TOTAL COLECTOMY PART 22

Janie,
i'm so sorry those issues are not solved. i was also asking b/c Judy said to me once that she also had those rectal probs and now she doesn't, so i was hoping it was like that for you too, but than again Judy REALLY watches what she eats, and you also said that when you watch what you eat, then you're o.k, so if that's only what it takes to make things going then it's not too bad i suppose? cause w/ CI no matter what we eat, it doesn't help, so now, comparing to before the surgery, it's not too bad, cause now there's a way to deal with it, am i right?

anyway, i wish the pelvic floor dysfunction didn't have to accompanies CI, cause seems like CI affects the pelvic, cause we all have some degree of pelvic floor dysfunction, and i think that the PFD happens b/c of being constipated and bearing down for so many yrs.

i hope you feel better tomorrow.

i'm going to the psych guy today, i don't know if i should expect anything yet, it's only my second meeting w/ him. maybe i should make an appt to the surgeon already, i don't know, we'll see.

be well everyone.. Linda is really getting me worried.

Janie, thank you for your comments. No, girl, keep complaining if you need to. Sometimes that is the only way people really hear you. Most people have no clue how it is to have the problems that so many in this chat room have. And yet we keep on with our lives and do the best we can---------and, by golly, it better be good enough.
I will see my dr. soon about my anemia. That's what I have been dealing with in the past 6 months------extreme anemia. I had a hard time walking from my car into the grocery store because of shortness of brearh and I slept alot. He put me on iron and B-12 shots and it is better but still don't have the energy I think I should have. When I see the dr. I will have lots of complaints for him----------make his day.

Janie, you don't want to get constipated or it could cause a blockage in your small bowel. Once in awhile I take a dose of MO just to make sure things are flowing and open
Hope things get better for you soon.

Dida.

Hello, everyone!

I was able to have hand-assisted lapro total colectomy on Wednesday morning. I was able to retain my rectum, the small intestine was attached to the rectum, and I will have no ostomy. The surgery was a great success, and I was up and moving the next day. By Friday, I was having BMs and started solid food. My blood sugars (I'm diabetic) were back to normal by Friday night. Saturday morning, a mere 72 hours after surgery, I was released from the hospital. I have been at home, resting comforatably, walking a bit, showering daily, and eating full meals since then.

I'm having about 12-15 BMs daily, mostly liquid. I'm having quite a bit of pain, including some severe pain in my neck and shoulders, but take Vicodin every 4-6 hours to keep that in check. I've had no nausea whatsoever, which I thank the anethesiologist for... I explained to him before surgery that anesthesia makes me quite ill, so he gave me a great cocktail of medicines to prevent that and I wore a motion-sickness patch behind my ear while I was in the hospital. I am taking it easy, but also trying to walk a bit more each day.

The entire colon was sent off to pathology, and we should have the results by the end of the week.

I wanted to share a VERY positive experience with everyone... it was beyond my highest expectations! I had a great team of doctors, surgeons, nurses, caregivers, family and friends. I had mountains of prayer supporting me. I did lots of research and knew what to expect from past surgery experiences. Despite that, any number of complications could have occurred, but I am blessed that everything went beautifully!

I pray the very best results for each of you going through the prep, the surgery, and the recovery. This community is such an amazing support!
Donna Rae

Yea!!!!! So nice to know someone is having a good and positive outcome from surgery. Take good care of yourself. Hope your recovery continues successfully.

Dida

hi Marisa.. did you meet w/ the surgeon or the gi dr? how did it go? i hope you had good news. as for me, i'm not sure, cause i thought about it (A LOT) and figured my drs only want my best interests, cause really, during the 16 yrs i'm suffering from this prob, i've been to drs who said that my condition is too severe and complicated that they can't help me, so i learned that when a dr thinks he can't or don't want to help, he just sais it.. but now i think that if they didn't  want to help me, they wouldn't put so much effort in arranging this whole thing and plus, they don't even charge me or the medical services for this at all, so i truly think they are just trying to figure out if i'm emotionally ready, i just hope they realize asap that i'm ready. i see the psych guy every monday and just have to be patient now. if they really didn't think i should go for surgery, they wouldn't have gone through all of this. welllll, i truly hope i'm right, cause all of these conclusions are only my assumptions since they're avoiding giving me a straight answer when i ask them what's their plan.. what do you guys think?

and as a matter of fact, i suppose these meetings can't hurt. maybe it's even good for me, who knows..

on the other hand... (sorry i'm such a PAIN!!) i won't lie and say i dont have the fear they'll eventually tell me "sorry, we just can't and don't know how to help you.."   i'm so scared of that sentence, cause i've been to this movie before. SOooooo, i really need you guys opinions on this, what do you  make of it???? are my assumptions making any sense to y'all???? pls help me.

thank you Lizzie, for your nice words.

gosh i truly feel for you for what you're going through, i don't know what i would do if i were in such a situation... gosh i'm so sorry, Lizzie, i'm so sorry you're having such a hard time. i truly hope for the best for you.. 2 more weeks, i'm praying for you.

yeah, i too wish we could have a way to get in touch w/ Linda, can't stop worring.

