TOTAL COLECTOMY PART 32

lasbutterfly
  Oh I hope not for me....I have a internal J pouch I think that is what he said, so I dont know if that makes a difference or not.  Usually bread would constiipate me some but I eat at least 3 pieces of bread a day.

My problem was not really constipation before the surgery, mine was I had illisus, gas that would keep my bowels from moving.  Once the gas was gone everything would move and it would all be soft never hard stools.

I notice post surgery I get a lot of gas right under my breast bone, but it always passes.  Guess we really are all different but the suffering is something we all have in common...what luck hugh?

Thanks for telling me that because I have had more than 3 docs that told me I wont get constipated...

Leslie

Hey Ladies,

There is so much going on I can hardly keep up. I think I am going to go to the doctor now that I still am having issues this late in the week. I can not move my joints for most of the day even with my fentanyl, norco, and valium. It starts in my fingertips and its in my shoulders, knees, hips, shins, ankles and toes. I am not sure what is going on. I do think I should get some labs drawn as I have been tachy this last night and on/ff fever like symptoms and peeing maybe once or if lucky twice a day and for one, i think becuase of the narc I can not get started very well and when I do pee its very little. Being a nurse it does not appear dark or dehydrated looking, but I feel like I have something going on and its settling in my joints. Maybe its just a virus? I have still been eating, just not as much....I was doing better and now its about 600 cal a day this last couple days. I lost a couple lbs this week which i did not need and was 96 lbs last time I checked. My pouch is still working great. I do have to irrigate it a lot to help aid the starting of the stool, but thats no biggie. My stoma is SO small......I wish all of you could see what it looks like in comparison to my ileo one. Its just flush with my skin and my 30 frech cath, its just a little bigger than that. I can wear a med sized bandaid over it and that it...it incredible. I am worried of these new symptoms and swollen joints, increased whole body pain, and weakness, but I DO NOT want to be in the hospital again so I have avoided the doctor all week. I guess I should check my lytes, liver enzymes, and kindey function panel just to make sure. Rosemary I have not been drinking enough and this kpoch works just like an ileo in where i believe you get dehydrated quickly. I just do not want another issue.....I am so tired of all of this and esp after all of my complications I am still dealing with from this last surgery. Anyway enough about me.

Christy- Good to hear from you sweetie....I have missed you. Thanks for checking up on me....yes, this was a big big surgery and its been the hardest by far. So are you not going? I am so worried if that is the case. I know its us with issues that post, but it seems there have been so many of us resorting back to laxatives and strict eating restrictions just to feel comfortable. I wonder how many of us had these outlet issues before out original surgeries or how they develop because I had every test imaginable before mine. If I am wrong and your going then SO happy for you and glad your back posting. (Just saw your going back to Birmingham....So happy and praying for some answers sweetie. Cleveland is 10 hrs round trip for me too....but you and me both know its what we have to do when it gets this bad)

Leslie- I am glad your going twice a day, but never let a doctor tell you constipation is not an issue that can develop after this surgery as many of us have unfortunately suffered for many more months with constipation and issues that led us to more surgery (but if you read my signature I am a rare case) but there are many of the girls on laxatives just to keep them going. I am so happy this is not an issue for you and I pray this never becomes an issue.....EVER!

Hodaya- I am still very concerned for you even though you are having some relief from this new pear juice, but I just fear you are lacking so much nutrition and I am worried like so many other things you have tried it could stop working eventually.....i pray it does not. I still think you should have the defecography. It was not useless for me to repeat the testing and I did twice after my original surgery with added testing and it showed much information as to how I had regressed since surgery so please do not cancel the test. I know a bag as an option scares you, but you still do not have quality of life that you deserve and anismus or rectal ineria for me was treated and cured with this last surgery (kpouch)as well as my ileostomy. I have so much quality compared to what I had when I was feelling like you and believe me it just gets harder and harder. I think you need another opinion as well.....so worried about you.

