HealingWell
Search Close Search
☰

TOTAL COLECTOMY PART 35 THREAD 14

Support Forums
>
Ostomies
✚ New Topic locked
1 2 3 45 6 7 8 9 10 11
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/12/2010 6:08 PM (GMT 0)
Rosemary, ewwww. I have yet to pass any mucous...I have had some abdominal cramping, but it is short lived. HMMMM, makes me wonder if my rectum is still the same and NOT working. It still feels the same, like I can't push down. BUT, it is still sore and even pushing down onto the rectum to bathe or wipe sends severe cramping into my abdomen. What is up with that? My stomach is still swollen, especially the skin over the surgical cut....it is a roll of skin and me and my husband are hoping it goes down because it looks gross.

I forgot to tell you this too....yesterday when me and my husband were changing my bag, some clear fluid was leaking from my stoma....isn't that so weird? We both assumed it was mucous coming out of the 2nd hole. YUCK

And after the change, my stoma didn't produce anything for 2 hours...freaked me out because I thought we clogged the hole up or something....but it started producing and all seems fine.

The other night, I ate a small serving of potato salad....WOW, I freaked out when hours later, the relish started coming out....I didn't think I should be eating relish, but I thought since it was so fine, that it would be okay. It seems like my transit is several hours....meaning I ate the potato salad and I didn't notice the relish until several hours later....is this normal? And do you think I could eat potato salad if I blended up the relish? I just want to eat some food....I am extra hungry since I have this ileostomy. I am going to have to be careful not to get fat. :) So far, my weight is still down 5 pounds....

When are you leaving and when will you be back? I forget! Tracy
Posted 7/12/2010 8:22 PM (GMT 0)
Tracy,

Nice chatting with you. mouth to bag is about 3 hours for me. Your clear stuff could have been mucous from the other hole in the loop ileostomy. Watch that relish. It takes me a long time to get hungry, but wow then it hits. Dinner time. Eggs, croissant, and chicken soup. Then pack, walk. Grape juice if it doesn't hurry up and pass then bedtime early. WIsh me luck. I'll be in touch from ship. Rosemary

PS I think it's too early for you to even guess if your rectum will work or not. BUT what was found in my case is that my levator ani muscle was scarred that is why I can't push down either. once you can't push down, the rectum isn't worth much. Just my opinion and my experience. Originally I could push and pull everything, but not since the disaster surgery. Even hard getting mucous out.

I can't figure out why you've had no colon mucous, but as you have colonic inertia maybe it's not moving the colon mucous along either. Just my guess. Mine moves it along, just can't get it out due to the outlet obstruction that was created. RJ
Posted 7/13/2010 12:42 PM (GMT 0)
Tracy, you have so much to learn.. I'm sure it takes awhile! My husband has had some upper GI problems, but 2 years ago they didn't find much with an upper GI and ultrasound. For the most part, he is fine, but a few months back he had a tooth infection and they put him on antibiotics and he developed C-diffcile! he didn't know it... and let it go until it was pretty bad. They did get it controlled, but a month later he complained his stomach hurt and he felt sick.. but he is not a complainer, and I didn't know how sick he was feeling. He came home one afternoon from work and went to sleep - something he never does. We had a weekend trip planned and he needed to get things ready, so I woke him woke, but felt he had a fever.. took his temperature.. it was 104.7! He got into the doctors immediately, they sent him for blood work and all his liver functions were off. They made him go to the hospital, and they ran some tests.. but still couldn't really say if it was gallstones, pancreas or Hepatitis! They admitted him and the next day they put in a billary stent to help drain his ducts. They didn't find a stone, but fund "gravel" , but said the stone could have passed.. but anyway, the stent isn't suppose to stay in there, so it needs to be removed - and that will be Friday! Think your signature is good.. helps us and others know everything!
Posted 7/13/2010 5:29 PM (GMT 0)
hey, i'm doing much better, still in the hosp, ileus is over, pain is almost gone, i've stsrted clear liquids today and it seems to go wwell, so tomorrow they'll give me a bit more, stoma's doing it's job, so i believe within1-2 days im outta here YEAH!! it was so funny this morning, at 6 am it was so quiet, silent, then i totally jumped from my stoma who decided to be noisy with such funny noises, it was hellerious lol anyway i'm feeling great and can't wait to be out of here.
Posted 7/13/2010 6:15 PM (GMT 0)
Woohoo Hodaya! Glad things are starting to work and you're on the mend!!
Posted 7/13/2010 6:18 PM (GMT 0)
Hodaya....so glad to hear that you are doing much better. Too funny about the stoma noises. I bet it sounded really weird.
Posted 7/13/2010 6:22 PM (GMT 0)
Hodaya, that is hilarious. The noises it makes is crazy...mine farts and gurgles.....how much is yours putting out everyday? Mine was a bit too much yesterday so I took immodium at 3am because it would not STOP and I did not want to get dehydrated. I am shocked at how much poop my body makes....WOW, no wonder I was so miserable before surgery. I was FULL of poop.

