Got My Port A Cafe In Today And The Pain I Wasn't Looking Forward To Sucks!!!!!!!!

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onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/2/2009 12:13 AM (GMT -7)   
So i had my appointment today to get my port a cafe put in at 9:00am the OR was running behind so i didn't get to the OR till 2:30 i think so i had a lot of time to think about it i don't know why they book you so early when they know we only have one surgeon and emergencies happen everyday and they come first of course,finally the DOC comes over and wheels me into the OR the excitement was to much i could barely contain myself (NOT) i had the same antheseologist i had for all my surgeries and i was going in there to get a new line and they couldn't even find a vein to start the IV to knock me out so 6 tries in one arm and 4 in the other and i usually fit going to sleep cause i'm always scared that i'm never gonna wake up my mother did that to me scared me,so i wake up in recovery and my chest hurts so bad so they gave me something for the pain i got long curly blond hair which they ever so nicely taped in my dressing. I got released around 6:00pm and i'm having a real hard time with the pain my central was nothing like this Dr.Cole said there getting me ready to hook me up to TPN after scope the end of the month wasn't looking forward to that response anyway i got home drank to no end and i can't eat i can't swallow every thing is sticking in my throat and for once i'm hungry i don't know if i should let the surgeon no or if its just from breathing tube I'll wait till tomorrow.I also wanted to thank Navy for all the help the advise and support before my procedure,still in pain and can't sleep its almost morning now but i'm gonna try to get a little rest take a few more pain pills maybe that will help i don't like taking any thing new cause it makes me groggy and nauseous and i already take morphine but he gave me demerol to and they make me so sick to my stomach. Sorry for the long post had to VENT to someone thanks for listening guys i hope you all are well. Jenn cry cry cry
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 5/2/2009 7:29 AM (GMT -7)   
Jenn, if you are still needing the morphine and demerol why not call your doctor and request a script for some phenergan or other anti-nausea med be called or FAXed to your pharmacy? I so dread nausea and have so little tolerance for it. You have my sincerest and deepest sympathy! ((((hugs)))
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/2/2009 11:42 AM (GMT -7)   

Hi Crohnie thanks for your reply i take gravol on a daily basis but it don't help i have tried other anti-nauseas but had a bad reaction to them one made my eyes roll back in my head and it took forever to reverse it scared me half to death,i will ask my doctor about the one you mentioned maybe it will help cause there is nothing worse than being in pain and sick to your stomach it sucks but it could always be worse.Last night i had a rough night didn't get a lot of sleep cause it hurt to bad today its even worse i find the second day worse than the day of surgery anyways they don't count the day of the surgery anyway but it will get better i know in a few days i will be back to myself and my IV schedule thank god. Jenn cry cry cry


Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 5/2/2009 11:54 AM (GMT -7)   
Oh, Jenn, I am hurting for you! I know what you feel when you say you are "afraid you might never wake up" if they put you under. I've had 22 leg surgies & each one has made me more afraid of "going under". I fight it too. With such advances in medical technology you'd think they would come up with microsurgeries combining acupuncture (or something!) that would leave you with "no pain" & "no scars".... Healing thoughts are on their way to you. Get well soon. This forum needs you! Hugs.
 
19 yr old Grandson - Dx UC 12/08;  DX CD 4/09
Dec 19/08 - Hospitalized (1st time)
Apr 9/09   - Hospitalized (2nd time) CD flare
Current Meds in Hospital: Humira injections started Apr 24/09;  Oxycodone 15mg
 
Is still in hospital 
 
Previous Meds:  Prednisone 40 mg.
Asacol 800 & Morphine (allergy to both).
Hospital Suppliments:  boost, low fiber diet.
 
 


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/2/2009 12:48 PM (GMT -7)   
Hi nana if you don't stop worrying about everyone your going to end up with a bleeding ulcer your self and you don't want that do you? So you are no stranger to hospitals either you went through a lot yourself didn't you,and did i read in the other site that you were from BC i'm in Nova Scotia small world isn't it? You take care of yourself nana please your grandson needs you now? Talk to ya soon nana!! Your Friend Jenn smilewinkgrin smilewinkgrin smilewinkgrin
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 5/2/2009 1:53 PM (GMT -7)   
Jenn...just wanted to let you know that I was thinking of you....I have read many of your posts and see that you have been through a great deal...I hope you have a good support system at home...you certainly are a great support to everyone here! I hope you feel well soon...take care...debbie
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 800mg xifaxin, 6mg entocort, Humira (started 3/23/09), synthroid, aciphex
 


