Been Way to long since i updated ( long update

hi there , it has been way to long since i last wrote ,and much has gone on since then and is about to this week as well .



I saw my surgeon finally in Feb and when he saw the colostomy and how large it had gotten he said let's fix it to where i told him YES !!! ,so before i had left his office he showed me exactly what he would be doing , for the first surgery , which was to reconnect my large colon to the rectum (he had to take a section of the colon near the rectum out as that was where the stool had blocked , and he also had to reconnect the large colon where he made the ostomy .I was told all the possible risks for the surgery and then the date was set for Mar 19 , before i left the city i had an appt with the anesthesiologist for a week before the surgery , i also had blood work done after i left the surgeon's office , things moved fast that day,the surgeon also told me before leaving his office i would have a temp ileo for 3 months .



. I went to see the anesthesiologist and he told me I would be having a spinal epidural which terrified me but it turned out the one who told me all the possible side effects and risks (those of what i could understand as the man talked so fast I could barely understand him ) was not the one doing it which was nice because the one i had was very nice and explained everything to me .


The surgery went well , i spent 6 days in the ICU because the surgeon used a new thing for lack of a better word on my wound called a vac which sucked out all the fluids and any infection that might start . I have to say i am glad he did use it as i am sure that is what made the world of difference with the recovery .On day six he took this vac off me and after that i was up waked to the washroom for the first time in those six days (had to have a catheter in ) and had the nurse help wash my hair . Sadly in the afternoon that was when things changed as i was transferred to another floor one i told the nurses was my own personal Hell (sorry for the word but best way to descibe it ) you see i worked the floor they took me to and for the love of me i can't figure out why they would transfer a surgical patient to a chronic floor .



When the nurses took me to the floor they felt bad for me because that floor is about 100 degrees (i know because we put a thermometer in one of the rooms in the spring one time and 105 in the hall and 110 in the tub room ) my room as I was wheeled in you could feel the heat , and the paint was falling off the wall in one spot , one of the nurses took some flowers i had been given and put them in the window and as she was doing this she said well you have a window with a then she goes view of the roof , they put on the window a teddy bear my granddaughter had gotten me but it didn't do much to cheer me up , but i said thank you as the ICU nurese were super ladies .


This room as i said was very hot , so they had opened the window a crack to let some air in , which was not bad till thru the night where i thought for sure i would end up with pneumonia and be stuck there even longer , and if i had asked them to close the window i would have cooked with the heat , so i laid in my bed with a blanket up near my head to try and keep the little bit of a breeze off my head


A few mins after the two nurses left me there one from the floor came in to take my info down , after doing that she looked at me and asked do you know how to care for this appliance ,I told her yes this was not my first one after that the only time i saw the nurses on that floor was to give me my meds and for my meal try .


After the nurse who took my info left they brought in my room mate and that was when little did i realize that room really was my own personal H :( . You see this lady and please don't get me wrong i am a big lady and my mother in law is an even bigger lady so i have nothing about large people but to get a good picture of what was to come later it is the only way , this lady was at least 400 pounds , and about 9 pm was when i was about to learn how bad my night was to get , you see this lady needed a cpac mask for sleeping and i never realized till that night how noisy they are but thought okay i can deal with this not so because even though i am told you are not suppose to snore well not so with this lady i swear on a stack of bibles (now that i am home i can laugh about this next description not at her but at what i went thru ) that she snored three different types of train sounds if that is possible , then at one point I thought i heard some one closing up the laundry bags and dragging them to the laundry shute and as i used to work that floor i knew the sounds well , it turned out it was this lady , on top of that she passed gas thru out the night . I tried hiding in the bathroom to drown out her noises as the bathroom wall was a heavy brick and the door a heavy metal but to no avail the noises came right thru , well i thought okay i know they have a tv room maybe i can go there and sleep wouldn't work because across the hall from where i was , there was an elderly man yelling let me out i gotta get out of here so they took him to that room , so i spent my night in tears , and by moring i had not slept in 24 hrs .


When my morning nurse came in all smiles and said good morning man did she get it , but i found out by the look on her face she wouldn't listen as this lady was one of their patients who had just had her leg amputated and been brought back so they really loved this lady and she could do no wrong , in my way of thinking she should have been in a room herself .


