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Total Colectomy Part 37

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Posted 9/28/2010 4:49 PM (GMT 0)
I was released from the hospital yesterday. I've been really nauseated and having trouble finding food that sounds good. I've been living off of tomato soup, cherry 7up, and cantelope. My surgery was a subtotal, so I still have part of my sigmoid and my rectum. As of this morning I actually had some substance to my BM's and all the blood is gone so that was exciting. I'm still having some pretty serious abdominal pain, but the vicoden is helping. Its unfortunately also plugging me up a little. Hopefully that evens out soon...
Posted 9/28/2010 4:49 PM (GMT 0)
I was released from the hospital yesterday. I've been really nauseated and having trouble finding food that sounds good. I've been living off of tomato soup, cherry 7up, and cantelope. My surgery was a subtotal, so I still have part of my sigmoid and my rectum. As of this morning I actually had some substance to my BM's and all the blood is gone so that was exciting. I'm still having some pretty serious abdominal pain, but the vicoden is helping. Its unfortunately also plugging me up a little. Hopefully that evens out soon...
Posted 9/28/2010 5:42 PM (GMT 0)
Hodaya, thanks so much.  Well my doc wants to keep me on a 1000 mg of Depakote at night so I get to be groggy all day for a month.  My disability evaluation is today to see if they are going to continue to recieve it.  I hope so or I am screwed, plus I have to try and stay awake while he questions me is the bigger prob. at the moment...

Love to all of you...  Lizzie, take one day at a time you poor sweetie.  You have really been throgh the ringer so your tough, and things we hope will go in a positive direction for you.

Leslie

Posted 9/28/2010 6:21 PM (GMT 0)
I have never heard of a fistula on a stoma such as Lizzie may have. I'll google it and see what it says. Lord, I hope it is not that. That girl deserves a break! Rosemary
Posted 9/28/2010 6:33 PM (GMT 0)
Hi Allie,

Yes I used to ride horses a lot, growing up in Michigan. I had a friend who owned 2 horses; she kept them at a riding stable but they were never "rented out" so just Debbie and I rode them. We went out on long trail rides and had lots of fun! One time though we were riding bareback; my horse spooked and took off down a hill. I slipped under his neck (still hanging on as he ran down the long hill), but I finally lost my grip and fell off. I was 14 yr. old and had to go to school with 2 black eyes that resulted from the concussion I received! Anyway I didn't let that experience scare me away from horses for long. After that I continued to ride (mostly western) and I also took some English Riding Lessons. I love horses!

Please say hi to Lizzie for me the next time you talk to her. I have been texting her but haven't heard from her in a while. I pray she starts to heal and feel much better. She is such a kind person!

Allie, I hope that things start to go better for you soon, also.

Gilda
Posted 9/28/2010 11:20 PM (GMT 0)
Hello loves....

Sorry again for the delay. I will find out tomorrow when my test for the bump on my stoma that has a hole in it that appears to be some type of fistula. I have now tried 3-4 different types of appliances and have gone through different companies. The potential fistula and indent from my old stoma scar are causing major issues eventhough we have tried every trick of the trade both here and CC had to offer. I have had this new appliance since the 24th and at fisrt I thought it was going to work, but not the case. I have been unable to go longer than 17 hrs without changing the whole appliance and this new one not only leaks, but has given me much worse skin breakdown and yeast on my skin. I called CC today and spoke to the ET nurse that saw me on the 24th and she sadly said that she knows with how well I work with my stoma and being a nurse myself how I can try and rig anything to work to stop the leaking. As of 5 am this am I have had 4 leaks and one was all over my clothes covered and the other all over the bedspread, brand new carpet, and myself. She and the other ET nurses feel appliance wise there is nothing else that is going to work for this stoma. It is oddly shaped (triangular according to ET nurse) and that combined with the conture of the scars I have acquired after six surgeries my option is going to have to be to move the stoma to my left side. I asled her and she informed me that this is as big as any of my other major surgeries and my 24 cm inscision will have to be opened up again. Problem is, he wants to wait six months, and I cannot do this for six months. Also, I run out of disability in April and my husband works for the State of MI and right now his job is "limited term" and eventhough we are not too concerned about him losing his job as the unemployment rate in MI is horrrible and he is applying for higher up positions as he finished his masters earlier this year. I was instructed to call Dr. Stocchi tomorrow and see if he will settle for 3.5-4 months post op to make things easier on my husband and I and I have never had any issues with surgeries in close proximity. Yes, each gets harder, and recovery is longer, but I am hoping we can compromise and please pray that he will agree. I am very sad, emotionless, depressed, and isolated. Gilda....I have been moving the last 4 days and sorry I have not had a chance to get back to you sweetie. I need an update. I need an update on everyone. I am so sorry that this whole disease has consumed me this last six months I have not beeen as good at offering helo and support to others, and for this I truly apologize.

