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Hows class of 2018 surgery comrades doing??

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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1653
Posted 7/28/2019 2:28 PM (GMT -7)
Things are going well with me.Everything flows thru me but only need bathroom 1-2 maybe 3x a day.Not eating much because of another possible hernia so trying to keep gut flatter.
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colitisresearch
Regular Member
Joined : Mar 2018
Posts : 77
Posted 7/31/2019 7:14 PM (GMT -7)
I’m coming up on a year since my step one of two. Things are pretty good although I still have a few lingering issues. But life is soo much better than pre-surgery.
I still have frequency but no urgency. Dr says frequency should decrease as time goes on.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17743
Posted 7/31/2019 7:33 PM (GMT -7)
I am not class of 2018, but things are still the same for me. Not much to report. I live a very dramafree life compared to my life with UC.
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colitisresearch
Regular Member
Joined : Mar 2018
Posts : 77
Posted 7/31/2019 8:19 PM (GMT -7)
Drama free is a good way to put it NSSG!
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1653
Posted 8/1/2019 12:24 PM (GMT -7)
Drama/issue free is a good life when discussing UC
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songlady
Veteran Member
Joined : Aug 2009
Posts : 3805
Posted 8/4/2019 8:29 AM (GMT -7)
Hi all! I have been meaning to check in! Pouch is doing good! We just got back from a week away, with time in a city and time on a lake, canoeing and swimming. All drama free, though I did make sure to pack calmoseptine to deal with the results of adventurous eating and the testing of local craft brews. ! I am still taking some immodium and lomotil, and metamucil, but less than I was. Surgeon said the chemo has made my recovery slower than otherwise might be the case. But I cannot believe how much the whole frequency/gas/etc thing has continued to get better over the months! Yay!

I finished radiation for the minor breast cancer on 7/9, and no drama there either. I have a slight tan in an area I've never exposed to the sun, is all, lol.

I do have quite a hernia. I saw my surgeon several weeks ago, and he said we'd see what it looks like when I have my twice-a-year CT scan in mid August (post colon cancer routine). I have a hunch it will need repairing; it does bother me some and I can't imagine it will bother me any less as time goes on...?

Champ - gosh, another one? I may be asking you some questions if I head in the direction of repair surgery.....

How's everyone else?
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1653
Posted 8/4/2019 7:08 PM (GMT -7)
Whats another surgery when u have had 3 already?? I mentioned to the plastic surgeon who did my hernia surgery that with my spleen surgery in 77 i have been sliced open 4x .I asked if i get free bagels if i go to 6 surgeries??? ha ha.Song where is your hernia?? Mine was at top of my stomach,i had a vertical incision with all my colorectal surgeries-lucky me.I take imodium/lomitil when i remember.
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Woogy
Regular Member
Joined : Apr 2004
Posts : 215
Posted 8/7/2019 7:07 AM (GMT -7)
Hey All,

Nice to see everyone doing better. I feel almost completely normal (finally), but still on antibiotics but they seem to be working now. I take 500mg of Cipro in the morning and 500mg of Flagyl at night. I hardly ever get up in the middle of the night anymore, unless I've eaten a large dinner and it was late. I'm still hesitant to eat certain foods though. But I did have a few drinks this summer and no issues which is huge. I'm going 4-5x's a day but it's formed. So I guess having only to take antibiotics and feel great isn't so bad. I didn't think I would ever get to this point.
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 5857
Posted 8/7/2019 8:54 AM (GMT -7)
Woogy,

Do you ever cycle off of antibiotics or take an antibiotic holiday? Talk to your GI, the antibiotic holiday may be a good thing to do. You don't want these to lose their effect or get Thrush.

My problem was that I would always get thrush from antibiotics after a certain amount of time.
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RunJerRun
Regular Member
Joined : Oct 2017
Posts : 130
Posted 8/7/2019 9:24 AM (GMT -7)
So happy to hear that everyone is doing good! This is definitely a long bumpy road, with occasional hailstorms, and hot lava!
It took a long time for me to get here but, the past couple months have been great. We went on a cruise, I’ve been training again at the gym, Mountain biking and kayaking. After being down and out for so long, it feels so sweet to be living again!
It’s been around 10 months since my takedown. I’m currently making about 4 pit stops a day (none at night). I drink some Metamucil at each meal and a over the counter probiotic capsule in the morning and that’s it. I stop eating around 6:00pm and that seems to helps me make it through the night without issues. I can eat most food. Spicy food is still a no-go and I take it easy on the salad / raw veg. Also, I try and steer clear of too much sugar, especially in drinks like juice or soda.
Another good note is that I just got my CT scan results back and my kidneys are cancer free 18 months and running.
So besides some occasional butt burn, I’m feeling totally blessed and happy to have my life back!
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Woogy
Regular Member
Joined : Apr 2004
Posts : 215
Posted 8/7/2019 11:04 AM (GMT -7)

ks1905 said...
Woogy,

Do you ever cycle off of antibiotics or take an antibiotic holiday? Talk to your GI, the antibiotic holiday may be a good thing to do. You don't want these to lose their effect or get Thrush.