So glad you are feeling better. Tracy
Posted 7/13/2010 6:37 PM (GMT 0)
YAY Hodaya!!!!! So happy to hear you are feeling better! smilewinkgrin   Have been praying for healing and will continue to pray for healing and a successful surgery.  Love and hugs my friend:)

Jenise- Praying that all goes well with your husband's surgery.  C-diff is nasty stuff - that's how most of my kidney issues started due to dr overmedicating me & me getting c-diff. then many problem followed.  Have been praying for you to have a successful surgery with quick healing.  Wishing you both the very best:)

Have been talking with Lizzie and things are not good; she is extremely bloated & surgeon feels it's due to pain meds so had them stop the meds.  She's in horrible pain and just wants to go home.  Mom is trying to connect with top surgeon in Michigan to get her out of there and back home.  Please keep praying she needs us sooooo much!!!!!

Going to hang out in the sun for awhile; hope all is well with everyone, I continue to have you all in my thoughts and prayers.

Peace and prayers my friends,

Judy

 

Posted 7/13/2010 7:03 PM (GMT 0)
thanks all. Tracy, it was too funny i jumped, cuz i didn't know were the noise was coming from till i realized it's my stoma lol. my out put changs, like yest it was 1600 ml, the day before that it was 1000, and today i think less than 1000, but i still havn't started eating yet, only today started liquids. anyway, it's just so cool not having to go, that it's not my responsibility anymore to empty :) the stoma is doing th job for me. judy, it is so sad about Lizzie, always in my prayrs.
Posted 7/13/2010 8:47 PM (GMT 0)
Hodaya, mine was around 2000 yesterday, and I still had a few more hours left in my 24...So, that is why I had to take immodium...but, I only need a half a pill and it slows WAYYYYY up, then produces thick sludge....yuck, this is hard to empty....liquid is definitely easier to empty...BUT, atleast I don't have to worry about dehydrating with the thicker sludge. I will be so glad when my body adjusts on its own and I don't have to take immodium.....

How are you sleeping? Because I can't sleep and it is driving me crazy. I have been told the insomnia is from me quitting smoking...I assume you haven't been smoking either, so just curious if you are sleeping. I have times when I want to speed to the store and buy some cigarettes, but I fight through it because I really want to be a nonsmoker....
Posted 7/13/2010 8:59 PM (GMT 0)
Oh gosh Judy.. that's scary! I think he needs to be careful.. all the infections and medications do wreck things up. Enjoy that sun!

Tracy, Since I have had so many surgeries this past 18 months.. I can tell you - I get terrible insomnia! Not sure if it has something to do with the anesthesia or pain medications.. but it took like 2-3 months for me to start a normal pattern of sleep. My hubby actually sleeps in the guest bedroom - because I can often wake up and can't fall back to sleep - and watch TV - and it disturbs him. DON'T start smoking.. no sleep is much less harmful! (proud of you for quitting!!)
Posted 7/13/2010 11:00 PM (GMT 0)
Hodaya! I'm really glad that you are feeling better today. Doing the happy dance here!

Jenise - Just this afternoon I called to make the appointment for my pre-op. Of course, nobody answered the phone so I left a message. Don't you hate it when you have your calendar out and are mentally prepared to make an appointment just to get voice mail? So sorry about your hubby's health problems, bless his heart. Will the procedure require an overnight stay or is it outpatient?

Tracy - Congratulations on quitting smoking. How are you handing it other than insomnia? Glad that you are getting used to your stoma but had to giggle about it scaring you.

