|
Post by ouchy on Jun 11, 2007 10:32:18 GMT -5
By popular demand, here is a journal for Cass to note her recovery from her recent bowel excision. Cass, please include your honest feelings on both the physical and emotional aspects. If you need to use bad words, go for it! Edite to add: This journal is at this time for Cass only. All other posts will be deleted. There is another thread where people can check on her and find out how she is doing, etc.
|
|
|
Post by cass on Jun 11, 2007 23:18:31 GMT -5
Symptoms: Ok. Since I was 17 I had always experienced severe period pain, I went to a gynae at this age who suggested going on the pill to alleviate the pain. So I did with little success.
Over the next few years I thought that experiencing horrible period pain was normal and i was just that person that had it worse than others and assumed being doubled over each month and skipping uni because of the pain was something i had to deal with.
It got to the point where I could not eat without lying on the floor holding my stomach in agony and only getting some sort of relief if i burped which was very embarassing!
As time went on the cramping got worse and the pain was there on a daily basis. I was told i had IBS and my gastroenterologist put me on a strict diet. I followed every detail and nothing improved. I seen doctor after doctor and was on medication for ulcers and nothing was helping.
I was in and out of the ER about 6 times in 7 months and put on morphiene for the pain and told your tests are negative we think you have gastro!
After this I decided to take matters into my own hands and referred myself to a local gynae. He suggested a laparoscopy to rule out related problems. So a few weeks later off i went for my diagnostic lap. When I went to the post op concultation my gynae advised I had stage 5 endo predominanty on my bowel and I need to go to the Endo clinic to have it treated. I was afraid but so relieved that there was somehting causing my pain all along.....
so here is a journal of the events that followed.....
|
|
|
Post by cass on Jun 11, 2007 23:23:05 GMT -5
After consultation with my gynae who was performing my surgery he ran through the risks associated with what was going to happen. I was afraid as this surgery was all very circumstantial and was +/- laparoscopy, +/- laparotomy and +/- bowel resection.
I was praying the collorectal surgeon was not going to play a part in the operation and that it was going to be excised with ease.
The waiting game bagun and I was counting down the days until my op. Every bad period bought me one step closer to surgery.
|
|
|
Post by cass on Jun 11, 2007 23:29:26 GMT -5
DAY 1 Monday May 28th
Today I was admitted into hospital. Everything was checked here on arrival health insurance, identification and insurance excess was paid. After this I made my way to my room were I was going to spend the night running to and from the bathroom after taking the dreaded bowel prep!
(Hindsight has since revaled that his is exactly the feeling I am still going through!)
The bowel prep did its job very well this night! I could hardly sleep though as I was so afraid of what was going to happen the day of surgery.
|
|
|
Post by cass on Jun 11, 2007 23:40:04 GMT -5
Day 2 - Surgery
I awoke today very afraid of what I was getting myself into. I could not eat or drink and my stomach was full of butterflies.
My boyfriend had come in to spend the day with me and to try and calm my nerves, but before I knew it, it was 12:45pm and I was saying goodbye to him as they wheeled me off to theatre.
As they were preparing me for my op my surgeons came around and said hi and asked how I was doing to which I replied "Is it too late to leave?" apparently it was Damnit!
My anaethitist introduced himself and for some reason only told me about an epidural 5 mins before surgery to which i said no its ok Ill have the general as i was so afraid of the risks he mentioned that were associated with an epidural so close to my op. (Stupid decision should have taken it!!)
I was injected and within seconds fully asleep and in the trusted hands of my gynae and collorectal surgeon.
Surgery went for 4 hours in total and I awoke in recovery screaming in the worst pain i have ever felt in my life! I remember telling the nurses to kill me and i wanted to die and i do remember them saying "see this is why people should have an epidural" (damn anaethetist for not advising me earlier about the epidural cause i was in a hell of a lot of pain!)
I later awoke in my room and was hooked up to a PCA machine where I could press the button for morphiene pain relief. I pressed it 400 times in 2 hours and apparently its only meant to be pressed once every 5 minutes. (thats how much pain i was in) I did however manage to get to sleep that night somehow.
|
|
|
Post by cass on Jun 11, 2007 23:47:37 GMT -5
Day3 I woke up very groggy and in a lot of pain and again was overusing the PCA machine. I had a catheter in and that was extremely uncomfortable. My anaethetist was the first person to appear today and tell me that I had major surgery - the worst he had ever seen. He advised that I had undergone a bowel resection with 40cm of bowel removed. I started to freak out and he said more information would come when I spoke with y gynae and bowel surgeon.
I looked down at my stomach and seen I had a drainage bag and 30 staples from my belly button to my vagina. All I could think about when looking a them was oh they are going to hurt coming out!
My gyane paid a vist and advised he had removed endo from my bladder, appendix, ovaries, pouch of douglas and my bowel. He said my bowel was a mess and every time they pulled it up there were endo nodules everywhere which resulted in the 40cm excision.
My bowel surgeon reiterated the above and said but don't worry i measured your bowel and it was 4 metres in length so you have only lost 1 tenth of your bowel - geez thankz... real comforting
That night was so uncomfortable. I could not sleep as the drainage bag and catheter were very painful. My sleep patterns were sort of one hour here and there and I was literally exhausted.
