awful because I can't get the poop out. I feel very nauseaus and sick to my stomach. My rectum feels closed up. I am so tired of this. I plan to reschedule my appointment with my colorectal doctor and see about getting the ileostomy. I had to cancel my appointment due to work.

I know this sounds crazy, but I am so tired of spending half of my life sitting on the toilet. I told my husband spending so much time in the bathroom is my part time job. It is a miserable way to live. He agrees 100%. But I am terrified of getting the surgery. No surgery is easy, but to change your plumbing is a huge deal. I don't want to live with a bag, but it seems like this is the only way I can get some relief.

What do you guys think?

And Lizzie if I was you, I would have the revision if it isn't too big of a deal. What do they do? It seems like I have read that many people have had to do this due to a retracted stoma. Even though you may be getting a reversal, maybe this will help you in the mean time. Have you googled retracted stomas to see what you can find? I really feel for you and this scares me about myself.   If we only knew what cured you of your anismus? Does your doctor think it could possibly be due to the long rest with the stoma? Because it is looking like I may not have a choice. I can see a blockage in my future due to my inability to get the poop out. The colonic inertia is pretty controlled with the miralax. It is the anismus or rectal nerve damage that is causing me the most problems. I take nexium, zegerid, and zofran daily to try and help me with the continuous nausea. I am SICK and TIRED of living like this. Sometimes it just feels unbearable.....

Tracy-

It sounds like your at peace with your decision. This will help, like Rosemary I had no choice or the blockage would have killed me eventually. There is still no medical explanation for why my rectum has relaxed. I am still fearful for the future and reversal possibility. I want it more than ever and truly my life with my ileo has not been the easiest. I have changed my bag 3 times today.....just now becuse the itching was so bad...when i took it off the stool had again broke down my skin and i was bleeding. I feel better, definately and it has given me back a sense of life. The life your living is awful and all too familiar. The rest may have been the key. My biofeedbak therapis said she cannot believe I am the same person. She was never able to perform the internal excercises and stretching because my rectum would not let her and it hurt so bad. My rectal tone was off the chart and now it is normal. I never could do what I am doing at therapy now. So......there is hope for people like us....why? I wish i knew so I could give you all a reason.

Call your doctor...do not get to the point i was....its not worth it. The surgery is not fun, but you are strong and will be ok.  Praying for you.

Lizzie

Hi Tinkerbell2,

Be careful to get ACCURATE info on whether you really have the sigmoidocele. My case is a nightmare.

I was mis-diagnosed as having a sigmoidocele by a resident radiologist whose teacher didn't check her work. Then I was subsequently told by 3 surgeons based on the radiology report that I needed my sigmoid colon removed.

What I did not know at the time (2006) was that all I had was an eneterocele (loop of SMALL intestine) that descended only at the end of the push phase of the defecogram only AFTER rectal contrast had been expelled. (In 2006 I ASSUMED the defecogram had been read correctly as I had it done at the leading GYN hospital of the northeast where they specialize in such issues.)

As I was told by 3 colorectal surgeons (all at major medical centers of the northeast) that I needed my sigmoid colon removed, I had it removed. The surgeons I went to also did a ton of unconsented procedures but that's all another story. WHere I had my sigmoid removed and the colon ends rejoined, narrowed in to only a 3 millimeter diameter. The colorectal surgeon had no plan to deal with it. I had to seek my own help for dilation of this narrowing.
Unknown to all of us was that my puborectalis muscle had also been scarred so, in essence, that surgery GAVE me anismus, which I did not have prior. In addition, severe scarring of my small intestine gave me on-going small bowel obstructions.

Took me 13 months of tests and treatment by 11 surgeons at 7 top medical centers across the US before the extent of my issue was diagnosed. The tricky part was finding a surgeon willing to do what had to be done to save my life as docs don't want to deal with eachother's screw-ups.