The next person who came in and said good morning to me was my surgeon and he got it real good , and he is a hard one to be cross with as he has such great bedside manner as well as a smile that would melt the devils heart if he had one , so i told him what had happened and I had not been to sleep in 24 hrs and if you are to heal you need SLEEP !! so i told him LET ME OUT !! , he smiled and said i think we were down this road last year and i told him yes but for different reason,so again he smiles and says yes you can go home , i looked at him and said don't fool with me today and he smiles again and said yes i could go home but first he had to go and would be back in a half hr to take out the rod in the stoma and give me my rules , I said fine then when he left i rushed (well a turtle would have beaten me probably lol ) down to the nurses station to call my husband and tell him when he got off to work to come straight to the hospital so he could SPRING ME lol ;) .then i spent the rest of the day waiting and man what a long day .


Well i came home and as i told him i healed up much better , by week three at home i was back in my flower beds getting them ready for the summer (and adding some more grey hairs to both my husband and family doc ) I followed the rules no lifting or bending what would usually take me 2 maybe 3 days at the most took me 3 weeks because i was on hands and knees but to be honest i feel even better when i am out side , I was back up to walking 3 miles each day as well . After i got them all done i had to promise my husband /son's /granddaughters/ family doc /ET nurse and even the Coloplast rep i am paired with for the year should i need support and thank goodness i was paired with this lady as she has went over and above what i think she was suppose to do even now with my up coming surgery she calls each week to see how i am doing and to keep my spirits up should i start to get the case of nerves .


I had to have a gastrografin enema which i was not looking forward to because of the last two enemas i had given to me at the hospital (now they think they may had had a good part in my perforated bowel as there was no hole when they took the first x-ray , but i did have the test or this surgery i am going for would not happen as the surgeon needed it to see if the colon had healed and from what my family doc told me the x-ray came back excellent as though nothing had happend :) .


So as of tomorrow it will be 5 days and counting and i go back to the hospital to have the small intestine put back in again and as i have called myself lately (not sure why ) have Humpty Dumpty put back together again .


The surgeon has told me though this time I have to stay in the hospital till he says it is fine to go , i have to be able to walk (can't see a problem there as i was up the day after when i had the first one done ) i have to keep solid foods down / have to have my bowels moving / and even more important there is no leaks , i asked him how i would tell if there was seeing as how last year other then pain going out the roof for me i was not sick / no fever , this is when he said you have to stay till we are sure . I am not arguing with him this time , but i have made sure i have some things with me one and most importantly is I bought an MP3 player and loaded some cds on it , there is an FM radio and a good set of headphones to drown out back ground noises at night especially if i should get a room mate from H again , as well our granddaughter's Big Sister (from Big Brothers/Sisters ) has a small library of books so is bringing in a small box for me so i have something to read , and i am taking my journal in and with luck finish it up as i have been writing about my nightmare year , so hopefully all of that will keep my mind off of not being at home especially at night (my age you would think you would not get home sick but having not been away from home in 34 years i do ) . I figure with the stress our daughter has been causing , while at the hospital i can turn that part off , as i won't have a phone , and no internet as I won't take my tablet so i can't see her whining or wishing me ill of health , and if i am at home if i even begin to feel a tiny bit good i am one who will say i will just try to do something so this way i have to behave myself as my guys have been telling me already :)


This week luckily the surgery is not till the 25 so it means that my husband and i can go and watch our granddaughter graduate from grade 8 , and because of that i have not told her yet of the date as i didn't want to spoil her special day , seeing as how although i had not planned it I did spoil her 13th bday , on the 24 th i am going to send her a text that we need to talk and i will tell her about the surgery , then that is all i have to do i think before i go in . the only other thing is i have to call the hospital on the 24 th to find out the time to be at the hospital the next day and as the anesthesoloigist told me my surgery is the first one booked i would say it is going to be another early trip to the city . thats okay as much as i am terrified again i want this over with and to get back to my life again , because with this ostomy I have spent the last 3 months about 90 % of each day in the bathoom emptying this bag so i look forward to my old way of life again :)



Well i guess i have written a mini novel but I wanted to let you all know how things are going , it has been a busy three months .I go into this surgery although terrified i am going in with the same attitude as the one in Mar and that is positive :)