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/2/2009 5:00 PM (GMT -7)   
goldy3 said...
Jenn...just wanted to let you know that I was thinking of you....I have read many of your posts and see that you have been through a great deal...I hope you have a good support system at home...you certainly are a great support to everyone here! I hope you feel well soon...take care...debbie

Hi Goldy thank you for thinking of me that means a lot to me.I've been sick a long time now my Crohn's has never been able to be controlled by MEDS so there was a lot of surgery fistula's abscess fissures all rectal and that is a surgery i think i hated the most cause you don't think you use any muscles in your bum till you have it operated on than there is the dealing of the packing and the first dreaded bowel movement,but know i just started on Humira 3 months now but its not working wonders by all means yet anyways.I have tried a few other TNF-Drugs but had no success my body seems to reject everything i put in it or i'm allergic to them one of the two, I developed erythema nodosum from the Remicade so i didn't have much luck. Thanks for your Response Jenn smilewinkgrin

Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 5/4/2009 10:12 AM (GMT -7)   
Jenn: how are you doing today? Your suffering seems to stick with my mind.... sending more prayers your way!

Back in the 1960's my mom had a couple feet of her bowels remove & back then the postsurgery treatment was to have sits baths & use a glass tearshaped object rammed up your rectum to stretch the anus (sorry to be so descriptive!). She used to pass out, literally fall off the toilet, from the horrendous pain. When I read the description of your rectal pain, it brought back memories of my mom's suffering. It's difficult when you body rejects or builds up immunities to (or you are allergic to!) medications & foods. My g'son appears to be heading down that road as well.

Erythema nodosum sounds far more severe than any "shingles" episodes I have had. Does it come & go Jenn or are the lessions always there. As if you needed more complications, hey!

There is so much I don't understand about CD & UC. Like why can't it just be treated with antibiotics to stop the inflammation & swelling.... why do the pharmasuitical companies get away with marketing drugs that have such severe side effects? Some of those side effects are MORE aft to kill a person that the diseases they are supposted to be treating!
 
19 yr old Grandson - Dx UC 12/08;  DX CD 04/09
Dec 19/08 Hospitalized (1st time)
Apr 9/09 Hospitalized (2nd time, still there) CD flare
Hospital meds: Humira injections started Apr 24/09;  hydromorphone for pain; diuretics; prednisone 50mg.
Has been on: Hydrocortisone, Prednisone, oxycodone,
Demerol, Asacol 800 & Morphine (allergy to both), cipro, flaggyl, vincomycin.  Suppliments:  potassium, multi vitamin, boost, low fiber diet.
 
 


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/4/2009 5:20 PM (GMT -7)   
WorrywartNana said...
Jenn: how are you doing today? Your suffering seems to stick with my mind.... sending more prayers your way!

Back in the 1960's my mom had a couple feet of her bowels remove & back then the postsurgery treatment was to have sits baths & use a glass tearshaped object rammed up your rectum to stretch the anus (sorry to be so descriptive!). She used to pass out, literally fall off the toilet, from the horrendous pain. When I read the description of your rectal pain, it brought back memories of my mom's suffering. It's difficult when you body rejects or builds up immunities to (or you are allergic to!) medications & foods. My g'son appears to be heading down that road as well.

Erythema nodosum sounds far more severe than any "shingles" episodes I have had. Does it come & go Jenn or are the lessions always there. As if you needed more complications, hey!

There is so much I don't understand about CD & UC. Like why can't it just be treated with antibiotics to stop the inflammation & swelling.... why do the pharmasuitical companies get away with marketing drugs that have such severe side effects? Some of those side effects are MORE aft to kill a person that the diseases they are supposted to be treating!

Hi Nana seems we were thinking the same i was just checking on you and your grandson,small world you still have shingles i wouldn't wish that upon anyone i heard how painful it is with me i was in a double blind study so they didn't know if it was from the remicade or the placebo (sorry they knew it was from the remicade but had to contact the drug company to be sure) it turned out to be a severe allergic reaction which caused the erythema nodosum they were large painful patches red like welts that all formed on my legs it went away after stopping the remicade thank god. Nana you mentioned your mom having bowel surgery did she maybe have Crohns disease? Keep me posted nana and tell your grandson we are all thinking of him sending him warm thoughts. Jenn smilewinkgrin

Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/4/2009 7:24 PM (GMT -7)   
Jenn,
Unfortumately E.N. happens with crohnies, sometimes no matter the med. How are you feeling today? If I understood you right yes you did have a tube down your throat, usually it takes me about a week or two to not feel like I have a sore throat (I have a tendency to fight it). The first couple of days afterward do not have anything solid in your throat. Stick with stuff like jello and soups.
TC,
Navy
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/4/2009 7:55 PM (GMT -7)   
cry  Hi Navy things are looking up now i guess the last few days were not the greatest how ever i did find out what this one is called and it is (Port A Cath) did you ever have one of those went to see the surgeon today and he says it looks good but it still hurts not as bad but now all the bruising is popping to the surface but I do have a question there is 2 different sites why doctor was to busy to explain to me i was also given a port adaptor were does it go in which site i got one hole on the right by the collar-bone and the other one down about a half an inch in the top of my breast a tender spot,he doesn't want to excess it until Friday so i got a day bed booked in Medical Day Unit for my Iron Infusions and I can't wait I'm so drug out all i do is  lay on the couch get up do dishes tidy up make beds and than I'm exhausted for the rest of the day and some times nap 2 or even 3 times a day,so I'm happy i got my new line its going to take some getting used to it its nothing like the Central line that I'm used to having. Thanks again Navy for all the advise and support I really appreciated. I'll let you know on Friday how i did for the first time I'm a little nervous always wanting to protect that area you know. Jenn cool
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/5/2009 11:22 AM (GMT -7)   
It will be sore for about a couple weeks, if you have the one that looks like about a 1 inch (maybe a little bit bigger) disk under the skin. Do you mean two incisions? It could be they needed the other one for proper placement. It helps to wear button down shirts the day that you have the infusion. Hope this helps you feel better.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/5/2009 2:39 PM (GMT -7)   
Hi Navy your right there is 2 incisions about an inch or longer and that 1 the button your talking about but i don't get what the other hole is for yet you say its an access hole for what to guild the line through to the other port i'm really not used to this yet at all i go Friday as i was saying for my infusions is it going to hurt all over again when they put in the adapter or will it just hurt a minute or so thanks again Navy. Jenn

Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 266
   Posted 5/5/2009 3:18 PM (GMT -7)   
Jenn: I do not understand everything you wrote here.  But it seems to me you have gone through a lot.  I haven't had a surgery yet (except extracting a wisdom tooth years ago).  But I know it must be painful of what you went through.  Today I went to my dentist to have my teeth cleaned, which was painful to me.  I do hope you are getting better.

Diagnosed with CD in 1994;

In 1994 I was treated with Pentasa of no avail.  Have being treated with Chinese herbal medicines for over 10 years.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/5/2009 4:22 PM (GMT -7)   
One slice to stick the disk in and the other one is to visualize where it goes. Otherwise it is like sticking a pin into an envelope without looking.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 5/5/2009 4:30 PM (GMT -7)   
Hope you recover soon .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/5/2009 6:19 PM (GMT -7)   
EruditePaul said...
Jenn: I do not understand everything you wrote here.  But it seems to me you have gone through a lot.  I haven't had a surgery yet (except extracting a wisdom tooth years ago).  But I know it must be painful of what you went through.  Today I went to my dentist to have my teeth cleaned, which was painful to me.  I do hope you are getting better.

Hi Paul its not as bad as it seems to be I'm just getting use to this new port I usually had a Central Line all my adult life but they don't hold up as long as the Port A Cath does and it doesn't need flushing everyday like the Central Line did (The central always became blocked and i required a new one a lot this new one will last about 2 years according to the doctor i hope i get longer but 2 years is better than now at all,I get these lines put in cause i require a lot of IV fluids and Iron Infusions IV Antibiotics and magnesium,potassium and frequent blood transfusions.By the way I'm trerrified of the dentist i have TMJ and my jaw is srinking and i dread the days  that i have to go for another tooth abstraction cause there isn't enough room in my mouth with the jaw srinking i lost most of my back teeth now but the pain isn't as bad now with them gone. Thanks Jenn skull
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/5/2009 6:24 PM (GMT -7)   
MMMNAVY said...
One slice to stick the disk in and the other one is to visualize where it goes. Otherwise it is like sticking a pin into an envelope without looking.

Hi Navy well that makes a lot of sense now i feel so stupid but really the surgeon i have is so over booked he doesn't have the time for small talk even after your surgery most will come in the recovery room and let you know how things went i never seen him once after any surgery however he does stop in to check on me a few days later to make sure there is no infection which i can pretty much predict myself but i do love him he did almost all my surgeries so we are really tight. Thanks again Jenn smilewinkgrin
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.

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