Thankfully, I found an older doc who was in medicine for the right reasons (to save lives) rather than play medical politics. Because scarring had permanently cost me the use of my colon and rectum, this surgeon lysed the adhesions off my small bowel, put in Seprafilm adhesion barrier, and made me the permanent ileostomy stoma. There IS the risk of reobstruction from new adhesions, but so far so good and it's been almost 2 years. However, I can tell I certainly must have adhesions at least more toward the surface as my abdomen is not real bendable anymore. But this doc says you can have tons of adhesions and if they're not in the wrong place you can be OK. So far he's right and without him I would have died. Am travelling a lot to enjoy the time I've been given. May stay OK, but in the back of my mind I do worry about adhesion reobstruction.

So my message to you (as one who has been there).......if you are even thinking of a sigmoid resection for a sigmoidocele, be sure it is really a sigmoidocele before you have your sigmoid removed.

My defecogram was done on an upright MRI machine (only one hospital in the US has this and the others are in Europe. I thought I was getting advanced technology, which I was, but the technology is only as good as the person reading the results.)

To be really accurate a defecogram needs to be done with barium (of if you can't tolerate that like I couldn't I have an allergy to that) then gastrograffin a water soluble contrast. You need the oral kind to make the small intestine appears on the defecogram. You need the enema of whichever to make the sigmoid show on the defecogram. (This would clarify is the problem sigmoidocele or enterocele). Then you need some sort of paste barium or gastrograffin mixed with instant oatmeal to show the physiology of the rectum to check for possible anismus or other rectal abnormalities.) Only in this way is the sigmoid colon, small bowel, and rectum able to be seen on the defecogram. So go for the most contrast that is offered.

My suggestion is to get mutliple defecograms done at multiple places, talk to multiple radiologists, BEFORE considering surgery and talking to surgeons. The surgeons only rely on the radiology reports. Let me know how you do. I don't mean to be telling you what to do, but when I saw the word sigmoidocele in your post, I felt obligated to share my hard-learned lessons with you. Good Luck, Rosemary

Hi Everyone! Sorry I havn't posted in a while. I have been reading just have not had time to post.

Hodaya- It is so good to hear from you!!!! I am so sorry about the infection, did they put you to sleep to reopen the incision? Take your time, but let us know as soon as you can how you are doing. We all love you on here!!!!

Judy - I hope you got to go back to work! I know you are ready! I hope the 12 hr trip was not too bad for you.

Lizzie - I'm sorry that stoma is giving you so much trouble. I pray these next few weeks will fly by for you, for all of us!

Jenise - I hate to hear that you are having to go through the defogram AGAIN. It was horrible enough the first time!! I will be thinking about you.

Tracey - I am so sorry to hear that you are not doing well either. I can understand your frustration at staying in the bathroom. You have to decide what is best for you and only you can do that. I am glad that your husband is so understanding and considerate. That is how my husband is also. He would have been fine if I had had to have a bag. If that is what gives us back our life then it is worth it!

Jen - Try not to lose too much weight before surgery. I was excited about that until I went 14 days without eating and had to have TPN through the picline. My muscles deteriorated rapidly. You will lose weight without trying in the hospital. I was so weak before the surgery that my recovery was really hard and I spent 16 Loooong and miserable days in the hospital and couldn't walk for days after getting home. Try to be as strong as you can when you go in the hospital. Okay?? We want you to have a great success story to share when you get out!!

Marissa - I am very worried about you. Let us know as soon as you can what the doctors find out. Are you losing weight or holding?


As for me, My lower abdomen is killing me all day today. It is swollen, looks like I am four or five months pregnant. I would be really worried, but I am not nauseated and I have had diarrhea two times today. So I don't think it is a blockage. Fortunately for me, I scheduled an appt. with my local G.I. doc last week for tomorrow. Isnt that great! It may be my ovaries, it is really low, so I don't know. Has this happened to any of you. I still cannot eat any starches or carbohydrates. My stomach will not process them and they say it is probably permanent because of how long the colon was inactive before it was removed (for many years). My frame of mind is absolutely wonderful!!! Until the ab pain last nite, I have been pretty much doing what I wanted and loving life again! I will post as soon as I can tomorrow and let you know what he thinks.
Christy
7 weeks post-op laproscopic total colectomy with ileorectal anastamosis!!!!!!!!! YEAH!! I made it!!!!! And you can too!!!!!

