TOTAL COLECTOMY PART 35 THREAD 14

Val sweetie, ARE YOU NUTS? Or just superwoman I can't imagine going back to work after 2 weeks....I stayed home 3 months!!! LOL Of course as you know, I kept my NG tube for 5 days!! Seriously, I had no problems, but it took me a couple months to figure out when and what to eat without either staying in the bathroom all day or staying up all night trying to go. Are you already pretty regulated in going? I truly wouldn't rush back too soon....I'd stay home at least a couple more weeks. It's such a big surgery and you really need to get your strength back. Hope you know I'm kidding about you being nuts:)

The swishing is normal I think. My doctor said because he took out 8 feet of colon, I had lots of empty space and things needed to "find a new home and settle". It really feels strange, huh? It will settle down though. I know at first I was even scared to eat much of anything because I was afraid of where it might go!! I know I sound like a nut about all this, but I'm not usually a nervous or worried person, but losing my colon just freaked me out a little!! BUT...I don't miss that big ole' thing one bit!!

Janie

Hey Val I had my total colectomy on October 26, 2009 and then three weeks later on November 17th I had emergency exploratory surgery due to infection. So needless to say I had a rough recovery. I was out of work for 5 months due to numerous problems with throwing my guts up and dehydration. My small intestine still occassional sloshing noises and sometimes I can even feel them making like a popping noise...real strange sensation.

I watch my diet pretty closely. When I eat things that don't digest well they literally come out the way they went in so I just avoid certain things. I still don't do well with pizza for some odd reason so I avoid it. Other than that things are pretty normal I guess. I feel so much better and despite all the complications I would do it again tomorrow. I feel so much better than I did pre-surgery.

Now I would not go back to work too early. I started trying to do housework and even walked some on the treadmill on my third week post-op. Now whether that had anything to do with the anastomosis site leaking I don't know, but I will always wonder. So take it easy for at least 6-8 weeks.

Jenise I am so sorry you are still having trouble going to the bathroom. I hope the Miralax and MOM work soon.

Janie I was the same with the NG tube. On the second day post-op from the second surgery he said he would take it out and see how I did. I said uh no if you even think that you might need to put it back in you better leave it in or be prepared to put my butt to sleep to put it back in. He kept it in another day and promised that he would sedate me if they had to put it back.

Praying for you all.
Jen

Val, pls take it easy girl, 2 weeks??? honey that's way too early... you said your self how worn out you were even working from home, so you want to go back already..?? i'd say take few more weeks, you are doing so well now, you don't want to risk anything, trust me! just rest and rest some more, and walk as much as you feel you can endure and just TAKE YOUR TIME, WON'T YA!! the swishing will settle, like Janie said, it takes time for your system to realize the major change it went through. anyway, i'm so happy you're doing good :) Jenise, i'm so sorry you're having such a hard time. not being able to go is my worse nightmare!!! hope it works it self out soon. Janie, LOL that is so funny about the NG tube :D not feeling so great today, i dared eating cabbage yesterday, so this morning i'm having that pain again, same pain that means a possible blockage is on the way.... and i'm SO scared of getting one... the pain is still kinda dull, but it's there and it's worrying me. i guess i'll have to put myself on clears today, if i want to stay away from the hosp!

butterfly~wound vacs are worth it though!! I didn't mind mine but didn't really leave the house...mine was hooked to my rear...try explaining that to the neighbors:)

I bet you sleep with your mouth open? Is your mouth dry when you wake up? I had to retrain myself to keep my mouth closed and it makes a world of difference!! Keeping your tongue on the roof of your mouth makes it easier to keep it closed.

Lori, so good to hear from you! so sorry about the wound and that vaccuum (not sure what that means, but it doesn't sound so great), i hope you're free of that soon. where is the big incision located? is it still painful? but do you feel a relief now with the regular stoma, compared to the leg bag? do you feel a significant difference in general? it sounds like you're doing better now and it's so good to hear :) the pain i had yesterday went away and there was no blockage after all, THANK G-D! so scared of more blockages, those blockages are a nightmare. i had 3 within 10 days post op, but havn't had any since July 19th, so i guess it was a reaction from the surgery..? not sure, but my surgeon did think that it does indicate something about my system being slow/dysfunctional. oh well, but at least it's over for now. i know FOR A FACT that if i quit the pear juice, i'll start getting those blockages again every so often. but i thank g-d for helping me find this natural and simple solution.... it's really amazint that that's all i need now to feel good, isn't it? my surgoen wanted to do a ct if the blockages keep coming, but since im feeling good and eating with no problems etc, he let it go for now. i wasn't sure if maybe i should have insisted to have that ct.. should i? anyway, since last night i'm starting to feel a lot of uncomfortable pressure in my lower abd. it's been 4 weeks since the ileo op and i believe i have some mucus there and maybe also some stools and it's SO uncomfortable. i know i can't expel it on my own (i don't even feel it has reached the rectum yet), so i don't know how and what to do..?? it really feels aweful. i got additional 2 weeks, meaning till Aug 22, but i don't feel it's enough, i need at least till the end of the month, i really need time to adjust, phisically and emotionally, i just don't feel ready and i also want to work only part time for a while, not sure how this will work out for me. ever since my colectomy my boss is being really rude to me, he has said some pretty rough things to me, paying me low salary, not cooporative and basically just being really mean to me, so i don't mind leaving b/c of med condition and receiving full compensation for the 8 years i've been working there. after the way my boss treated me in the past year, i really don't want to work there anymore. i just don't need this additional stress. it is hard to think i now have to find a new place of work, but i also really don't want to work in my current work any more :( i think i'm gonna ask to talk with a social worker and see how she can help me with my whole situation - my recovery and adjusting and also with the employment aspect. i need someone to talk to, cause i feel so lost :( i don't mind the air as long as it comes out only during the night and not during the day lol... it has to come out daily anyway, so i guess it better be at night lol.. ;) i'm so glad you're recovering well, so happy for you dear!! i have to watch my weight too, my system is really slow and i gain weight very easily. but i don't have much appetite anyway, so i'm stable at 114 lbs. try not to eat after 5-6 pm, not eating after these hours makes a huge difference. at least that's how it is for me. LOL OHIO.... you're funny :D