Take care


Kakie56

Hello Kakie56. Thank you for sharing your this part of your journal which I enjoyed reading. the account of the lady with the CPAP machine made me smile as it's the type of thing my wife says about my machine. Fortunately, with the cpap I no longer snore but every now and then the mask comes loose and the hissing sound bursts out like those air brakes on huge lorries. not something she or I want to be woken up by in the middle of the night.Stay positive and keep writing!Best wishesBill

Thanks Bill for the good wishes , I admit to being scared but also i have a positive attitude as well,I figure that the risk of a leak was higher with the first surgery so i am hoping that i do as well with this one , but i am not going to push to come home early this time i am going to take the time to rest and make sure things are right as i don't want to have another ileostomy again .This one has drained my energy .As soon as i am up and running again I will be back on again :) .Thank you again for the well wishes they are much appreciated :)Take care Cathy

Hiya Cathy, I hope it goes well for You and Your life improves.steve

Hi Everyone Once again been a long time since I have posted but a fair bit has gone on since Mar. I had a temp ileo put in to let my large colon heal , well although the new stoma was much smaller , it caused more problems , it seems that me and having a stoma really were not a good match as I reacted to everything that they put on me as well as the things like paste/powder the works . With the ileo I ran into problems with leakage , I had major problems with open areas around the stoma and I would just get them healed and a new one would start up again .About two weeks before the final surgery I found a hole starting not right beside the stoma but just off to the right on my abdomen but still underneath the appliance . When I had tried all the thing the nurse said to try should I get the raw areas around the stoma , and all of the suggestions did no good the hole was slowly getting larger so I went to the ET nurse ,she said I should have went to the surgeon but luckily it wasn't that bad and she gave me some special material they use in the ER to close wounds that bleed and it helped . So on June 25 I went into the ER was lucky no spinal epidural this time and the surgery only took 4 1/2 hrs and after I woke up from it they took me straight to my room on the surgical ward (oh yes I got lucky no room mate on a cpac mask this time ;) . After the first day there they took the catheter out and I was able to get up to the bathroom the first night with help of the nurse ( the one who made me feel so bad the first time around but this time I gave it back to him , never saw him the rest of the time I was there )I never had a bowel movement while I was there and that had me worried because the surgeon said I had to stay in till I was able to eat solids (ran into a problem one meal before I was to go on solids and thought oh great I am going to be stuck on clear fluids longer ) but we figured out what happened I couldn't handle eating jello any more and up chucked my lunch while visiting with an aunt who came to see me (she took it all in stride )and I got lucky (if you can say lucky lol ) and got to go on what our local hospital calls edible food and no more problem with keeping it down . Still though I had not gone to the bathroom but I passed gas , I told the surgeon my worries and he said not to worry I would go , The day before I was to come home my surgeon and I were talking and he mentioned how I had not bugged him to go home early , so I told him how I had promised my husband I would stay in till the surgeon said I could come home and also how I had promised him I wouldn't bug him , he looked smiled and said but that's what I like about you , you come in get done what needs to get done and then you want out lol so I told him to be prepared for the next day because I will start to bug .The next day he came in bright and early like always and with that infectious smile he has and asked how I was doing , I looked straight at him and said I couldn't stand the smell of myself and that the pain was bad , he looked and asked if I should stay longer and I just looked at him and he smiled (I think he knew my answer lol ) then he said he would look at the wound as he was afraid it might be infected , he took off the dressing and said he was going to have to open the wound and there would be a could of pinches , which there was but he still needed to reopen the wound (now I had a young student ask if she could watch and I said yes she had to learn some where she might as well start with me ) when he reopened the wound she looked and said she never even flinched and he looked at the student and said she is a very calm lady ,in the end I came home with a wound that was 6.5 cms long , 4.5 cms wide 3.5 cms deep and it was tunneling about 1.5cms toward my navel , but I came home with the surgeon's order of daily home care to change the wound .The day I came home about a two hrs after getting home and I was in pain I get a call from the home care office intake secretary to set up the visits she insisted that I should be able to go to the clinic each day to get the wound cleaned , I told her first off I had no car during the day ,and after arguing with her I had a deep wound (which she really didn't believe me , so then I told her that I was on pain meds (dilaudid ) and I wouldn't take it before leaving if I did have a car but after having one of the nurses putting their finger down in that hole I would need to take the pain med and if something happened while driving that I would send the cops to talk with the intake secretary , funny but the next thing she said well the nurse can make the