Hi Tinkerbell2,

Thanks for your reply. I'd lost track of who I've replied to and on what board. Sounds like your doctors are all on the up and up, especially with finding that the sitzmarkers lodge in the sigmoid. Sounds like you definitely have the sigmoidocele. Wish I'd had the docs you do. What part of the country are you from; am just curious? Thanks, Best Wishes, Rosemary

Hi Girls,

We made it home safely!  My husband said that I'm definetly feeling better because this is the first trip in 7 years that I didn't fall asleep at all on the way down or back; before I would be sleeping before the next state line and that's  only about 8 miles away.  

 I didn't get the new note from my dr to go to work tomorrow, so I need to call his office as soon as it opens to see if they will fax a note to my school; I really need to get my classroom done, I only have tomorrow & Tuesday.  The people that watched our dogs said they will help me so I'm going to take them up on it; they are 13yr old twins.  The boy was in my 1st grade class & we bonded because he has a shunt to remove water from the brain.  He had 26 surgeries by the time he came to my class and when he was in my class he was so sick he almost died twice; well I went to see him several times but especially the one time when they didn't think he was going to make it and he smiled and started to come around when I got there so his Mom is convinced that I'm his angel, well we have bonded from that time on and now he's 13.  It's so hard to believe he's growing up.  He never got sick again until this past year, we were both in the hospital at the same time but we always stay in touch.  It's that bond like we have all built with each other; we were meant to meet and help each other and we will always be here for each other!!!!!:):):)

Anyway, now that I've rambled, Hodaya-it's so good to hear from you sweetie!!!! Don't worry about the open wound, a lot of people (not on here, but others I know) have had to had wounds heal from the inside out; it takes time but it's the best way.  I'm just so glad that you are home and on the road to recovery.

Jen-As Christy said built up any muscle you can, the stronger you are the quicker you will heal.  I too lost a lot of muscle tone from having so many surgeries since May and being so sick, I even lost muscle tone in my forearms, it's gross!!!!!!!!!!!  So try to build muscle and maintain weight if at all possible, I know you don't feel good but you will feel better in the long run.

Marisa-Praying for you; hope you are feeling ok.  Know that we are here for you.

Christy-so glad that things are going well!!! Hope the ab pain is just a fluke and you are ok.

Lizzie-Hang in there girl; I know it's easy for me to say, I'm not the one with the skin irritation, but know that I'm always praying for you!

Jenise-You sound very comfortable with what your dr is doing and if you are then everything will be great!!! That's how I was and look how things worked for me:) Have faith and confidence and know we are here for you; love you:)

Janie-Hope you are doing well and bio is starting to work; how's the pup.  Our babies missed us terribly even though our sitters spoil them rotten:)

Hugs and love to all,

Judy

HI everyone,

Lizzie, I hope that they will be able to move up your date so hat you can have your reversal and stop struggling with your stoma. It sounds just terrible what you have been going through! I posted on your other post about that idiotic guy.. what a jerk!

Hodaya, hope you're home or will be heading home soon! We miss you here!

Judy, did you get your note so that you can return to class? I bet you're a great teacher, and it's no wonder your young student bonded with you! Sounds like he is doing fine now at age 13.. hope you and he both stay healthy and out of the hospitals!

Jen, sounds like you need to eat as best as you can now and lifting weights is a good idea. Build your strength up as much as possible. For myself, I have a little cushion of weight , so I'll be very happy to lose 10 lbs! Even 15 would be fine with me! I am working on losing 5 lbs before surgery, and I am exercising everyday for 45-60 minutes. I am waiting on getting papers from my doctor which will give me more info on things.. and I imagine instructions for a bowel prep...?

Tracy, were you able to make an appointment with your doctor again? Hope you're doing okay, but I know you are struggling everyday - that's not a good thing!

Christy, you sound great! I really love to hear success stories... even after a return emergency hospital stay! Keep getting healthy and strong!