My desktop is down (maybe a cable connector) so I will post in installments until it's fixed, This netbook has a tendency to eat messages in progress of being written.

Janie - Yes, I'm NUTS!! LOL Yesterday hubby drove me to work topick up some materials and clear out my inbox. We were there maybe an hour plus 1/2 hour commute each way. I left home feeling froggy but came home a tadpole. Hubby is waiting for me to see the surgeon tomorrow. I think he is going to tattle on me.

Ohio - That's quite a visual image you left me. hehehe

cookie74, I would love to know the answer to your biofeedback question as well. Now, I have had some sort of biofeedback. But it was more of an, I guess, Holistic biofeedback. It involved me lying flat on my back and the physical therapist doing alot of stomach manipulations. Then I did a few perlvic floor exercises. I went for several weeks twice a week. And it didn't work. At all. Not even a little.

The biofeedback I have read about online sounds almost like a manometry. Inserting a tube into your rectum to test your pressure? Something like that.

I don't know why but my surgeons seems to be doing things that have LOW success rates when I do my research. Like rectal botox and especially dilation. My surgeon set me up for dilation. I came home and of course did Google research. I was shocked when I found out about the very low success rate of it. In fact most doctors won't even do it anymore. There's something called a Sphincterectomy that's being done now. I would like to try that. But I'm not sure if J Pouch patients would qualify for it.

cookie, biofeedback is actually a theraphy to teach you how to use your anal muscles. i had 10 sessions before my colectomy, but it didn't help me. hang in there, i know you need lots of patience and strength to go through the routine we all been through, tests, laxatives and biofeedback. it all takes time, while we're still in so much pain and limited in our daily lives. i hope your drs don't prolong things for too long for you. Val, lol, well actually my colectomy was a year ago, so basically my smalls have already adjusted and i can pretty much eat more foods than someone like you who just had a colectomy. but anyway, it's still too risky for me to eat stuff like cabbage, lettus, or any fresh fruit or vegie. but in very very small amounts it's o.k for me. last night it was sooooo good i just couldn't stop and ended up eating a large bowl, i just have to watch the quatity. so you're not going to Laughlin, right..?? lol i'm not sure about you, cuz it seems you can't sit still to relax and rest.. take care of your self and BE CAREFUL to not over do it, k? snuggle, your experience with biofeedback actually sounds promising, you'll be the first one i hear biofeedback helped her and if so, i couldn't be happier for you :) good luck! i'm still feeling that pressure in my lower abd. the intesity varies and it comes and goes, tolerable so far, but if it gets too intense, then i'll have to ask for help. i guess having the mucus sucked every 1-2 months will be the thing to do, like Rosemary. BTW... where are you Rosemary???? aren't you supposed to be cack from your cruise?? i'm worried, hope you're well.

I have not posted in a very long time.  I read the posts from time to time and always learn so much.

I am a sucess story.  I had my total colectomy 5/2009 for colonic inertia and mega colon..  I was in the hospital for 24 days with many complications.  I went into atrial fib, lived through a blood clot in my heart, blood infection, abdominal abcess, and malnutrition.  I came home in diapers and using a walker. I had home health for 2 wks with TPN.  I went back to work 9 wks later.  I started out with 15-20 trips to the pot a day.  Now my small bowel have figured out how to work like a big bowel.  I use the pot 3-5 times a day, eat most foods.  I stay away from lettuce, fresh fruit and vegetables and nuts.  I still have bouts of diarrhea, have terrible gas, a very sore bottom at times and fight fatigue but all in all life is good.  I am no longer in pain.

I thank the lord for the wonderful medical care I had and my wonderful husband and friends.  I am amazed at how the body heals.  It was a good 14 months before I really felt like myself although I hadn't felt like myself in a very long time.