decision tomorrow . the nurse who came was one I have had since this whole night mare started so he knew I was not putting anything on . He came looked at it cleaned it up made an estimate judge on when it would be healed (his date was Sept 1 ) and it was healed 3 days before the date . My bowels started to move the day after I came home from the hospital , before leaving the surgeon gave me two perscriptions one was for pain and the other was a laxative but he said not to take it till that Sunday if I hadn't gone , I have not had to take it , but it sits up on our fridge to remind me of what I have been thru and to watch what I do so I don't go thru it again (I hope ) .I have also not had to take any Imodium other then the first day and a half . I watch what I eat and very careful , I eat what helps to keep them moving as well I keep a supply of marshmallows in my purse should I get the runs but so far I haven't .I also carry what I call my emergency bag , which has an extra pair of leggings (the same as what I wear out so no one knows the difference should I have an accident ) and undies , I saw my surgeon last month for the last time (unless something happens or I have something that worries me ) he saw how the newest wound had healed up and again shakes his head in wonder , not sure what to make of me lol . He did tell me though I have a weight restriction on me and if I don't want to purposely cause a hernia then to follow thru , I asked him about doing things like yard work /working in my flowers and I told him when I am out in the flower beds (already went back to them in Sept ) that I have on the binder which I wear when I get up till bedtime (he told me I have to wear that all the time (he was about to say 24/7 but said till bedtime ) I asked him about several things that are happening but he said other then the tiredness the other has nothing to do with the surgery. I know I will be really tired but this is almost scary , then there is the lack of tears , the mouth that feels like sand paper unless I am either drinking all the time or sucking on a hard candy (well I suck on the Riccola cough drops as they seem to work better ) the shakes , the headaches , and that is to list a few . I had blood work done last week and was able to read the results on line from the lab and the only thing that came up flagged was something called RDW which has to do with I am told iron definicency and well I have not been able to have my B12 shots since May as my family doc has been off while I was in the hospital as she was hit by a car and had her pelvis broke in 6 spots , so she is just back this week part time so I can't get into see her till next Tues , the other thing was the urinalysis but again with me it is hard to say because what showed up should mean I had a bladder infection but I have no signs (at least that I know of because with the fibro it makes it hard for me to tell as I deal with pain on a daily basis . There is one strange thing and I have not said it to anyone before now , and I have checked to make sure it is not my binder making the noise but it sounds like almost like plastic crackling in the area of where the first stoma was placed . I don't say anything because I know I will be told it is in my head , so with that and I am not sure if it is possible for so many surgeries to send the fibro and the arthritis into a major flare up but I know that my left hand which I had injured years ago and had carpal tunnel because of that injury , well since this last surgery I can barely hold a paper plate or my embroidery hoop and to drive well I can use that hand for a bit and then have to rest it as the pain is too much . I don't want to say anything as I want my husband to go off for his hunting trip and a couple of weeks as he really needs to have a break , he watches me like a hawk any more and waits on me as much as I will let him so he needs to rest . I have not stopped doing what I love to do though even though I am really tired I do go out for my walks and on my good days I have even gotten to my 3 mile mark and I told my husband back in Sept I wanted to go to the local fall fair which last year we didn't get to because of all that happened , and we went to a friend's bday party , and come Dec I am going to a Christmas party (ladies only ) with a friend but told my husband I would take the cell phone and if I got to tired I would call and he could come and get me (I don't think that will happen even if I am tired I am staying ) Well that's about it for me so far , other then those as I call them glitches things are good , my bowels work like clock work 4 times every morning which Is good . Take care and I will try and write more often Cathy xx

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hello Cathy. Thanks for your post which I found really interesting reading. The 'crackling'sound you mention is not dissimilar to the sound that I hear (and sometimes feel) around my stoma especially when I massage the area in a certain direction. I have come to the conclusion that it is probably small droplets of air/gas being squeezed though the 'pipes'where there must be a restriction(in my case it's probably the hernia) The sound is a miniature version of the sounds that come from a central heating system when it has air in it! Anyway this is the explanation I give to myself for reassurance that there is nothing to worry about.. I do find that If I can come up with an explanation for stuff like this(even if it's wrong) I can relax and get on with life as if it's all part of the great scheme of things. I'm pleased that you are starting to look forward to doing the things that you enjoy as that's always a good way to distract yourself from thinking about the not so good stuff. Best wishes Bill

