TOTAL COLECTOMY PART 35 THREAD 13

Hi Girls,

Had a super long post written the other night and lost it when I clicked on submit.  Am only going to write to a couple of people as I went to bed at 1:30 am this morning bc I was finishing report cards and I got up at 4:30 am so I'm very tired.  Please say a pray for me for tomorrow as my union case goes before arbitration tomorrow at 10:00; they figure the case will last all day and hopefully it will settle in my favor:)

Good news to hear from Tracy this soon: hope she continues to do well.  We have been praying and praying for you.

Barb- wrote you a very long post to encourage you but as I said it was lost.  I am and continue to be one of the success stories on here!:)  I continue to post so that I may encourage others as well as offer words of comfort to those who are in need.  It will be 2 yrs on July 17th since my surgery.  I had a subtotal & have about 2 in of my colon left.  My surgery was open due to all of my previous surgeries (you can see them inmy signature).  I too tried every prescription med in massive doses to try to have bms and normally only went about 1-2 times a month small pellet like bms.  For my surgery, I wasn't cleaned out, have NEVER, EVER been (once had a prep that stayed in my system for 10 days) but my dr didn't worry as he told me he clamps off both ends & I took 6000mg of antibiotics the night before my surgery. I came out of surgery with an NG tube for 1 day, an epidural for pain (the best things EVER!!!!!!), 2 drains, IVs, catheter, oxogyn and pain meds given into my IV.  The 2nd day my dr gave me the choice of either an enema or MOM to get things moving; I chose the MOM & within a few hours it worked, by that evening I was on soft foods & having several bms & started solid foods the 3rd day.  By the 5th day I went home & was having about 20 bms a day.  By 6 wks I went back to work full-time and was having 8-10 bms a day.  Yes, I was still extremely tired but I needed to go back to work.  This is a MAJOR surgery and it takes the body almost a good year to really heal and feel good.  But it's definitely the absolute BEST thing I have ever done and I have never felt or looked better!!!!!!!!

The best piece of advice I can give you is to FOLLOW the low residue diet!!!!!!!  I still do to this day!!!!!!! And hire someone to clean your house for awhile; DON'T do ANY cleaning, laundry, shopping, cooking, etc for 6 or more weeks; this will help your body to heal and help you to have a successful outcome to your surgery.

I wish you the very best and have been praying for you and will especially be praying for you tomorrow.

Peace, healing and prayers,

Judy

Barb- best wishes.

Christine - follow your heart. When I had my original surgery in 2006 that lead to all the complications, I was all caught up in analysis paralysis. I did not drop down out of my head and listen to my heart. If I had I would not have had that surgery and been spared all I've gone through leading to the ileostomy. My mind was in too much of a whirl. I didn't sit and listen to my inner voice.

I do not think you will have any issues and will do fine with your surgery as our situations are sooooo much different! ANd that prednisone is doing bad things to your sugar, But take some quiet time tomorrow and just sit in a park or some place nice and NOT think about surgery or not. Just feel sun on your back, the breeze, listen to birds chirping, just let your decision come to you rather than you chasing it. If the only qualm you are now having about your surgery is the lack of communication, then just call your doc or the hospital and ask what's up? Ask at your appointment. Tell then how you feel. They should be able to address your concerns. This may ease your mind.

Rosemary

Hi Judy!
Oh thank you so much for taking the time (again) to write to me. And thank you for sharing your story!
This is so much information, and I am so thankful. I feel like I will do better, if I know how it is going to be (even the bad stuff) before it comes. I dont want to be surprized. So, again thank you for all the good and the bad.
I have 2 roommates right now, so I will have them do all the cleaning. I will have to force myself not to, ha ha, because it seems like I am the only one that does things around here sometimes - lol. But hopefully, they will pick it up while Im down.
So, my preliminary plan, is approx 1 week at hospital, 1 week at my parents (ill get my old room back) and then go home, and my friend Kelly from Canada will be out for 1 week. So the first 3 weeks I will have people taking care of me which is really nice. I, too, would love to get back to work asap, but I have been approved (thus far) up to 8 weeks. I am hoping to get back around the 6 week mark. At that point you said you were going 8-10 times a day? How many times to you go now, that it has regulated better? I hear 3-5 x's and that would be a God-sent! OMGoodness!!! Truley it would feel like a miracle.