Rottiemom- As big of a surgery as I knew it was I never questioned it because I could no longer live the life I was living. It is a scary decision for many/all of us and a lot of us kept questioning our decision even after the surgery date was set. I think each of us has dealt with it differently, but for the most part I think when surgery became a topis of discussion we were all or most to the point where we could not live like this ever and knew we needed to take the next step as scary as it seemed. we are all here for your support with whatever you decide, but as many issues as I have, which are endless, I never have regret having my initial total colectomy. It may have only helped me for 3 months, and three surgeries later and many complications, pain, fear, frustrations, loss of quality of life, and doing whatI had to to live I have never regretted the surgery becuase it was the first step I needed in my recovery.

There are so many more to respond to, but I have to empty my pouch.....love you all. Miss you Rosemary!!!!! Judy, Jen, Amy, and many more.

Lizzie

Lizzie, are you still taking pain meds? the fact that you still have pain as intense as needing narcotics worries me. what did the drs in the pain clinic say about this? anyway, don't delay going to the dr no more, your new simptoms are worrying me. thanks for your response. i have an appt to see one of the senior gastros that has been involved with my case. he's considered one of the best in israel. the appt is April 6. i want to ask him to also do me the scope to check the anatomosis. the CC dr sais he don't think there's a narrowing, but i want to make sure just for my own peace of mind and i guess i won't relax till i also do the defecography too. do you think i should do a ct scan to see if maybe there are kinks in my small bowel? or maybe i'm exaggerating? pls go to the dr and let us know what he sais. love you!

Table 1. Antimicrobials Associated with Peripheral Neuropathy



• Chloramphenicol

• Chloroquine

• Clioquinol

• Dapsone

• Ethambutol

• Fluoroquinolones

• Griseofulvin

• Isoniazid

• Linezolid

• Mefloquine

• Metronidazole

• Nitrofurantoin

• Podophyllin resin

• Suramin

Clinical manifestations

Symptoms are generally sensory more than motor, and are similar to those typical of other toxic neuropathies or other causes of distal symmetric polyneuropathy, and include distal paresthesias, often with burning, dysesthetic, and stocking-glove sensory loss. Both small and large fiber modalities may be involved, the latter reflected in distally diminished or absent tendon reflexes. Motor nerve involvement, if present at all, is typically less pronounced and occurs later, and is reflected in distal atrophy and weakness. Dapsone and nitrofurantoin, however, have prominent and early motor involvement (Lhermitte et al 1963; Gutmann et al 1976; Yiannikas et al 1981). Onset may be insidious, subacute, or acute, and symptoms typically progress if the antibiotic is continued. In most cases, symptoms improve or resolve after the drug is discontinued. This, as well as the temporal correlation of symptom onset and the use of the medication, serves to strengthen the causal association. In some cases, as with isoniazid, recovery can be slow and incomplete, especially after prolonged use.

Hey all,

I was wondering what all of you guys thought the worst part of the whole surgery experience was?


thanks,

Amanda

Hey everyone, been a long time since I have been on here. Been sick but dealing with it. Just done with all of this! I am just plain exhausted.

Have not been able to read up on everyone, but I know most of you are discouraged as I am. So hard to stay positive when this consumes you. My next appt. with my doctor is on the 23rd, so I guess I will see what he has to say. He thinks he could be my gall bladder acting up, but just not sure exactly.

Amanda, welcome. I saw you asked what was the worst part of surgery. I would have to say the nausea and the pain. I threw up a lot and that is so painful when you have such a large incision. It was definetly the hardest trial I have ever had in my life. What surgery are you thinking of having? I had a total colectomy.

Two more weeks and my brothers murderer will be free. I have been having anxiety attacks daily just thinking about this. My pastor is trying to help me through it, but its just so hard. Its only been five years and I cant help but think of the way he died every day. I know this guy will be coming back to my home town so that just makes it that much worse. Please say an extra prayer for me so I can forgive this man and get on with my life.

Sorry so down today!! Maybe tomorrow will be better.
Love you all my dear friends!

evans18
     OMG, I am so sorry for you and believe me when I say I know your pain all to well.  What happend to your brother and when if you dont mind me asking.