Hi Bill , thank you for the explanation :) .When I had both the colostomy and the ileostomy (for a bit ) I had what I called the sloshing sound quite often. I wasn't expecting this noise after having the reversal so it has me worried a bit as I have this big fear of springing a leak in a spot that has been repaired .I don't think I could go back to that again as I had so many reactions to everything and the ileostomy well it was slowly eating my skin away as they couldn't get a strong seal on it . My skin was raw to the point of bleeding around the stoma and then just before the final surgery to reverse the ileo I ran into a problem with a hole starting just to the side of the stoma but not right near it but still underneath where the appliance sat . With the colostomy it was so large that was why the surgeon here did the reversal as it could not wait for a specialist to see me (was referred to one and was refused because I was not cancer ) , when he started the reversal he told me he had to put in a temp ileo for three months till the large colon healed , but if I sprung a leak in that time he would have to put in another ileo for three months after that if It leaked again it would probably be permanent , so I now live in fear of a leak on top of that he told me I would get a hernia from these surgeries and showed me where .I asked how to prevent them , I knew he would say lose weight which I am trying desperately to do and I am on a 1200 calorie diet but getting the exercise is hard because of the weather , I will soon be stuck just doing my exercise bike and stepper for that , I wear a binder from the time I get up till the time I go to bed ,and when coughing I hold my abdomen but I have great fear of getting the hernia just from my coughing because when I get a cold (which I woke up with one this morning :( , I cough so hard I have over the years bruised my ribs I cough so hard , right now that adds to all the stress I have , so hearing that sound makes me fear of a leak :( . I don't think I can cheat death to many times Take care Cathy P.S. I should have died the surgeon said and still does not know why I didn't or wasn't extremely ill for months after last year , so you could say I am a bit on the paranoid side now for every little thing that happens with me

Hello Kakie56.Given the description of all you have been through it's little wonder that you get concerned (paranoid?) over the stuff that is now happening. You know what they say about paranoia Just because you're paranoid -- it doesn't mean that they are not out to get you. I hope things go a bit better for you in the future. Best wishes Bill

Thank you Bill ,for the good thoughts ,I go to see my family doc tomorrow , she is finally back after her accident and when I called saying how bad my cough was she has me going in to see her first thing tomorrow morning , she is extremely cautious where I am concerned not sure if it is because of what happened last year but if i get sick i only have to call and they will put me right in ,so when i see her for my cough which is really bad now , I have a lst of questions and fears written down to ask her so i forget nothing .I am hoping that some day i will get over my fears of having this happen again . I do have to ask one question you said it doesn't mean they are not out to get you , not sure what that meant .Although i do have a lot of fears and a lot of stuff going on , and it may have slowed me down i am still doing things .I had a talk with my husband today about doing some work in the yard (we have a half acre side yard ) like doing some raking , i did ask my surgeon about doing some raking and he reminded me of following his rules / no heavy lifting /no bending / and no over doing it and wearing the binder all the time he said sure as he knows for me being outside and working in our yard is where i am happiest (i am not able to get out in the winter as much ) so he said sure , my husband is worried but i told him i have a bench in the yard if i get tired and i have put a time limit on myself of 30 mins , we have gone out to a couple of things such as a fall fair we didn't go to last year , a bday party for a friend and i am now going back shopping with him each week . i still carry an emergency pack in my purse with the same outfit i wear when going out so if something should happen i can change with out any one know , i am still slow at doing things right now but i haven't stopped , i just worry more now then i ever did before but i hope some day it will stop Hearing those noises , seeing the odd streak of red in my stools and going back over what i have eaten , i then remember i take Metamucil and i also drink cranberry juice as well the last couple of days i have had cranberry sauce , I am a Type A person who likes to be on time , don't like asking for help i expect myself to be able to do the things i used to and now have to realize yes i will be able to but with some changes in how i do it so i just have to figure out how to change those ways. I am as my grandkids/son's and even husband have said to people i am a very stubborn/ strong willed / and yes bull headed person but determined so i will some day get over these fears :) Take care and again thanks for the best wishes Cathyxx