(Oh, I will be having a total colectomy, 18-20cm of rectum directly connected to small intestines).

Also, I would love to get back to exercising regularly - of course - when I can....Would that happen around the 2 month - 6 month - more mark? And...if I am able to lose some weight from the surgery, I would want to keep it off. I am 157.5 lbs as of last Friday and I am 5'5", so a good 20 lbs would be amazing. **Just crossing my fingers that I will get a 2-fer!! LOL. Really, if I dont have to be constipated and feel horrible all the time, Id keep the weight.

I need to look up the low residue diet and see what it is all about. I have meant to and havent but I will once I submit this post. :)

What did you do while in recovery not to get bored?? I have always been a person who likes to do something all the time? I am afraid I will get bored and push myself when I shouldnt. Do you (and anyone else) have suggestions of things to keep me busy without over doing it?

Thank you again!!! I really appreciate it!
Looking forward to tomorrow. I only want to think positive thoughts. :)

Barbara Bee

Barb - I'm in California too - central valley. It's good to know that we are in the same time zone. Do you know if you will have internet access while you are in the hospital? Just want to be able to keep up with your progress.

Judy - Glad your case is finally being heard. Hope things go well for you . . . Please keep us updated.

Judy,

good luck on your case!! Be sure to let us know how things go. Don't you hate typing those long posts just to lose them?? I'm so glad you've had such good luck with your colectomy, you've had enough other issues so you certainly deserve a break somewhere!!

Barbara, good luck on your surgery. I also had a total colectomy in March 09 and I'm so much better than I was before. I still have issues because of pelvic floor problems, but between miralax and prune juice, I go quite a bit. At first I was going 20+ times a day but that slowed down after 3 months. I don't mind taking mirlax as long as it works. I go many times a day, but it's still better than never going!!

I lost about 12 pounds, but in the past 6 months I've gained about 6 or 7 back. I loved having the weight off, but you're right.....just being able to poop is more important to me than a few extra pounds!! LOL

Hodaya,
Did you get your surgery date changed? Be sure to let us know how you're doing.

Tracy,
Good to hear from you, sounds like you're doing well. You really do feel so much better when you get home though!

Has anyone heard from Lori? I'm getting really worried! And how is Lizzie? Any more updates??

Rosemary,
So glad you weren't hurt in the accident. A friend of mine hit a deer while driving a truck and the police told him if he'd been in a car he'd probably have been killed. So glad you're ok!!

Janie

Good Luck Barb. Rosemary

PS Thanks Janie, yeah I heard those deer are more dangerous to hit. Yikes.

Tracy, SO good to hear from you! the stoma is working, so that's great, tho i hope the vomiting is not an ileus. OF COURSE it's all just temporary, you'll make it through and will be just fine, update us when you can. all the best to you, girl!! Jen, my problem is if i don't take anything to go, i just won't go, i'm VERY constipated and can't have spontenious bms. but when i take something to go, then i'm just bound to the b/r for too many hrs + incontinence, little bits each time..... and i have to work on it really hard to make my self to just feel the urge, so i sit, bend, stand in certain positions to make it happen...... gosh, i'm exhausted!! it takes way too much of my time and even when i'm finished, im not completely empty and still feel uncomfortable. the main/maybe the only reason for all of these problems is my rectum, i guess it will never work right again and is blocking the stools. i'm sick of spending my life in the b/r, 17 yrs of doing it is enough for me!!!!! i chose to have the ileostomy, i KNOW that that's the only thing that will free me from being a slave to my bowels for the rest of my life, it takes much less time dealing with the bag than with the devided tiny bms, and besides, the bag will, of course, bypass the blockage the rectum is causing, so things will flow much much better. yeah, i thought about it A LOT before deciding on this. at first i was devestated, but you gradually adjust. don't worry, if you're stable now and things are working, i truly believe there shouldn't be a problem. i started to have problems like 2 mons post op and it kept getting worse and worse, till i started to get bad obstuctions with horrible pain - the x rays showed the obstruction was just above the rectum!! the rectum is my main problem, i just hope it's not also my smalls and that it's only the rectum. i had another defecogram - emptying was good, just a 2 cm rectocele, but a significant anismus. also had a scope done - the anastomosis looks perfect. but symptomatically i'm having a very hard time. if you had a problem, it would have shown up by now, so pls don't worry, you're doing great and if things have been going good for you up untill now, chances it will change are VERY VERY LOW! thanks so much for your prayers dear!! Barb, best of luck to you!!! keep us posted when you can. Janie, they havn't called me back about the date yet, but it's the 6th or 8th. i'm worried about Lori too, there hasn't been a word from her in such a long time. i really hope she's o.k.