Rosemary, yes - I feel confident that my doctor are correct in my case, but that said... last night I got to thinking as to WHY they didn't see the sigmoidocele during my 8 hour sacral colpopexy surgery and why didn't they see your eneterocele? It is possible that you had BOTH a sigmoidocele and a eneterocele... scary that sometimes they only fix one thing at a time, and reveal that there are other issues... With my case, my doctors have diagnosed with with colonic inertia as well, and plan to take the sigmoid and descending colon out - which hopefully will help with my years and years on constipation.. but might not because I still have a descended rectum... I am hopeful.

Marisa, hope you're feeling a bit better. I know today is the day you get your test results back - hopefully, they will have answers!

Hodaya I am so glad to hear from you. Hopefully you will get out of the hospital tomorrow. I think just being at home makes people feel better. Are you able to eat much at all and go to the bathroom easily?

I hope your pain goes away soon. I am anxious to hear how everything is going especially since I am having the exact same surgery in a little less than 2 months.

Feel better soon and you are in my prayers.
Jen

Hi everyone,

I posted a long note last night and lost it before I sent it; that makes me so mad! I got a new laptop for my birthday and I love it, but twice I've hit the wrong button and whosh, everything is gone!!

Lizzie,
I'm sorry about your crappy week. That guy sounds like a total jerk and I agree with everyone who said you should report him. He was totally out of line to talk to you like that. I"m sorry you had to hear that crap! I hope you can quickly forget all the nasty things he said, and realize he isn't worth listening to!

I'm going through biofeedback also...is your nurse talking to you about your diet alot? Mine seems to be fixated on my diet and not so much with my exercises. She drives me nuts; I only go once a week because it's just too far to drive to more than that, but I spent more than 1/2 the time talking to her. Finally last week my rest score got down to 5 and below, but when I push it goes way up. I can't relax and she's not helping! I wish there was another place I could go, but I can't find one anywhere near me. She just wants me to eat fiber, fiber, fiber. How much time do you spend hooked up to the machine and doing your exercises?

Hodaya,
Hope you're home soon...poor thing. I feel so fortunate that I didn't have to spend more than 8 days in the hospital; and I thought that was a long time! I'm anxious to hear your story....but at least hope the pooping is going well.

Judy,
I'm glad you had a good vacation, but don't try too hard to figure your kids out. One day, probably not too long from now, they'll turn back into the little girls you knew so well. We only have boys, but I've been through it...and now they're all grown, doing well, and we don't scratch our heads nearly as often as we did when they were in college!!

My pup is doing ok...she actually had a urinary tract infection and we just got her on antibiotics today. She went from 3.8 to 3.1 pounds since last Wednesday. Poor little thing. She's always biting and nipping...and the last couple days she hasn't been. I was bragging that she was being so good, but really she was just sick! She is such a sweetie though. She's just adorable. She's learned a bunch of tricks (Havanese are used as circus dogs and love to learn).

I'm doing ok.. still have some good days but more days when I'm uncomfortable. It seems like I'm either going 10+ more times a day, which is a good day, or trying to go 20+ times a day and just can't get much out...I can always get a little out, but sometimes such a little amount at a time and I constantly feel full and like I need to go more. My butt hurts from the pressure and I get miserable. If that happens, I drink prune juice or do an enema and I'm usually much better. The problem is that it's not always convenient to do that; prune juice gives me the runs and I can't take it at work. I can't do an enema at work, so if I eat something in the morning and don't go much, I don't dare eat any lunch or I get backed up. Then days like today, I went a little all day long every time I ate a little bit and never got backed up at all. I've actually felt pretty good. It's really not my diet; I can eat the same thing 2 days in a row and will have 2 different results. It's so hard to figure out and it's so discouraging. When I have the horrible rectal pain and pressure, I honestly think I'd rather have a bag...then I read the problems Lizzie is having and I figure as long as prune juice and enemas work, I should find a way to deal with it. I so wish biofeedback would work. I'm going to stick with it for awhile.

Hope everyone else is doing well.

Janie