Please pray for Allie.....she is very stoic when it comes to letting on how hard things have been for her and she really needs Mayo to see her soon. Pray that all the necessary documents get there SOON and the appt can be made in a very timely manner. Since leaving here in MI she has hit a low and it breaks my heart because she tries so hard and she is just as amazing (more so) in person than she is on here to all of you. I am planning a ten day gett away to TX to see her as soon as I can get it booked. Thankfully she knows how to help me with my leaking stoma and does not find it gross like some would.

My blessings and prayers to you all. I truly think of each of you everyday. Texting me is the best way to reach me and now that I am moved I have more time to respond and I would love to hear how you all are doing. If you need my number many have it......

Got to get back on the road so I can take my meds as my spasms are out of control. Love to you all. Forever in my heart.

Lizzie

Posted 9/29/2010 12:11 AM (GMT 0)
Lizzie,

Good to hear from you. Did CC make an impression of your abdomen with a soft material then say they could get an appliance custom made? I'm not sure how this would be done, but I know that it is done. Give them a call and ask about that. Bless you.

Rosemary
Posted 9/29/2010 1:41 AM (GMT 0)

Hi Everyone!!!!

Wow, so much time has passed since I have been on that I haven't even had time to catch up on the posts.  I tried to quickly skim through them but as always everyday is so different for everyone.

Life at school is crazy busy and I'm trying to just find my balance after all that happened with my health and legally last year.  I've been trying to read the book The Four Agreements by Miguel Ruiz and this has REALLY helped to get me through stuff:) 

Healthwise: I had to be put on another kidney med 3xs a day to prevent stones and go see a nephrologist on 10/11, am looking at a possible very strict diet along with the low residue diet I'm already on for the colectomy so I just might loose the weight I gained from my sweet tooth:) Have to also have a lot of bloodwork and extensive urine tests done again next month.  Some things never end, but this is better than the stones and the STENTS!!!!!!

Colectomywise I am doing quite well except the new med causes a lot of nausea but I already take zofran 2xs a day so that helps; it also either causes constipation or diarrhea and just my luck with my messed up system I get constipated so we are working on that, using miralax and grape juice.

Anyway-looking forward to things working out well with the new med & new dr. and having a fanastic school year!:)

Just going to address a couple of ppl till I can read back and find out about everyone:

Leslie-So sorry you're going through so much and hope you get some positive results/answers.  I have taken depakote a few times b4 as I have bad migraines, used to take up to 1000 mg also.  I have a very high tolerance for many drugs so it didn't bother me but it does cause weight gain:(

Future-Glad your surgery went well, please take it easy and let ppl do things for you even when you start to feel better.  Most important***stick to the low residue diet***  Hope you feel well soon:)

Rosemary-Have a blast on your cruise; happy dancing:)

Lizzie-So sorry I haven't been in touch; will call soon and explain all that's been happening. Love you always XOXOXO

Hodaya, Marisa, Janie, Jenise and all I've missed: Love and hugs to you all, miss you, will be in touch soon.

Peace and prayers,

Judy

Marisa, Hodaya, Janie, Jenise

Posted 9/29/2010 1:44 AM (GMT 0)
Rosemary-

Interesting idea, but No.....they said as well as they know mw and since she had just seen my stoma. I have had the same nurse since surgery and she had others come in and give theor opinion they felt that they had exhausted all options appliance wise.

I do not want another major ssurgery, but I do not want to live like this. I am trapped in my home, depressed as ever, cannot enjoy life as I though I would regain. I am still so swollen just in my belly and this has never happened after surgery.....its like all the tpn weight settled in my belly. I HATE IT! I am hoping to lose about ten lbs, but maybe i should just wait to see what surgery does. I am not comfortable in this body as I was 91 lbs and then with them doing something horribly wrong with my TPN I have been suffering ever since with just this extra weight in the belly area and I am not sure if its still swelling. I am a little over five weeks I think post op. I know surgery is inevitable for me to have a life, i just wish I could understand why everything has to be so hard.....it just cant to east for me. THey doubled my antidepressant and I am hoping it helps as I never want to get out, talk , see people, etc.

Love to you all.

Lizzie

Posted 9/29/2010 2:16 AM (GMT 0)
Lizzie   Girl you need not apologize to anyone who loves you on here.  We all know to well that sometimes are lives kind of go in spells, where your not feeling as crappy as the day before, then you feel so crappy that you cant get out of bed, or in so much pain its just hard to keep going.