Day 4 The pain was very intense. I could hardly move as the incision site was very sensitive and the pain from the drainage bad and catheter were also hard to deal with. I was still on the morphiene I was receiving viz the PCA machine which provided temporary relief.
That night at about 2am I made y first bowel movement which woke me up. I had no choice but to go in bed as it felt as though I had no control over my bowels. It happened again at 6am. I cried and cried to the nurse as i was so embrassed about what had happened but they were very reassuring that it happens with this type of surgery.
The following day I was able to have my catheter removed as it was very uncomfortable. Upon removal I felt immediate relief but a burning sensation soon set in to which I was tld suffering urine infections after having a catheter was completely normal. This burning sensation lasted for the next 3 or so days and was treated with Ural.
Day 5 and 6 The PCA machine came out today and I was now sipping water and taking pain meds orally. I initially thought this was going to mean I was in a world of pain byt during the day i was OK it was at night trying to stay comfortable with the drainage bag that was proving to be difficult. The pain I experienced with the bag was horrible. I wanted to rip it out myself and the night nurses were constantly in and out of my room trialling different pain relief. Eventually I would pass out and manage to get an hours sleep!
Day 9 Today y collorectal surgeon advised I could go home. I was having bowel movements that were quite painful and were very loose and at times explosive so I really needed to be close to the loo. The burse removed my drainage bag which provided instant relief! this was my main concern as it hought this was going to be very painful, but it was not... i did not even feel it come out! the staples were removed and they too were pain free. the nurse that discharged me read out some instructions relating to pain relief and diet etc and i was FREE!!!
|
|
|
Post by cass on Jun 16, 2007 7:04:57 GMT -5
At Home
The first couple of days at home were horrible. Dont get me wrong, it was awesome to be in the comfort of my own home but the pain was there and the worst part was yet to come. I literally had to RUN to the toilet in order to make it. There were times that I didnt make it and I would burst into tears.
I have to admit the frequent stools are very unpredictable and uncontrollable. Everytime I would eat something it would go straight through me and i would be running to the bathroom. I would awake in the middle of the night with the same urge.
To make matters worse the third day I was home I developed an anal fissure which was agony! It felt like passing glass with each bowel movement. I called my surgeon who advised to consult my local GP for some ointment. I did this and the cream I was prescribed did in fact work which surprised me.
the following week was one of mixed emotions. I regretted having the surgery done and every time i ran to the toilet i would cry and cry and curse my surgeon. i was afraid to eat as it would mean i would have to sit as close to the loo as possible in order to make it.
It honestly didnt feel like this was going to end that i ended up calling my gynae's pager service to get reassurance. He told me that it had only been 14 days since surgery and everything I was going through was normal for that point in time. I guess there really is a big difference between him telling you before surgery of the effects of a bowel resection to then going through them yourself.
I went and stayed at my mums place for the following week which was great as i really needed some TLC. My bowel movements altered throughout the following week and the pains from the urge to go worsened.
It has now been 18 days since my surgery, and everything is very much out of whack. I am scared to leave the house as I still need to run to the bathroom, not as severe as the first week but when i need to go i need to go! the cramping is painful but pain meds assist with this. If you can overcome the emotional side of the surgery i think you will be better equipped to deal with the severity of what has taken place. I am still coming to terms with it all as it is a major upset to my digestive system.
|
|
|
Post by cass on Jun 16, 2007 22:22:55 GMT -5
I can see gradual improvements on a weekly basis moreso than daily... i still need to be as close to the toilet as possible whereever i go. The diarrohea is slowly subsiding in terms of not needing to run to the toilet in order to make it on time. I went to my post op gynae appt who advised my endo was very extensvie and widespread and amongst the worse he has seen in terms of it being everywhere. He drew a diagram and the diagram had me in tears as my organs that he drew were covered in spots which represented endo. My large bowel had endo shaved off it and a bit of that removed, 40 cm of small bowel removed and a massive nodule whihc was stuck to my rectum. My appendix was cut as was my bladder, POD ovaries and tubes. Surgery took 4.5 hours. He was sure he got it all though and so i can now say i am disease free.
I am going on Synarel to "turn off my periods" to try and keep my pelvis in good order for when i decide to have children. From what i have read you should only be on it for 6 months but he wants me on it for 2-3 years if thats how long i want to wait until i have kids which is really scary. I am vfery afraid of the side effects as I am 25 and about to start feeling menopausal effects! He told me i need to do this as if i dont prevent the endo from coming back then my bowels wont be able to handle it and i may end up with a colostomy bag (again i burst into tears!!)... apparently i will ineveitably need a hysterectomy...
im in a lot of pain today... too much pain to cry actually... the cramps that indicate a bowel movement is ont he way are horrendous and its a dtruggle to stand up straight... im hating this more than ever right now and praying it improves.
|
|
|
Post by cass on Jun 17, 2007 17:53:32 GMT -5
Its been 20 days today since my bowel resection surgery and this morning I am struggling to sit here and type this. I am in so much pain on both sides of my pelvis that i have to bend over to walk. I know most people start to recover after three weeks but I feel like I am going backwards. It hurts to cry but I so want to cry like a baby right now. My bowel movements are still scattered and unpredictable and it is still hard to leave the house.