Hello Everyone,

I'm so sorry to have you worried about me. The day I got home from the hospital (I'll backtrack in a moment) my dad went in to the hospital for emergency surgery with a blocked small intestine. So he had that  along with many hernia's repaired. He's still in the hospital with the ng tube and much pain.

I was in the hospital for 17 days. Was told it would only be 4-7 days. The surgery went well, had to have an open incision and was about 5.5 hrs long. That first night after the surgery I got a 103 fever and needed a transfusion. I just remember being really hot and sweaty. I was lucky to have an epidural to help with some of the pain. I learned that my incision needed to be longer than anticipated so the epidural wasn't placed quite in the right spot and that's why I felt the pain I did. Oh well. Had a catheter until they took the epid. out which was about the 4th day? I started going to the bathroom I think the 2nd day after surgery but they said it was still from the prep because I hadn't cleared out like I should have.

I started with ice chips, then water, clear liquids and on day 6 I had 1/2 c. of jello, felt ok so the next day I ate 1c. I started to get bloated, swollen and by the end of the day I was urping like crazy. Soon vomitting. Had x-rays that showed a "loop" in my small bowel. So they figured I ate too much too soon and now had a blockage. I had to get an ng tube put in and I have to tell you that was the worst part of the whole surgery deal. I cried like a baby, I was throwing up and the nurse is telling me to swallow so she can get the tube in my nose and down my throat. Once it was in place and the stomach acid was suctioned out I felt a lot better. Had that dang tube in for 6 days, but I kept warning my dr. if he takes it out he better not have to put it back in. I couldn't handle it. He decided to take it real slow with me and food. I also had to have  a picc line put in to be put on nutrition, and so they wouldn't have to keep poking me for blood draws and such. That was an ordeal too.

I don't know why they do it this way but an iv nurse has to try getting a quite large iv thingy into a vein and thread it from the inner elbow to near the heart. She couldn't get it done and I was so hurting from her attempts. So I had to wait for internal radiology to do it. They got it done pretty quickly with much less pain. The nurse told me she had to give it 2 extensive attempts before internal radiology would do it, but I.R. told me they don't know why they put patients through that torture and not just send them down to them.

So with the ng tube in I was hooked up to the suction thingy on the wall on one side of me and to the iv pole on the other side. Oh, and the numo boots I think they're called to keep the circulation going in my legs. Boy did I feel like like a monster.

Someone was saying how they felt like such a burdon to their doctors all the time and that's how I felt everytime I had to ring for a nurse to unhook me so I could go to the bathroom. But we really shouldn't feel that way.

Got the ng tube out after 6 days ...  did I tell you I was npo those six days? I had no appetite anyways. Lost 10 lbs in 11 days. Again started on ice chips, very little. Then water sips, and progress up to full liquids and low residue solids. That's what I am still on now. That's just low fiber. Supposed to eat 5 small meals a day. I still don't really have an appetite, but I'm sure that'll come in time.

Since I've been home I have an infection going on in my incision, so went to a clinic to get 2 antibiotics. The picc line site is swollen now and hurts like the dickens. I also am having lower back pain that started last night. I'm hoping it's nothing. I called my surgeon's office and have an appt. with him on Friday morning.

Now I have to say to those of you who are waiting for surgery or wondering about doing it yet, I am extremely happy that I did it. I have control over my stools. They are still pretty loose, I go every time I have to pee but I figure so what. I probably go about 5-6 times a day now, maybe once at night. I wouldn't care if I went more than that. It feels so so so much better than being full of toxic waste that won't come out.

Ask any questions if you want. I'll be checking in daily now. Welcome to the new members, this "family" is awesome. No one else understands like we do.

Linda

Marissa,

Please don't let my story scare you from the surgery. Even with all that happened, I would do it again and I am only a bit over 3wks post surgery. I'm still dealing with stuff from the surgery such as the infection, but that will be healed. I am so happy to be able to poop when I go into the bathroom! And I'm not in there any longer than a few mins to maybe 10 mins. I was scared after hearing some of the bad experiences on here too, but there are good ones too. I sure didn't want to be dealing with this issue in another 10 or 20 yrs from now and I had been through all the tests, meds, laxitives, you name it. It wasn't going to get better any other way. I think the younger you are the easier it is to heal. There are some really good outcomes in this forum. I got discouraged for awhile but I kept trying to remember each day brings me closer to not having  to deal with this crap anymore!!