So girl, your such a kind soul and so nice of you to go see Allie, that poor girl, I just pray that she gets what she needs.

Rosemary, your the one who always looks after everyone else so don't forget to take time for you.

The part I love about this forum, it has brought people who are suffering, and not getting anywhere with their doc's, and not getting proper information.  This site has got it all, everyone feels free to share our actual suffering, and the not so pretty info that you would not share with even your closest friend or family.  We can feel free to just be us and say what is going on with us with out anyone looking down on us, or feel like we are always complaining about something.

Its true we have to talk to someone and I will say especially for myself, I have issues daily and sometime hourly, or constantly.  So on here we are not judged, just helped with suggestions of what has helped someone with or where to look or go for help.

For me I have lost my best friend a little over a week ago, she told me she had a ear infection and was not feeling well.  So I shared some news I had got that my brain has Atrophyed, and she started yelling at me..she said this is not a contest on who is the sickest...What the heck...I guess she is sick of me being sick and yelled at me and was so rude, then she said this is goodbye...wont talk to you again.

Well I was just dumbfounded...  I know that I have been ill for years, and cant go party with her and her friends so I guess my friendship is expendable...She drinks alot, she is a alcoholic, but she never gets too smashed when I am around and she gets mad if I do go to a bar with her when I can, but I dont drink, and that makes her mad.  So guess I was wrong, she was not really ever my friend because it has always been one sided.  She always use to tell me that I was a better friend to her than she has ever been to me and I finally believe it.

The said part is that I just found out that her mother has to have her stomach removed,  and it takes everything in me not to call her and offer to help.  So that makes me sad.

So wish me luck having my MRI tomorrow and will be on pins and needles till I get the results...

Love to all

Leslie

Posted 9/29/2010 3:16 AM (GMT 0)
WoW Leslie, that is rough about the friendship that was, but......sometimes we have to look after ourselves. Like I never did. I kept on with people that eventually took me down. Don't let that happen to you as hard as it is to let go.

Lizzie,

Man oh man. I can't tell you how sorry I am that you are facing yet another surgery. I pray to god that your new stoma works. After all you've been through this one is at least working......however, I totally see your point that you cannot go anywhere with your appliance leaking, not to mention your skin going to pieces. I just want so much for you to get a break! a good one that is. Wish you all the best with your upcoming surgery. Every prayer I have will be going your way.

Judy,

WOW! You are a true teacher. Somehow we can be going through real bad crap and the minute we hit that door we are on overdrive and all into the job. The kids are blessed to have you. I don't know how you're doing it.

I have to go have colon mucous suctioned out of me tomorrow so I won't have to struggle with it during the trip. My new surgeon who took over for the one who made my ileo stoma is going to look at it. Means I'll have to change the appliance at his office at 4 p.m. The thing will be active, oh what a mess is coming his way. Oh, well, better it be active than NOT if you all catch my drift.

Yeah I gotta relax on this whole suit thing and trust in my atty's and that the truth shall prevail. Somehow I get all caught up in it when I'm home and not when I'm out to sea.

Good luck to all of you I haven't mentioned. TIred gotta go to bed. Big day tomorrow.

Rosemary (mother hen)
Posted 9/29/2010 4:41 AM (GMT 0)
Rosemary   Your right, I am not going to sweat the small stuff.  I was just told that they took my daddys best friend off of life support tonight and they expected him to die within minutes and that was 6 hrs ago.  My father passed last October 19 th and soon his friend will join him.  Kind of like losing my daddy all over again, its just been a sad day.

But I feel pretty well and for that I am thankful for.

Leslie

Posted 9/29/2010 12:48 PM (GMT 0)
Leslie, i lost my social life to my illness long ago. when you're sick and in pain most of the time, socializing is a challenge. then ppl start to draw away from you, cuz they just can't stand hearing about your issues any more. they can be supportive at first, but when it goes on for years, they just get sick of you, it depresses them to hear over and over how unwell we are. the human being looks for happiness and there's so much deppression they can take..

some of my supposed to be best friends even started to believe that I AM the one to blame for my health problems and that i like being sick and draw attn and all that crap... that is such bull, cuz for years and years i never mentioned anything to anyone about my condition, noone knew, cuz i never wanted anyone to know. it was only after my first surgery that i couldn't hide it any more and it was all found out to everyone. they at first showed much care and concern to me and i thought they really cared, so i started to share my condition with them, but when things didn't work out for so long, they started to get sick of me. there are maybe 2 ppl who are still in touch with me and really care.

also, when you're sick and your body betrays you, not only that you're physicaly out of energy to do anything or go anywhere, but you're also emotionally deppressed, so maintaining friedships this way is a challenge.

so sorry to hear about your dad's friend, that is sad.