The reason I made the first statement is because my son was taking from me.  It was a drunk, high on pot, and meth and had not slept in days.  My son was getting off of work he was a cook at the Famous Wildlife Safari in Winstion Oregon, he was hot and his friend suggested that they go swimming.  Well my sons friend was going to be late and told my son Lucas to ride with another guy that was leaving earlier.  So my son got in the back seat of the car with this other guy and had no idea that the driver and his girlfriend were doing drugs.

This man was behind a chip truck that he could not see around on a two way rd, and he wanted to turn left but he could not see and did it any ways and was t-boned on the left side right where my son was sitting.  Poo, now I am crying cuz I had not told this story in years as he was killed June 27, 2000 at the tender age of 18, and he was the only one to die in this accident.

The driver was not charged right away and fled to Oklahoma and the police were not doing much to find him and I was outraged.  So I did my own investigation work, and found out what state he was in and I asked for them to find him and extridite him back to Oregon.

We went to trial and he got 8 years and was out in 6....that made me angry it was way too short of a time for what this guy did.  Plus, I forgot to say that this guy was a habitual offender and when they found him in OKlaholma, the cops had pulled him over for another drunk driving.....thats how they got him

I know its hard and you never get over it but I had to forgive him to get peace in my life.  Still I dont know if I have truly forgiven him deep down.  Its a hard road to hoe and my thoughts and prayers are with you.

So sorry

Leslie

Lizzie,

Get a SED rate blood test to check for inflammation.

Also does some of this medicine dehydrate you?

Yesterday we were in our last port at St. Thomas, US Virgin Islands.  I was drinking LOTS of water as usual.  It was hot, sunny, and dry, no humidity.  Moderate walking, but not strenuous.  I began to feel light headed then I saw stars.  Poured water over my head and sat in front of a fan in a restaurant and ate.  Felt better, but then said to my friend I was going back to the ship to take a rest on my bed with AC cranked up cold.

I just made it to the ship which is kept really cold and I PASSED OUT COLD.  Blood tests showed I was severely dehydrated though I'd drunk 1.5 Liters of water.  So they gave me 2 liters of IV saline fluid and I started peeing again and felt better.  Today I feel a bit draggy but we're on ship all day.  Am drinking and peeing but not as much as what I am putting in.  But have peed about 5 times today and it is not dark, just not a ton like after the two IV's nor like it was in the GOOD OLD DAYS when I had use of my colon.

My ileo output is not excessive.

If anyone figures out how to pee a normal amount without the use of a colon please let me know. 

Do you all who don't have colons pee out 2 quarts of pee per day?  That is what we are supposed to do.  I've not been able to do that this whole trip.  Hope I stay OK, only 2 more days to go and I'll be home.  Has been great but we are all ready to go home.

Good luck Lizzie.  Am glad the pouch is working, but MY GOODNESS!  We gotta get the rest of you going too.  Hopefully Mother Hen will be back to mothering you all real soon.

Rosemary

Leslie, thank you so much for you story. It really helps to know that there are people out there going through the exact same thing that I am. My brother was murdered in 2005. He was arguing with his roomates who were pretty much mooching off of him. One of them pushed him and he hit is head on the entertainment center. When he came to after being knocked out this guy proceeded to jump on top of him and strangle him twice. Both roomates then moved his body into the laundry room where they left him for four days. Then they put him in the back of his own truck and left him for another few days. After that they drove just barely past the Oregon border where they dug a shallow grave and placed him there. He was there for a week before his body was recovered. Due to the condition that his body was in no family members looked at him. So I have so much anger in me because I was not able to see him before his funeral. And the fact of the sentences that they were given are just not enough. When you have a close family member die in such a senseless way it is so hard to forgive those who did it. But I know I have to if I want to be happy again. Thank you for sharing your story. It meant so much to me.

Val and Rottie Mom thanks for your thoughts and prayers also. I am doing better and this moment, but it changes from minute to minute. Church definetly helps, I dont know what I would do without having some hope that these two men will one day have a very big debt to pay.