By the way, a nurse felt so bad for me being in a double room and having roommates coming and going while I stayed the same that she put me in a private room. That was a nice perk!

Man Linda- was it good to hear from you and what an ordeal:( I am so happy you are doing do well now and hope than can take care of the inscisional infection. I was SOOOOOOO worried, but so happy to hear from you:) Please keep us updated.

JAnie- Isnt it such a struggle to find out what and what not to eat. I am goint through that as well.....I have no appetite till about 2 pm and then i eat a little and a little more about 530pm, but I am dwindling, I was 100.6 this am, but 103.8 this evening so I guess that is good. I have had horrible experiences, I feel like I have a curse. I saw my oco on Fri and he thinks I need a nerve block in my back, afer this prescription of percocet I have gone through 110 of those and over 100 vicodin, this is normal. I am also in xanax, celexa, and zofran, and compazine for nausea and depression. My depression has been very bad. I am not even a smoker and I have been :( I feel like I do not know who I am :(

Marisa- thanks for yout thoughts and concerns, they are truly appreciated.....I would be nothing without all of you, nothing. I am afraid if I slip any further what I will become.

Hodaya- You know I love you !!!!!!!! and I pray anf think of your beautiful soul daily :)

Lori- I emaliled you sweetie,praying for you and strength.

You all are a part of my famile from now until forever, whether you leave and get better and never come back I will never forget any of you or your stories. My wonderful and supportive hisband always wonders who I am talking to.....I tell him, friends who understand me like no one else can.....friend you need to pray for:) and he does.

Lizzie

Hodaya,

I'll bet you are so tired. Patience. How much more patient does a person have to be after going through this for so long. It gets so dang frustrating. I'm praying it won't be much longer for you.

***********

I know I'm feeling better than I did when I got home 1 week ago so I must be getting better. I am still tired most of the time, but it sounds like that is normal from reading everyone's posts. I have a horrible time sleeping for some reason. I think it is from lower back pain....not sure if that is just healing or what. But will talk to the surgeon tomorrow about it when I go in for the infection.

 

There was a time when I was in the hospital that I felt like I was getting no where. More problems just stacked on top of another instead of moving forward. I got very scared then. But now I can see it was just not knowing what was going to happen next. I learned to just make goals for that one day. For example, just rest and walk were 2 goals I would have for a day. I had to stop my mind from going ahead and saying "what it....". It really was a matter of one day at a time.

 

I agree it with others that it was not a fun proceedure, rather unpleasant but SO WORTH IT! If your surgeon says there is a chance you may need an ng tube afterwards, to be honest I would tell him to put it in during surgery and if it's not needed then you can get it taken out later. Having it in is not as bad as getting it in. But I want to say that whatever proceedure you are going through, it will end and it is to make the outcome better. I really think it's important to take things very slow when recovering. Very slow to take in liquids and such. I always told them I'd rather spend an extra 3 days with that tube in than to have to come back and spend another 2-3 in the hospital in pain.

 

I mentioned my dad and his surgery last weekend. He told me later that he prayed for God to give him my pain. He then got very sick and that's the day I had a turn around with attitude and walking. I don't think that is a coincidence. He's having trouble with shortness of breath and the dang ng tube.

 

Thank you everyone for remembering me and for your prayers. I came to this forum to learn what others went through with the surgery and it was very comforting to hear that even though it was tough, it was well worth it. I'm in that club now too.

 

Hi guys.....

Hope this finds you all well......been having a rough week, nause, pain in back, and pannic attacks.  miss u all

lizzie

oh my gosh, Judy!!! i'm so sorry you've been through such horrible experience, how terrifying!!! i'm so glad you didn't end up the way your gi and surgeon said you could have, i'm so glad. i can't imagine going through all of this.

i'm glad your gi and surgeon took over things and gave you the right treatment, thankfully, they were able to help you out of this whole mess, G-D bless them!!

you're in my prayers, dear, i hope you get better soon, hugs to you!!!

thanks so much for the advice!! i'll sure keep that in mind.

pls update us on your progress and that things are settling well for you, hopefully. wish you much health!!

I'm still unable to have a bowel movement on my own. I spent the majority of the day yesterday in Radiology at the hospital doing the upper gi and small bowel follow through tests. My husband and I have an appointment with my surgeon tomorrow and will find out the results of the tests. I don't think that I've ever been this nervous before.

Hodaya, I think that what we're all going through is very personnal and is extremely easy to become emotional about. I have been seeing a counselor throughout my entire constipation saga, and he has helped me so much. I really don't think that I would have had the strength or courage to make it this far without his help. I think that you are normal to show emotion during this difficult time for you, and I hope that your doctors help you soon!

Lizzie, I wish that I could reach out and give you a hug. You've came through so much and are always right here helping others.. I can't say thank you enough!


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colectomy August 2007