Keeping Lizzie in prayer and appreciate the updates.

Val
Posted 7/14/2010 2:45 AM (GMT 0)
Tracy, i sleep just fine, always have, no mtter what situation i am in. after the colectomy i didn't smoke for 6 weeks, it never disturbed my sleeping. i havn't smoked yet, but i'm still at the hosp, hmmmmmm...... maybe i should stay here so i don't go back to smocking ever. i wish we both quit smoking foever.
Posted 7/14/2010 9:08 PM (GMT 0)
Hodaya, this not smoking business is TERRIBLE....I want to smoke so bad, but I am not giving in to the nicotine demon....LOL I hope I can stay strong, but wow, this is harder than I thought it would be 23 days out. A couple of friends even told me to go to youtube and watch, thanks tobacco, you killed my mom....OMG, I was absolutely HYSTERICAL...I cried and cried....it was just terrible, BUT, I still want to smoke. Nonsmokers have no idea how addicting cigarettes are....:( I hope we can both stay strong and not smoke, but I am wondering how long these cravings last?????

Did you ask your doctor about why he did the loop ileostomy?
Posted 7/14/2010 11:17 PM (GMT 0)
I haven't been posting lately but I have been reading the posts trying to keep up with what's going on with everyone.  I am so happy for you Hodaya.  I hope you can finally feel good and everything works great.  I am really worried about Lizzie.  I have texted with her some and am keeping her in my prayers. 

I really hate that so many of you are having problems.  I feel so bad for you guys.

There is hope.  Despite all my complications after surgery I have been doing very well and the small intestine is working.  I do have slow transit because basically if I eat something like lettuce or something else that doesn't digest I will see it about 10 hours later.  I still have several bowel movements a day though so I guess it is just everything I eat cycling through in intervals.  Who knows but I feel good and despite the 5 months of hell that I went through following surgery I would do it again in a heartbeat.

Only issue I have now is recurring UTI's but I guess that has nothing to do with the surgery.

Praying for everyone.

Jen 

Posted 7/14/2010 11:44 PM (GMT 0)
Hodaya,

Great news; glad your ileus ended.  You and Tracy can compare notes.

Re: Lizzie.  WHY WILL CC JUST NOT DO THE ILEOSTOMY NOW?  ANd get her out of this mess.  How much longer can she go on like this?  And now without pain pills?  What is their point of waiting to do the surgery that could save her life?  I don't mean to be so direct, but I'm in the  Atlantic and I guess feel that I can be more direct from out here.  Silly huh?  As we are all in Cyberspace anyway.  Or do they feel she needs to gain strength?  How can she?  I'm confused as to why they are not taking action as she is clearly in desperate shape.  Continuing to pray for her as well as all of you and me.

We're out of the heat but socked in with fog off the coast of Maine enroute to Halifax.

Ship is nice but not as much dancing as the CUnard.  Oh, well, I return on that one.  We gotta get Lizzie dancing.  I may not have time to check this board as minutes cost like the dickens on these ships, so tracy email me an update.  I am worried for Liz big time.

Rosemary (Mother Hen)

Posted 7/15/2010 12:01 AM (GMT 0)
Hi everyone,
Hodaya, so glad to hear that you're doing well!! I hope you continue to improve and get home soon. Please keep us posted:)

Jen,
I hate those uti's. Before surgery I had a few, and I've had 4 since my surgery 16 months ago. Not sure why, but I've had my share, too. Glad to hear the surgery was a success though. Do you have to take miralax, or are you going on your own?

I'm so sad to hear that Lizzie is still struggling so...it's been such a long time since she felt well. I hope and pray she can have surgery soon and start feeling better.

Tracy and Hodaya,
Don't give in and smoke! You will be so glad eventually if you can just kick this habit. I've never smoked, and I know I can't imagine how hard it would be to stop, but my dad died of lung cancer and I will always remember what a difficult time he had. Please try to stop this horrible habit:)

Tracy,
It sounds like you're doing great after surgery. I'm so glad you're feeling well....sound like you and Hodaya both have great attitudes.