I know I am going to have to be really strong these next two weeks as the 25th gets closer. I will be in Salt Lake City that weekend with my friends having a good time, so that will be good to keep my mind of what is happening.

Leslie, I was also going to ask you, did you ever talk to the person who took your sons life? Do you think that would help? And also I never looked at any of the crime scene photos. Do you think that would give me some closure or just make things worse?

Thankyou all for your everlasting love and support!

Marisa,

     Thanks so much for sharing your story.  It just made me cry to hear how your brother was treated and moved from one place to another and then burried.  My heart just breaks for you and your family and what you have had to endure.  Those men are not human they are monsters and deserve nothing but suffering or death.  I always feel that people like that should not get the easy way out by death, they need to suffer for all the pain and agony and loss that you all have had to go through.

I got the call about my son being taken to the hospital when I was at work.  By the time I got to the hospital my x husband had already taken him off of life support.  My x's mom was a nurse and the docs had told him and her that Lucas was brain dead and they took him right off support.   I was so angry with them, it had only been a hour and who makes a life decision like that so fast and I was never even consulted about it.

So I went in the room where Lucas was in intensive care and his heart was still beating and the only thing I saw was a small scratch on his head, so it was hard to believe that my baby was gone.  I guess your heart can still beat for a hour or so after being taken off.

But he had so many internal injuries besides being brain dead and they could not stop the bleeding..

To answer your question about talking to the guy who did all this...well he had been released from Prison and 6 months later I walked in to a store and he was working.  So I said hi are you danial and he said yes why who are you...so I told him, and he had the nerver to say to me...you know putting me in prison was not going to bring your son back so all you did was take me away from my new born son.

I said I see that your well and I hope you continue to do well but I have got to leave cuz I was ready to smack him...never saw him again...he still lives in Roseburg though..

I did go to the scene of the accident and we put up a huge cross with his name on it and we go all the time to put balloons and flowers, but it really does tug at your heart to go there..

That was so mean what he said to me that is when I thought I dont think I can forgive him truly...

My thoughts and prayers are with you...

Leslie

Lizzie,

sweats and other feeling disturbances can all come along with peripheral and/or autonomic neuropathy which may also be caused by a lack of vitamine B12 that is mainly build in your terminal ileum. You may have a lack of vitamine B12 since you have an internal pouch which may cause more metabolic disturbances than a normal ileostomy.
My joint pain I have never known before, too, was definitely caused by an antibiotic induced neuropathy.

Please ask your doc directly since many docs do not think about the side effects of the prescribed drugs.

I also expereinced night sweats and severe fatigue with my hickman catheter infection. Please, check your blood for possible infections. The usual markers for the presence of inflammation/infection may not be sufficient as it was in my case. These values were completely normal but as blood cultures were done the infection showed up.
Infections after surgeries can also be caused by antibiotics that are given during/after surgery. I had a c-difficile infection after one of my surgeries.
Night sweats are usually a sign for a stimulated or an overacting immune-system.

Post Edited (pelztier86) : 3/15/2010 10:07:00 AM (GMT-6)

Lizzie,   We love you and appreciate all your support and prayers.  The loss of someone one you love is hard, and when you lose a son or brother the pain is excruciating because you expect them to be around for a long time.  Unlike your parents passing which is expected at some point in life as part of the natural progression of life.

But Lizzie dear I do think that your thought is right, you need to go to the ER and get  some immediate results.  I do pray for you to have that moment that we all wait for when we just feel good...so keep up up-dated on your health as we continue to pray for you.

I went to my neurologist today because he had done prior EEG's  2 separate one and did not like what he saw on the scan.  He thought at first I may have Eplispy but now he is sure I dont.  My test showed cognative impairment, in my frontal lobe.  So he ordered 10 different blood work ups to find out what is going on...so just another struggle but one that does not affect my feeling good.  I do feel great except for the surgical stuff, so, so far so good with this colectomy...

Take care and love and many, many prayers for all of you.

Leslie

Lizzie,  so sorry to hear that but I am glad you decided to go to the ER....praying that your ok...keep us posted when you get home and are able..

Leslie