Hi Ladies,

 

Lizzie is back at home! She is not on TPN or IV pain meds anymore, and her surgery has been postponed until September 3rd. Her surgeon needs her to be off the pain meds for four weeks so that her body will respond to the pain meds after surgery. She was feeling pretty good on Wednesday, and was really enjoying being at home with her family, and spending time outside in the fresh air. Thursday was not a good day. She was not properly weaned off TPN and pain meds, so she is going through withdrawal symptoms. She has an appointment this morning with a specialist for medication to counteract the symptoms. Pray, pray, pray that medication gives her complete relief, and that it does so QUICKLY!  Pray that her pain would be tolerable, and that these next few weeks at home would allow her to rest, heal, and just enjoy being outside the walls of a hospital.

 

Snuggle - They are not doing electrical stimulation on me. The PT does a little (very little) manual vaginal work, but mostly it's just watching the screen. It is extremely painful. I saw the pelvic floor physician on Wednesday, and she couldn't even do the vaginal and rectal exams because I'm so tight. The second they touch me, I end up backing off the table because it hurts so much; most likely, they will never be able to use any of the internal probes. They want me to complete a solid six months of biofeedback, but there is no way I am willing to do that. It has already been a month and a half; my numbers have not improved, the spasms are worse, and it is harder to have a BM. It's not worth the pain, and based on how I feel, and what I know about biofeedback, I don't think this is going to work...no matter how long they drag it out.

 

I met with my surgeon on Tuesday, and he agreed with trying biofeedback, but he doesn't place much stock in it at all. He didn't even have me try it before he did my total colectomy because the success rate for constipation patients is so low. He wants to do a defecography and possibly Botox. He also wants me to see a colleague of his who takes a homeopathic approach to constipation because it may help, and if it doesn't, it won't hurt. After I see him, my surgeon wants to see me back. "See you soon," is what he said...music to my ears. I can't believe I waited so long to go see him again! Before I found HW, I thought that a total colectomy was it, that there wasn't anything else that could be done for persisting problems. I thought that because that's what my mom said, and she has been a nurse for almost 40 years, so I believed her. Now I know that's not true! If you don't feel well, keep going back because there is always more that can be done. I don't care if I end up needing an ileostomy...maybe then I'll be able to get back on a horse :)

 

Paging Miss Sarah...how are you feeling???

 

Gilda - Praying for you as you make this difficult decision! Keep fighting for the life you want and deserve!

 

Val - Wow! SO impressed!! Praying things continue to go so well for you!

 

Hodaya - Sounds like it might be time for a new job...you deserve so much more than that! I hope you can get all the time off that you need to recover and heal physically and emotionally. My only concern with having an ileo done eventually is diet. I cannot eat low fiber/low residue. I will never have a BM if I do! I eat tons of fruits (no apples, oranges, pears, or berries, but most others- canned and raw- are ok), and cooked veggies. If for some reason I had to permanently eat low residue with an ileo, I think motility would stop altogether. Do I have any reason to worry about that? Are you able to eat fruits and vegetables? Anyone with an opinion/thoughts on the subject, please chime in!

 

cookie - Biofeedback is a type of physical therapy that is used to relax the pelvic floor muscles and allow the rectum to empty. There are probes (vaginal and rectal) that measure the tone of the muscles of the pelvic floor, but they can't use those on me because I am so tight. There are external perianal sensors (that's what they use on me) that can be placed that will also measure the tone of the muscles. There are different exercises that are done to try to help the muscles to relax, and you watch a graph go up and down as you try to do the exercises. Your surgeon is right- mine felt the same way. Biofeedback does not have a very good success rate for constipation patients. It is more useful for patients with incontinence because it is much easier to strengthen those muscles than it is to teach them to relax. My PT wants me to be able to push a balloon out of my rectum, but I honestly don't see that happening!

 

Happy Friday to you all! Much love and many prayers!

 

Allie

Allie - sorry it is so bad. My PT is only doing rectal stimulation and then I have the machine stimulation. The manual is HORRIBLE and I'm in a lot of pain but my PT is good about not pushing it too much. I wonder if a heating pad would help? Or sex? :)

always good confirmation when you know it isn't all in your head :)

cookie, the pressure comes and goes, just like when you're constipated and it there close to the pelvic but won't make progress, so after it's stuck for so long, you start loosing the sensation. i wish my surgeon did me an end loop, where they actually cut the small intestine completely, so that way, no stools can reach the part that's benieth the stoma area (including the rectum of course). with the regular loop, the stools can bypass the stoma and move on the the rest of the smalls and then the rectum. i'm so upset to know there's stools in my rectum, cuz there's no way i can get rid of it on my own.. just don't know what to do about it yet :( i've never heard of that theraphy you mentioned. i hope it's something good, keep us updated about that. your M.E suggestion about the loop ileo sounds similar to what Tracy had done, but she did have some portion of her colon removed, i think it was the sigmoid only. i think that in any case, removing the whole colon is the best way to go, i mean what's the point of leaving it in? but maybe there are things i don't know about , and they know better, right? i just hope whatever you do is best for you!! keep us posted. Val, i've never asked my surgeon about the pathology, and he never said anything about it either.. i wonder why..? maybe there was nothing abnormal in my case? well i'm glad your appt went well. so when are you getting back to work?