Lizzie, i can't tell you how sad i am to hear you need more surgery sweet girl, but also staying like this is impossible! i just so want things to work out for you at last. you are a strong person going through all you have, i pray this is your last struggle. you deserve your life back. staying like this for 6 additonal mons is irrational! i really hope you don't have to wait that long. love you to the sky and back!

Rosemary, good luck with the sunctioning!

Judy, hope things work out for you with this new med and you feel better, love and hugs!

man, everyone here are going through so many issues.... G-D bless us all!

i had a job inteview yesterday. it's not definite yet. my current boss is supposed to be back in the country on friday, but he won't be in the office before sunday evening, so only then i'll be able to talk to him. i want to tell him i don't want to go back and just get this whole thing over with. i feel more comfortable starting over in a new place.

my system is really slow :( the things that usually work good for me, don't work as well as they did about 1-2 mons ago. gosh.. it's been barely 3 mons since my ileo op and i'm always in fear that in the future i will again reach to a point where nothing works for me any more and i'll start to have blockages every so often and won't be able to eat etc.. it already looks like things are slowing down. in the past week my belly is SO swollen and uncomfortable, cuz not much is coming out. i just drank prune juice (in addition to the pear juice that usually works) and it helped some. i'm just really worried that even with an ileostomy i'll still be constipated and obstructed, and nothing will work for me any more, cuz at this point, there's nothing more to offer me for help.

i also started to see a social worker to talk to and to work with me on starting my life again, be active etc. she's wonderful and i like her very much. i had my first meeting with her last sunday and will see her once a week for the next 3 mons. she was really thrilled when i told her i wanted to volunteer in a hospital. she also thinks it's an awesome idea :)) i just need to know where i stand workwise, so i can plan my schedule with volunteering. i hope it's not much longer before i start working again, cuz i feel ready :)
Posted 9/29/2010 4:26 PM (GMT 0)
Hodaya,

DO ask your doc about your slow down. Maybe there is some med they can give you to speed up that small intestine. Good Lord, I feel for you.

Good for you though with looking for that new job and volunteering. I hope they can get your gut issue dealt with so you can go on with your new life.

Rosemary
Posted 9/30/2010 12:00 AM (GMT 0)
Hodaya  Your so right I never mentioned anything for 10 years..then it was like a snowball effect, I had one surgery after another, and always something I dealing with.  Ya know then they should never ask how are you doing then?  LOL cuz I will tell them but not no more...  I dont need those kind of friends anyways....so had my MRI today so now it just waiting for the results, but I must say that the person doing the MRI showed me my brain, and it looked good to me , but what do I know>>>  he he...

Catch ya all later.

Leslie

Posted 9/30/2010 12:26 AM (GMT 0)
Les,

Glad your brain looked good to you. :-) After all I been through wonder what mine would look like? I don't want to know.

I saw my colon today when they suctioned out the mucous and it looked pretty darn good for one that is in disuse. I SOOOOOO wish I had connected with Lahey Clinic for my original situation in 2006. They would have given accurate diagnosis, testing, and appropriate surgery or therapy or meds or whatever and I would NOT have gone down the road I went. Unbelievable I was in the wrong places at the wrong time. At least I finally caught up with them and they did what they could to save me.

Isn't fate and geographical location all key at certain times in our lives. Hope your doc says your brain looks good.

Rosemary
Posted 9/30/2010 5:12 AM (GMT 0)
Rosemary   Yes where ya live does make a difference I believe that.  Look at everything that you and others have had to go through.  Makes my surgery look like a walk in the park.

I too hope my doc thinks it looks good to , I tried to get the tec to tell me if there was any plaque on it, or did they see anything that looked odd to them,,," besides me ofcourse"  but as always they can't say anything.  I have a lot of friends that work at the hospital here but none work in the MRI dept.

So now I just wait, and pray for you guys and me...

Leslie

Posted 9/30/2010 8:37 AM (GMT 0)
Hoddaya,

maybe you could try domperidone/motilium or reglan/metoclopramide whis has some nasty side effects but is still well tolerated by some folks.
these two meds are the most common drugs that can stimulate motility but not in all.

you could give them a shot.
Posted 9/30/2010 8:56 AM (GMT 0)
I had my heart ultrasound yesterday. Obviously the enalrged liver and dilated hepatic veins/vena cava inferior are not due a relevant right-sided heart failure. I do have some mild abnormalities which I knew so the finding did not change.
However, I do have tachycardia and shortness of breath when climbing the stairs but maybe this is not caused by actual heart dysfunction.
It could be still related to heart valve damage caused by a carcinoid tumor and symptoms just precede actual echocardiographic manifestation.

