Recently taken-down friends

What type of cancer are you being checked for? My surgeon said cancer of the small intestine is very, very rare.

Hi guys thank you for your concern. I have an appointment with my GI Dec 20 maybe he has suggestions or can answer why it’s taking so long to adjust . I have said this before I think my surgeon is fantastic for surgery but after care she seems to answer “it’s normal” for all my symptoms . And once again I don’t think suffering this long with pressure and spasms is normal . Yes they have decreased slightly but I still go up to 15 it more times a day and experience slightly less painful spasms.

Thanks 3TC I can’t believe it’s almost been a year next week. Hoping this year is my year to heal and gain back some youth. Yah wishful thinking lol
Like you said the UC monster is gone and we can only look forward . I have always been a traveler but after this year I realize just how precious life is and I am taking a few extra ones per year.
Glad you are getting the bump looked at around your incision site it does sound like a hernia . I have been so careful not to lift anything heavy . My dad had diverticulitis and had a major hernia after his operations, he never did have the operation to fix it he lived with the large protruding bulge on half his stomach. We have a long family history of stomach problems , UC and stomach cancer. Glad mine is gone it elimates what others in my family have suffered with for many years.
Like you I am grateful for all the support this forum offers specially the class of 2018 👼
Thanks again

valli1234 said...
Hi guys thank you for your concern. I have an appointment with my GI Dec 20 maybe he has suggestions or can answer why it’s taking so long to adjust . I have said this before I think my surgeon is fantastic for surgery but after care she seems to answer “it’s normal” for all my symptoms . And once again I don’t think suffering this long with pressure and spasms is normal . Yes they have decreased slightly but I still go up to 15 it more times a day and experience slightly less painful spasms.

I get the reluctance to prescribe antibiotics but why not at least some anti spasm medications for you? Just for a level of comfort for a couple of weeks.

Surgeons have the worst bedside manor. (making a sweeping generalization)

Hi all -

I've been lurking. Valli, I'm sorry for what you've been going through!
So, without a colon now. what's the relationship between emotions and increased bathroom trips?

I'd had some work related dinners and found that I had frequency and urgency during those, though in general my daily bathroom trip count had been declining.

And then my mother died sort of unexpectedly last weekend. (She was 92, had been ill, but was still on her own, independent....) And so my BM count is way up, urgency..... all the emotional responses of having a colon.

I called the surgeon's office and the very competent nurse suggested I switch back to Lomotil, 4 x a day, 2 before each meal and bedtime, and call her again tomorrow. The Lomotil make me a bit sleepy but they've helped some.

I know the emotions of the last week, along with the family time that has given me less control over meals, has not been helpful. But that's the way it is, I am doing the best I can. And this week will be more of that. Any tips..?

I am so sorry to hear about your mom. it's never easy, 92 is a long life, and to be healthy and independent the whole time, that is incredible. I wish that for all of us. You are still recently taken down, but if urgency and frequency continues, definitely make an appointment. It could be something that's treatable. I had a lot of urges, and small capacity in the beginning, and that might be what you're dealing with. It does get easier.

Valli im a recovering alcoholic[29 years sober].In A.A we learn no one is allowed to take our happiness away from us EVER unless we let them. I can only take care of myself so thats what i do.In our first 4 way with lawyers my lawyer said your wife is so angry,i said i don't care.Life is good,surgery went well except for hernia and only good things ahead.My travel agent[her name is Valli] said go away and have fun so I'm taking your suggestion.Not sure where yet-DONT WORRY BE HAPPY

Told Song to go down to Florida with you,we have all been through a lot this year but Song has been on a roller coaster. My lawyer said in a divorce the anger,resentment,rage with people cost them thousands,now its costing me big $ bc she wants to try to buy house which means meetings/paperwork to find out if she can.She is a chronic liar so have to read in between the BS to get the correct answers.Can't wait to lay on a beach somewhere drinking my beer[Root Beer in my case].Surgeon tomorrow to find out about hernia.Will stop and see tree in Rock Centre,should be fun

Beautiful with plenty of traffic.