Hello kakie56.The comment/cliché about paranoia emanates from the psychiatric profession where many people are not taken seriously because they are said to have 'paranoia'. Traditionally it has been a term to describe those who are convinced that someone is 'out to get them'. However, the saying has now come into the mainstream and basically means that when a person is worried about something, their fears should not be discounted out of hand as part of a delusional reaction. There is often a good reason for people to feel 'paranoid'. That gut feeling that something is wrong is nature's way of alerting the individual to potential danger so that they can do something about it before it gets out of hand.I hope this makes the comment a bit clearer even though the explanation for clichés is sometimes too complex and long-winded to be very helpful. It sounds as if you have lots of other things going on in your life and that can be good as a distraction from focussing on the negatives involved in day to day living. There are some very good psychological 'techniques' for managing worry such as 'mindfulness', meditation, writing, etc. It seems that you enjoy expressing yourself in the written form and have a talent for doing so. It might be useful to put your story into a book, a screenplay or a diary so that others can appreciate what it is like to cope with these sorts of difficulties. Writing about the things you are familiar with is an excellent way of taking care of and managing the worries of life because it needs concentration on a slightly different task than the actual focus of worry. That's one reason for my rhyming verses.Best wishesBill

Hi Bill The thing is I have never been one to write as I really never knew what to write about , hated that spot in school when you had to write essays and such , boy could I get an A these days lol . I had another person tell me I should be writing all this down , she told me I had cracked her up on one spot , at the time it happened to me I didn't find it so funny but about a month after as I called it my night in hell I had to laugh about it as well . Anyways I picked up my journal again and I am slowly getting it written down but I can't see a book or screen play :) but I will say this that when I am no longer around and that day will come our kids will have some very interesting reading to do or at least they will know what their mom went thru both with this and all the trouble I had with our daughter .So slowly the journal of my year of Hell has been started .On a better note I did see my family doc and she told me all my blood and urinalysis work came back okay except for my iron levels which are extremely low , so I am back on schedule again for my B12 shots and she started me on an iron pill she said is very good to get the levels back up again (said she had to be on it during her stay in the hospital as she lost a lot of blood after her accident ) the only thing worrying me is when I used to take iron pills they constipated me so that has me a bit worried but will see will happens , I will have to find foods to make sure that doesn't happen . Anyway I won't keep going on , I just wanted to say thank you for the explanation it did make sense :) and the journal has been started again :)Take careCathy

Hello Cathy. I always feel that the most interesting writing comes from those who are writing from their own experiences and are doing it because they want to. (not because it's a requirement from schoolteachers!) You never know about the screenplay or book as you cannot predict the future. Look at what happened to the diaries of Anna Frank! I found that Metamucil was quite a good combination with iron pills as it keeps the constipation at bay.Best wishes Bill

Hi Bill , you are right you never know :) . I am writing in the journal at least my family will know at some point all I went thru both physically and emotionally , trying to deal with everything that has happened over the last 15 months . So far the iron pills are not constipating me but I have only been on them for the week . I had to call my family doc to get in to see her early , I was suppose to see her this coming Thurs but the cold I had has caused me some trouble , when I get a cold I cough very hard , hard enough to pull muscles , once slightly cracking a rib ,but last Fri when I coughed I ended up yelling out in pain and grabbing the lower left side of my abdomen . When I cough each time there is a lot of pain there and it is tender to touch so she is worried I may have caused that hernia to start , only thing is it is not in the area the surgeon said it would be in , so it will be a long weekend for me till I see her on Mon .I am hoping it is just a pulled muscle but there is no pain when doing things only if I happen to touch that area or as I mentioned when coughing . So I guess I have more to write about , this book could be a long one lol . Take care Cathy

Hello Cathy. If your correspondence with us is anything to go by it sounds as if the journal will be a fascinating read. Best wishes Bill

thank for the lovely compliment :) , Not sure how anyone but the family will ever see them as I have never found a way to do it other then hand writing but I will continue to write , as it seems to help release the stress .It is a nice thought that some one would think it interesting but other then this past almost two years now I lead a very quiet life most times .I hope to go back to that quiet life of less worry but not sure if that will ever come but a woman can dream . Again thank you for the lovely compliment :)Take care Cathy