I'm actually jealous of you two this week. I've had a hard time going even with miralax and have been drinking prune juice. Part of it is my fault; I've been eating whatever I wanted, and part is timing....I haven't been able to take my miralax in the mornings a couple days because I've had to be in meetings and not able to run to the bathroom, so I've felt horrible. I should be back on track tomorrow, but I still have good days and bad days. I run to the bathroom so many times and each time just go a little bit. On good days, I don't mind so much, but when I feel like I have the last couple days, I hate it. We're going on a 3 day cruise next month and I know I won't be able to eat much at all. We decided to try a 3 nighter before going on another long cruise. I just have to control myself around mealtimes....which is always on a cruise!!

Judy,
Glad you're having fun..

Janie
Posted 7/15/2010 12:26 AM (GMT 0)
Jen, it's so good to hear from you! I remember what a terrible ordeal you went through, so glad things are better! We'll never be "normal" but better is good!

Tracy, Hodaya.. DON'T give in! I DO know how hard it is to quit, as I quit 25 yrs ago! It really does get easier, and you new sense of smell and taste will amaze you! Both of you keep recovering!

Janie, I do find that when I eat what I want.. things really do slow down. I too sometimes go the little bit at a time.. don't know why!

Lizzie, just know you're in my thoughts and prayers..

Rosemary, what ship are you on? I know the Cunard is suppose to be wonderful! We sail on the Princess in October.. can't wait!

Val, did you get your pre-op appointment? I see my surgeon tomorrow.. and next week the hospital pre-op, starting to think about it more as it is almost time!
Posted 7/15/2010 2:44 AM (GMT 0)

Janie,

I am able to go on my own most of the time.  If I am at home all day I usually go anywhere from 4-8 times a day.  If I am out inspecting child care centers I can go 6-8 hours without having to go.  If I know that I need to be in a meeting all day I will usually take two immodium but then still will go as soon as I get home.  I don't have an extreme urgency to go the majority of the time and have plenty of time to get to a restroom.  

I still use suppositories sometimes to help move things a little quicker but that is not an everyday thing anymore. 

The only foods I really stay away from are pizza(just doesn't set well), never sit down to a salad but will have a piece of lettuce on a sandwich. I don't eat very many nuts and seeds.  I stay away from corn and brocolli.  The only raw vegetable I eat is celery.  It digests quite well.  If I eat any of the fresh veggies, nuts/seeds, lettuce it does not digest so that is how I know how long my transit time is....lol.

I am really pleased with how I am doing and life is much better without a colon!

Jen

Posted 7/15/2010 3:51 AM (GMT 0)

Hi Ladies,

 

Lizzie arrived back at her hospital at home a couple of hours ago. Cleveland was not controlling her pain at all, so Lizzie's family got in touch with her first surgeon, and he agreed to take care of her until surgery. She is back with a doctor she loves, nurses who welcomed her with open arms (and a big, specially-reserved private room :), and she is minutes away from her family. All of those things will make a huge difference as she will finally be able to rest and build up her strength. Pray for a great pain team for her that would fully control her pain, for deep and restoring sleep, also pray that they would get a new PICC line in and TPN rolling very soon. Her body needs all the help it can get to get ready for surgery; right now, she is not strong enough. Pray, pray, pray!!!

 

Much love, prayers, and many thanks to you all,

 

Allie

Posted 7/15/2010 4:23 AM (GMT 0)
Janie-So good to hear from you and that you are doing well!  Your bowel habits sound similar to mine; I usually go 3-10xs a day depending on what I eat.  If I eat a lot of wheat products I get backed up, if I eat hot, spicy foods (my favorite) then I tend to go frequently.  I also will have several times each day where it will be just tiny amounts  but that is normal for me.  Our whole body has taken on a new normal and we cannot compare it to someone with a colon.  I thought bc I was having one large bm a day for almost the past year that that was ok and how things were going to be for me until I stopped taking vicodin for my kidney issues and within a couple of weeks I went back to the above schedule which was my typical routine before my kidney issues and my gi told me that I wouldn't be like a "normal" person.  We are all very unique:) and I'm so very happy that this has worked for you too!!!!!