Hi guys, well I had two appointments on Thursday my surgeon appointment in the morning was as sort of expected . This is normal etc... hopeful you will settle down if not we can do an reversal ( sorry for this but ***) sorry I said I didn’t go through a year I never want to repeat , three operation in that little time .
The only thing she did say is I did have a small amount of inflammation so she sent my biopsy to a pathologist for an second opinion making sure it’s not Crohn’s disease . Which I don’t understand because it was my belief that after removing my colon it was sent off to a pathologist to be tested for that exactly . So why my doctor wants my biopsy’s sent out now to see if I have crohns is beyond me . I have two extremely painful External hemorrhoids. That are causing so much pain . The Doctor said over the counter cstuff don’t really work , she gave me a name of an natural oral pill that is used in Europe ahd said it may help. Will try it can’t hurt

My next appointment was for my gastro I waited 55 mins in the waiting room when finally I had to leave . I had a meeting with a client that I couldn’t miss and 55 mins for just waiting is nuts . I re booked it for Jan 3

I agree she should have treated me for the inflammation . She said there is nothing for hemorrhoids, other then the oral pills . Over the counter won’t work she also mentioned . We have to control my BM first.
I have said this before great surgeon but I feel she knows crap about the after care . My appointment with my Gastro is next week then I should be gettimg the required help I need.

Wishing everyone a Merry Christmas and a Happy New Year Health and happiness to you all and your family . 👼👼

Hi guys well I actually feel like there is hope. I had my gastro appointment today and after hearing all my symptoms he believes I have pouchitis. Pretty sure we all agreed I had that months ago but my surgeon didn't. What gets me so upset is all the pain and suffering I have dealt with these last few months and hearing my surgeon say she thinks " its normal" all my symptoms . The gastro said "surgeons are only good at cutting you open" and I couldn't agree more.
By the end of my appointment I burst out crying saying " I felt like someone was finally in my corner and it was nice to have his positive outlook not just negative ones " like I received from my surgeon .I told him I would read all your comments on this site about how all the other J pouches are happy with their pouch and I would sit at home crying reading it thinking my decision to have the pouch was the worst thing that has ever happened. I just want to feel normal again. I want to sleep more then 2 hours at a time I truly want my back door area to heal, It would be nice to be pain free and not suffer with gas cramps all day long.

And I never want to hear a doctor say BS like my surgeon said to me 2 weeks ago " well you can get a reversal " who says that to a someone that just under went 3 surgeries in 9 months. So its goodbye to my surgeon. I am going to fight for this pouch not give up.

The gastro is starting me on 500 mg Metronidazole and 500 mg Ciprofloxacin for 14 days and he wants to do a pouch exam asap I have an appointment booked for next Wednesday. He said there are a few different meds we can try if that doesn't work. I walked out of his room with HOPE for the first time in a long time.


Thank you guys for listening to me rant all the time. Its nice to know you get it.

3timechamp when is your surgery?

Riseagainstbadmusic said...

notsosicklygirl said...
I am sorry valli, that is frustrating. I wonder why she didn't give you an rx for the hemorrhoids??? Even something to help numb them can be helpful. Did you do upper GI testing prior to surgery? It's good you got the biopsy, not sure why she would think crohn's, but I guess you never know. I've heard of people developing Crohn's after UC surgery, but not immediately after like you're experiencing. It could be pouchitis, which is like crohn's of the pouch, did she give you any other medication to try? I think it's neglectful for her to find inflammation and not provide treatmnt.

Pouchitis is not like crohns of the pouch. Crohns is crohns. Pouchitis is non specific inflammation.
It's something all jpouchers will get at least once in their lives, some get it chronically. I was diagnosed with crohns after months of my GI treating it as pouchitis. Until they take biopsies, it could be crohns, it could be just non specific inflammation in the pouch.

Riseagainstbadmusic I had a biopsy done of the colon after my first operation, that is why I dont understand why she is doing another biopsy and that was ordered by the surgeon she was the one that thought maybe crohns. My new gastro thinks pouchitis. When did they take your biopsies? And what where your symptoms.