I am praying every day as all i want is to be happy and healthy again and live the awesome life with my boyfrined that we had before surgery. Damn this stupid disease! Im sorry i cant be more positive but the pain is blocking any psoitive thoughts i could possibly experience right now. I hope that others that are having this op done do not feel like this at day 20.
|
|
|
Post by cass on Jun 19, 2007 19:11:31 GMT -5
Wow so its 22 days now since surgery. The past few days I have been experiencing alot of pain on either sied of mt stomach radiating more towards my hip bones. I was doubled over yesterday morning, and i finally called the suregon who advised me that i should go see him. He took a look and put it down to people recovering differently and this should subside. He ordered blood tests to rule out the possibility of an infection, which i have to get today as the stupid woman jabbed needles into veins in both arms and told me sorry love no blood. Grrrrrrr!!!
All in all I am still in alot of pain and discomfort. Yesterday I had another day where I could not leave the house without running to the toilet. I made it downstairs and literally had to bolt back up again.
|
|
|
Post by cass on Jun 20, 2007 20:06:35 GMT -5
I really want this to end.. I am officially over it! It is physically and emotionally exhausting. I can hardly sleep as I am waking up with diarrhea, i eat something and i run to the bathroom with diarrhea. Its been 23 days and i have had enough. I just want to wake up and ill be normal again. Everyone keeps saying "wow you look fantastic" but they dont see me after i eat and they dont feel the pain associated with each bowel movement and they dont know what its like to have to stay indoors as you are scared to go out in case you soil yourself in public. I am hoping things start to settle down in the next fortnight, I honestly dont know what i will do if they do not. The pain on a daily basis is hard enough to tolerate but the stool frequency is driving me nuts. I just want to be happy again
|
|
|
Post by cass on Jun 21, 2007 22:18:16 GMT -5
Today I thought was going to be a good day. I woke up at 8am had toast with jam for breakfast and kissed my fiance goodbye as he left for work. I was on the couch feeling preety good as i had not been to the bathroom nor did i have the desire to. Then it hit me. About half an hour later i was running to the bathroom with more diarrhea for the third week in a row. Its debilitating and horrible. I still can not leave the hosue and am scared to eat anything as I hate the adverse effects it has on my bowels. I cry every day and pray that this will end. Im hoping this improves as I am losing hope...
|
|
|
Post by cass on Jun 22, 2007 23:31:48 GMT -5
I cant believe its drawing close to one month since i underwent surgery for a bowel resection. Today i had some relief in the morning and was able to sit up without the pain. However I was off to the bathroom after lunch but the bowel movements arent as bad as they once were. I find myself not going as regularly today which is a good sign i hope.
Certain positions make me run to the loo more so than others. I cant sit with my legs up on the sofa and lye on my left side in bed as it seems to aggrevate my bowels and before i know it im making a mad dash to the bathroom.
Its also been a very emotional ride over the past few weeks. I have found myself crying alot and each time i dont make it to the bathroom in time i cry and cry as it is quite depressing. Each day brings with it different emotions and this journal has been a great way for me to get out how i am feeling and track how i have felt.
Im hoping this improves more and more in the next week or two as i really want to start leaving the house.
I have stopped eating dairy and taking a fermented drink known here as yakult and i have noticed a big difference today. The bowel movements are not as frequent nor as nasty. My trusty hot water bottle helps alot with the cramping pains as well.
|
|
|
Post by cass on Jun 24, 2007 2:43:53 GMT -5
Ok so today being a new day i thought i would wait until the evening to give you a run down on ow the day progressed. This morning I felt great... I was moving around more than usual and I thought finally thisngs are starting to mend, but of course I spoke too soon. I had some relief in regards to not running to the bathroom as often as i was say 2 days ago, but as soon as the pain hits in my left hand side i need to get to the bathroom. Today I think i have been about 4 or 5 times and the hurtful part is that my stomach pulsates when going like that feeling when you are dry reaching and your stomach goes up and down. I found it hard to move around as the minute i start to walk areound too much im off to the loo, so i have been sitting down most of the day and it gets uncomfortable once the pains start to trigger a bowel movement is on the way. All in all its not as bad as friday (2 days ago) but there is still a long way to go.
|
|
|
Post by cass on Jun 24, 2007 13:53:40 GMT -5
Well its 5am and im on the couch hugging my hot water bottle waiting for my pain meds to kick in to help alleviate the pain im having from my first period since surgery.
The pain is horrible and intense and constant probably worse than before my surgery which has surprised me.
I was up all night with this pain and am not getting any relief from the pain medication or my water bottle at this stage. Tomorrow I start my first dose of Synarel so I am crossing my fingers that the side effects are minimal and the benefits oustanding!
I had to take an Endone capsule for the pain this morning which is against my bowel surgeons instructions as apparently they put the brakes on your bowel movements but at the moment id be happier running to the toilet than having this pain - Honestly i dont know how much more I can take...
|
|