Hello,My mother is 77 yr old.She was diagnosed with follicular lymphoma ,she had to do 6 rounds of strong chemo ,cancer was gone by the 3rd round wished we and doctors had sense to stop chemo then. by the 4 month she started going down not being able to walk far and no appeitie ,we knew chemo was why ,but we chose not to do the last treatment ,something wasnt right ,by the next week she was in congestive heart failure and septic ,she had a absess on bowel caused from diverticulas (she always had a mild case in the past nothing crazy ),they used antibotics to shrink ,but doctor on call wanted to go in ,by no staff on weekend so they waited, so doctor figured antibotics was working .So my mother was in hospital from July 14 till Aug 1st.Came home with a TPN bag because she was malnourished from the chemo months earlier ,she had no appeite.
I lived with her noticed a week later her belly looking swollen went to ER Aug 8th her bday sat for 6 hours ,got a room after 2 days in ER no beds ,did test thought she might have a block apparently didnt see anything was sending her home a week later on a Sunday l ask doctor that was discharging her could he please take one more Xray and sure enough a blockaged and she had emergency surgery And she woke up with 2 bags One is a loop Colostomy and the other a Mucous Fisluia l believe that one is what the name is just occasionally has muscous come out the other is liquid to pudding consistency.
She was very depressed after seeing bags and scar ,surgeon put stomas very close to incision ,and feces was going into incision right before it was almost healed and she got sespic again this time she almost Died was in ICU for weeks and was moved up stairs ,waiting to be going to a Rehab center ,Basiclly a nursing home which was horrible .So now mom was brought in Aug 8 th to Sept.15th at the hospital ,Was brought to nursing rehab ,but they did nothing she was there to learn to walk again since she was in bed the whole time ,l finally took over changed her wafers the nurses did nothing l caught that her incision looked like gettting infected which they biospyed and it was ,gave antibotics to clear before it got worst ,finally l said im takin my mom home and will rehab myself that last 1 week they statred getting her up ,l believe they wanted my mother to become a resident ,and they realizes l wasnt going anywhere ,l went there everyday after work and cleaned her up and brought her food ,So long story short ,Its time where my mom wants to be reverased ,the Surgeon gave us all these scary things that can happen during and after surgury ,l guess this Surgeon is the best and he said hes done worst surguries what ever that means and now l dont want her to do , l do want her to do though but im so scared and so is she ,He had her do a colonoscopy ,but he wasnt able to do because he mentioned scar tissue and didnt feel doing another one would matterr .
l do blame chemo ,neglect from hospital and nursing home ,she was at a bad state to begin with but now shes healther and chemo free and cancer free .She had the surgry bags Aug 15 th and it took months for incision to heal l had to pack it and everything ,so just nervous to have to do all over again..Her surgery is May 1st /23 and not sure if we should cancel and wait ,he told her just to think about ,l know doctors have to tell you all the bad ,but l wished he mention the good as well ,he never said he wouldnt do or didnt suggest the surgury ,but l felt like he wanted us to read between the lines.We were so excited to do the reversal The loop colostomy the doctor said small surgury ,but the other bag that goes to anus reattaching is the bigger 2 or 3 hour surgery So ,im wondering did anyone go through the same thing or chose to do or not do surgery and do you regret your deciision ,thanks
no, im sorry i meant when i make the hole size for her stoma on the wafer its more of a oval shape ,so i have to push the stoma to lie flat on her belly ,then l put wafer on her and then the bag ,(i could put bag on even if it protrudes out though ) if it was more flush l think she would be happier shes a phyical person and she doesnt want to hit it when she lifts and works around the house ,l thought the same thing to ask doctor to do the loop colostomy only ,but l figured the waste would have to come out of the muscous fistula ,but that was something l wanted to ask even make it smaller,Unfortulaty the surgeon who did her original emergency operation ,isnt doing the surgery ,he feels his hospital to small and wants her at a bigger hospital and he feels this operation is out of his league ,so he gave us the next best doctor ,but the new doctors bed side manners are difficult to talk to ,so every time i ask something ,hes answers are short ,and my moms afraid hell get mad and drop her as a patient ,but everyone says if this operation can be done ,hes who you want ,im going to call his assitant l heard shes easy to talk to and could possible answer my concerns....l think my mom forgets how long it took her to heal last surgery ,grant it she was very sick before emergecy surgery and chemo in her system and malnourished ...its just so nice to see her driving around and taking her friends out and tryin to be her ole self ,but i know she doesnt feel complete ,l know shes scared of this surgery ,but trys to think of the good it may have ,l usually visit her after work ,and we are not so anal (no pun taken lol ) worrring if she strung a leak since her incision is healed ,right now l can do this and help her ,lm afraid she will have to be put in a nursing home and l wont be able to help her off the bed and such if this immobles her down the rode ,i dont know ,Thank you for listening to me ,in my heart l feel everything will be good,by you just always have that thought
Hi JoshA
It’s definitely something to ask. Though would the whole point of reversing the stoma not be for waste to go the “normal way” and not into any kind of bag?
It can be very unfortunate if a doctor doesn’t seem to have a very empathetic manner, but the main thing is his ability to do the surgery. But if you can ask questions of his assistant (if that person is a medical professional) then that could be helpful for you.
Remember too that they would not be considering these procedures unless your mum is considered fit enough to get through them.
I’m sure it’s still a scary thought for her contemplating more surgery, but she’s really fortunate in having you to look after her so well.
Sarah xx
Good Morning ,So good news my mom had her reversal on May 1st the doctor is taking it slow with her and not allowing her to eat or drink to let bowels rest and heal so it wont cause leakaged ,She has a tube in nose that is sucking stomach fluids out and once that stops they can take out tube in nose ,plus she has to pass gas as well which she hasnt ,yet ,her heart rate has been a little high so they havent had her walking or getting up to go to the bathroom ,just she sat in chair one time ...Would you think this is normal for her to have not passed gas ,i dont know how to help her in doing that so she can get rid of tube in nose which she hates
Hi JoshA
That’s good news that your mum has come through her op. I didn't have to have a naso gastric tube after my surgery so I don’t have any experience of them. It would be best to have a word with her doctor or the nurses looking after her to see what they say, but I’m sure she will be getting good care and they will be monitoring everything carefully. It does take time for things to settle after any surgery, so try not to worry.
Sarah xx
Hi Joshua
Thars such good news that your Mom has had her operations and is recovering
I didn’t have a tube I was offered food which was breakfast. My bowel and rectum hadn’t been used for thirteen months so it was all very strange experience. I passed wind later the second day it was a tiny made me laugh.
Keep us updated
Best wishes
Ann
It’s a really strange feeling. I was unable to pass wind for years anyway as I was almost blocked. The sensation gave me the giggles
I know how she feels about first bowel movement. Mine happened at home it’s very strange I thought of it as though I had a new rectum which was small on storage so I needed to be patient
i didn’t have support in the hospital im not sure my ward knew how to handle it. When I asked for a dressing change they ran. Eventually a nurse came in and asked to see my wound. She looked at my back!
Hopefully your mom sounds like she’s on a knowledgeable ward
For her discharge when she gets home it’s a good idea to have some incontinence equipment. It’s not forever. It’s on waking up and getting to the toilet. I actually slept downstairs as the toilet was quick to get to and easily cleaned and I found the pads a much better as easy fast access.
I had a food diary and went back to the types of food I had early with my stoma. So low fibre and little amounts.
There’s a LARS group within this forum that has lots of tips.
So it’s definitely worth checking that out and pop any questions there when she’s home
best wishes.
Ann
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