At this point, cardiologist believes that the observed slight heart abnomralities are not responsible for the liver and veins alteration and feels that the cause must be searched in the liver itself.
I did some research and there are not many diseases that can cause hepatomegaly and veins deformation.
Seems as if liver metastases/tumors or tumor presence/infiltration into the veins are always mentioned.

I have asked for another appointment with the neuroendocrine oncologist to discuss these findings and to ask for a more sensitive investigation of the liver and a CT/MRI of my gut.
I do know that liver metastases do not neccesarily show up on conventional US, especially if they are small and stem from neuroendocrine tumors.
I do hope that there is a cause for my endocrine symptoms even if this really meant a metastasized tumor as they have become really bad and I can't handle them in addition to my motility/bladder issues.
Moreover if they found something on imaging chances may be better for me to get well evaluated; maybe the tricky hormone assessment will then not decide about futher proceedings, whether there is the possibiliy of a neuroendocrine tumor or not.
Posted 9/30/2010 11:38 AM (GMT 0)
Hoddaya

may be you have developed hypothyroidism since you were unable to have a regular and normal sized diet? Sometimes it sleeps and won't manifest unless you have major stress like a surgery. I did not develop hypothyrodism before my third bowel surgery.
Hypothyrodism can really slow the functions of all organs down, and so your gut.

it is just an idea - may be you should have your levels checked - and not only the TSH, but most important the free T3 and free T4 (both!!).
Posted 9/30/2010 7:34 PM (GMT 0)
lol you gals crack me up :p well i think my brain must have damaged too after so many yrs in the toilet :( and even when i wasn't physically in the toilet, my mind sure was.... all the time thinking of... pooping!!! my brain had no chance to progress furthur than that ;p oh well :/

how long till you get the result, Leslie? hope it's a good one.

i know exactly what you mean, i learned my lesson and from now on, each time anyone asks me how i'm doing, i'm gonna say i'm ok and if they try to ask furthur questions, i'll just politely say i'd rather not talk about it. i can talk and laugh about anything with everyone, but on this subject, not a word to anyone any more except for my family and you guys of course. after what happened - lesson learned!

Rosemary, i don't want to take any meds yet. i'll see how things go. so far it's still ok, not as great as it used to be couple mons ago but still ok. how were you able to see your colon? oh hon, seeing you colon looks healthy and all has brought up all those bad feelings and regrets all over again. there are so many times in our lives when we wish we could turn the wheels back and fix what was done wrong.. i wish i could turn the wheels back for you.

Sarah, i hope your drs make some progress soon with your diagnosis. not knowing what's wrong is the wosrt. i don't want to start taking any meds yet or any tests. i just hope things don't get any worse. as long as things are the way they are now, it's still ok.
Posted 9/30/2010 8:04 PM (GMT 0)
Thanks Hodaya. Saw my healthy colon now unusable during the sigmoidoscope suction of rectal mucous which I really needed. Can just watch it being done on the TV monitor. Totally cool. Plus this doc was sooooo gentle I hardly felt a thing. Yeah, seeing a healthy unusable organ due to the original damage did bring up some memories, but luckily today I'm packing for Africa. Yeah always will want to turn back the hands of time, but hopefully my suit will do some good as do my complaints to our state med board regarding the unneeded 2006 disaster surgery. That's all we really can do. Then just hope it does some good for saving future patients. Rosemary
Posted 9/30/2010 8:57 PM (GMT 0)
glad the suctioning wasn't painful :) and i'm glad you're going to have fun on your cruise!!
Posted 9/30/2010 9:35 PM (GMT 0)
Thanks Hodaya. Keep your fingers crossed for me. Rosemary
Posted 9/30/2010 9:52 PM (GMT 0)
Hodaya
  I should know something Monday or Tuesday..  Ya before my surgery I had poop on the brain 24/7,  should I eat or not was always the delema, so mostly did not eat and lost 115 lbs...  So no one can tell me anymore that I am full of crap...he he

Rosemary, so happy that you got to see your innerds, I always watch too....pretty in pink....

Peltizer'  I have Hypothyrodism  for over 20 years, the tumor is so large they want to take it out but I have had too many surgeries for now ty.  Your thyrod controls a lot of what is going on in our bodies, if you read about it , it seems endless..

So everyone have a great colon free day..he he

Love ya Leslie

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