Janie-Hope that you get back on track, it's aweful when we don't go to the bathroom, I think it's worse now that we don't have our colon.  I hope you have fun on your cruise and the food thing doesn't bother you too much.  I know I don't really eat that much in one setting and I'm used to being on the low residue diet so being around lots of food doesn't bother me, though I really do like sweets-wish I didn't:)

Hodaya & Tracy-Hope you both can keep from smoking, I know it's a very hard thing to do and I'll be praying for both of you.  Keep healing and doing so well:)

Rosemary-Happy cruising:)

Jenise-Hope your able to enjoy some of this sunshine while trying to get through all the craziness of these days before you and your husband's surgeries.  Your both in my thoughts and prayers.

Peace and prayers,

Judy

Posted 7/15/2010 6:48 AM (GMT 0)

Rosemary, I have to admit...I'm jealous. Three hour transit time from your mouth to bag? Ugh, I average out at 16-18 hours without a colon. Motility problems, much?

 

Tracy and Hodaya, you can do it!!! Surgery = start of a new life. Make that new life cigarette-free! You both deserve it! So glad you are both recovering so well!

 

Marisa, I have terrible joint pain that comes and goes. I'm 24, but seriously feel like I'm 84 sometimes. I had a FULL work-up (longest blood draw ever!) by a rheumatologist last year, and everything came back textbook-worthy perfect. No idea where it comes from, but it's not fun, that's for sure. Let us know what your doctor says!

 

Had a follow-up with my GI on Tuesday- he wants to see what happens as biofeedback (my goodness, that stuff hurts) continues. After that, he may send me back to Mayo for another opinion up there, and to see if they have any new motility meds in the works.

 

Happy Thursday!

 

Allie

Posted 7/15/2010 11:43 AM (GMT 0)
Tracy...... OOOMMMGGG!!!!! i just watchd that film you said on youtube........ MAN THAT'S POWERFUL VIDEO!! you see, it's like no matter how much they tell us how bad it is for you, and we know and understand it logically, it just doesn't sink, but you know why? cuz smoking is not and nevr has been a logical act, it's a desire, this desire is like aburning fire that burns all of our logic i'm still in he hosp so havn't smoked yet but this movie did alot to me. thanks SOmuch for telling me about it. about the loop, long story short, it's not the right thing for me/us. i just wish that when i asked him about the end one, he wouldn't have said "yeah sure, no problem"...... he should have explained it to me in the first place and not give such a surprise, you just don't do this to patient. in any case, i just keep reminding myself it's the right thing and that's what important. Rosemary, enjoy your cruise! Jen, so very happy for you! remember how optimistic i always was about your surgery? i always told you that i beleive you can have great success b/c you don't have pelvic floot dysfunction and i'm so glad i was right. so anyways, what is UTI? (asking for the second time......) Jenise, i admire you for quiting smoking! i want you to do GREAT after this coming surgery... the best!!! Janie, you're too funny for being jealous of Tracy and me lol..... but girl im so happy for you, CONGRATS on going for the first cruise since surgery!!! it is the firt time since surgery, isn't it? Allie, sending prayers for Lizzie, and i hope you can also find smething to help you. im still in the hosp and will stay untill sunday, that's when my surgeon will remove the little stent that holds my loop, then i will practice changing the wafer and all while the stoma nurse watch. after the stent is gone it should all be easier peasier ;) mean time, my stoma is farting HUGE FARTS!!!! i mean it was all night and from the time i got up at 6 am till abou 10 it was nonstop!! so i just closed the door of my room and never went out....... i just cannot go in public like this, no way!!!
Posted 7/15/2010 5:20 PM (GMT 0)
Hodaya,

A UTI is a urinary tract infection. Painful, irritating annoyance. Anyway antibiotics clear it up but I feel like I am on antibiotics all the time.

Went to OBGYN today and now they think I have fibroids on top of everthing else. Had a biopsy and go for ultrasound Monday. Just one more medical issue to deal with.

I am glad you have quit smoking! Stay strong and don't give in. Praying you get better soon.

Jen
Posted 7/15/2010 9:52 PM (GMT 0)
Jenise - How did the appointment with your surgeon go today?

My pre-op at the hospital is next Friday morning. I need to ask when I should start fasting. Hubby picked up the colon prep kit from the drug store a couple of days ago. The directions are to use the prep kit beginning the day before the surgery. One good thing about it is that it is only half a gallon. Oh, and I can use the cherry flavor.
✚ New Topic locked
1234567891011