Hi Ladies,

 

They are still waiting for Lizzie's output to start up again. They did another NG tube really, really early this morning. Keep praying...she is in a lot of pain. Her surgeon said that once things wake up he is going to have her work with a GI rehab team to figure out the best strategies for when she is able to go home. For now, though...still waiting. Pray, pray, pray!!!

 

Allie

Sorry to hear you can't drink.

The green fluids are probably just bile and your fluids.. though I'm not an expert.

What hospital are you at?

Tracy.... so happy you're still able to update us!! the nausea is normal and it'll take time to go away, hang in there. it's good that your stoma is working. what do you mean a drainage pouch? what is it that is being drained and where from? the rectum? so sorry to hear you're dehydrated, i hope you overcome that soon! keeping you in my prayers honey. keep updatig us when you can. Allie, thanks again so much for the update on Lizzie. it's sounds so crazy, at one point she has too much output and on the other she has non...... what's up with that??? and why the ng tube?? is it for feeding or draining?? poor thing, i hope she pulls through very soon, pls send her my love, praying! Rosemary, i don't have Lori's tel number or any other way to contact her. Janie had her number, but now she cant find it. i think the only one on here who has a way to contact her is Lizzie. thanks, i really hope my small intestine is working good. we don't have the small bowel transit test in israel, but we do have something called small bowel passage, in which they do an x ray with contrast and see if the anatomy is normal - no narrowing throughout the intestine etc. i guess i will do the surgery first and if there will be any problems, then i will ask for this x ray.

Lizzie's output has been stopping when they have her take even a small dose of meds to slow down the dumping. Her surgeon has decided that there will be no more meds to slow down any dumping because her output stops, and the pain and distention get so much worse. The NG is in to relieve the distention.

 

Tracy- So glad you're able to update us! Praying for a flawless and quick recovery for you!

 

Hodaya- Have you had that xray with contrast done on your small bowel? Did they see any dilated loops?

 

Sarah- I am so sorry this continues for you. Have you seen any improvement with the antibiotics? Are you back at home, or still in the hospital? Please keep me posted on any scans to look for a tumor...have they ever biopsied your thyroid? I know it's hard- with motility problems, there isn't much that shows up on testing, so we need doctors that will take us at our word. You have lots of support from everyone on this forum, and I don't think anyone here is going to let you give up! You have my e-mail address- let me know if I can do anything to help. Just wondering...have you ever had biofeedback? I just had my first appointment on Monday, and my entire pelvic floor is in full spasm. The therapist actually said that it would be impossible for it to get any tighter. I guess we'll see what happens.

 

Love and prayers to all!

 

Allie

Allie, no i didn't have that x ray and i hope everything goes well after the surgery and i won't even need it, well at least i don't think it's too much to ask for the stoma to work.... that's my last resort, it'd better work (just so worried, cause i'm so used to things not working for me)

Just checkin in with everyone. I am leaving town for a few days and wanted to see how everyone was doing.

Tracy, hope you are getting better with each day!

Hodaya, good luck with your upcoming surgery. I hope your family is supportive. I know you have thought long and hard about this and I know you are making the right desicion.

Always praying for Lizzie. She just has to get a break already!

Barb, good luck on your upcoming surgery. And about being bored, I dont think you need to worry about that cuz you will be sleeping a lot and the nurses really try to get you up and walking everyday. And after that your so exhausted that you just want to sleep. Glad to hear you will have support and help. Accept all and everything that is offered to you. It is so important to rest and do absolutly nothing so your body can heal. I went camping 4 weeks after my surgery and ended back in the hospital. And as I look back that was not the best idea!!

love you all and will check in when I get home.