My problem was that I would always get thrush from antibiotics after a certain amount of time.

No I asked my doctor about this and they said there is no need. I'm really concerned that eventually they will start to not work since I've been on them for so long. Again, when I asked my GI doc they said that won't happen. I really hope not because this is the best I've felt in a very long time.
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Andrina
Veteran Member
Joined : Aug 2011
Posts : 3690
Posted 8/8/2019 6:01 PM (GMT -7)
I had my colectomy in 2018 so can I consider myself to be part of this class?

I'm not doing well yet. I have cramps and every time I sit down or get up I get cramps. I try to eat slow.

I'm always dehydrated although I'm drinking 2 liters a day. My joints hurt.

I'm losing weight every day. I am not kidding. I don't know how much longer my body can take this.

I do not know if this gets better.

My stoma wound has closed after it was cauterized.
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colitisresearch
Regular Member
Joined : Mar 2018
Posts : 77
Posted 8/8/2019 7:04 PM (GMT -7)
Adrina- I was not doing well at that point after takedown either. I was having a lot of pelvic pressure, terrible frequency, butt burn and intense itching. I was pretty miserable. I think it was around three months post takedown that I started to see the tiniest light at the end of the tunnel. Things got better after that but it was super slow. Having said all that- I would talk to your GI about the weight loss and other symptoms.
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colitisresearch
Regular Member
Joined : Mar 2018
Posts : 77
Posted 8/8/2019 7:10 PM (GMT -7)
Wow! I just realized today is exactly one year since my colectomy (step 1 of 2)
It was a quite a year. Things aren’t perfect, but I am SO glad I did this surgery.
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1653
Posted 8/8/2019 7:16 PM (GMT -7)
1 year Aug 21st that i had surgery 3-been ok since except hernia
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songlady
Veteran Member
Joined : Aug 2009
Posts : 3805
Posted 8/9/2019 7:08 AM (GMT -7)
Today is the one year anniversary of my take-down! My Pouchiversary. It sure took me months to feel as though I was making progress, but slowly and surely it did happen. Andrina - I lost a lot of weight after the colectomy. And now it's coming back on, which for me is NOT a good thing! (I do ok at home, but if we go away for a few days and eat out a lot, I come back a few pounds heavier....)

RunJer - Congrats on the 18 month CT scan! Yay!
I have my one year post-chemo scan and blood tests next week.

Champ, the hernia is just above the stoma site, which is where it was trying to break through even when I had the stoma. All my surgery so far has been laparoscopic, so... I wonder what he'll do for this. But I have a big trip (Europe) planned for about 6 weeks from now, so nothing ain't happening until after.
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valli1234
Regular Member
Joined : Aug 2017
Posts : 443
Posted 8/9/2019 8:10 AM (GMT -7)
Hi guys it’s so nice to hear from everyone .
I just had my 1 year take down anniversary this week. I truly love to hear so many of you are doing well.
I have come to accept this is the way my pouch reacts to food I am still at the 10-15 mark for bathroom trips and my nights can be horrible but at this point I don’t care. My days are ok the morning is when I am able to function without running to the bathroom . I eat very little because I get upset about pooping all the time but it really makes no difference.
After finishing the FMT last month I saw a difference in the gas pain i was experience all the time . By the 4 th transplant all the gas pain disappeared and that alone is enough for me to be satisfied with the results .
I find after eating, I have 3-5 hours till I start hitting the toilet
Last night I had two small pieces of pizza just cheese and about 4 hours later it burned coming out . I had to have a sitz bath to control the pain in my back door area.
What I don’t understand is I have had pizza a time or two before and I was ok with it . Which is why I just accept this will be my new norm.

Other then that life is good
Had a few weeks at the cottage and another one coming up so my summer has been very relaxing.
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valli1234
Regular Member
Joined : Aug 2017
Posts : 443
Posted 8/9/2019 8:16 AM (GMT -7)

3timechamp said...
Things are going well with me.Everything flows thru me but only need bathroom 1-2 maybe 3x a day.Not eating much because of another possible hernia so trying to keep gut flatter.


Happy to hear 3TC your doing well. And agreed 4 operations in a year is enough for anyone .
How’s the business going ?
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valli1234
Regular Member
Joined : Aug 2017
Posts : 443
Posted 8/9/2019 8:25 AM (GMT -7)

songlady said...
Hi all! I have been meaning to check in! Pouch is doing good! We just got back from a week away, with time in a city and time on a lake, canoeing and swimming. All drama free, though I did make sure to pack calmoseptine to deal with the results of adventurous eating and the testing of local craft brews. ! I am still taking some immodium and lomotil, and metamucil, but less than I was. Surgeon said the chemo has made my recovery slower than otherwise might be the case. But I cannot believe how much the whole frequency/gas/etc thing has continued to get better over the months! Yay!

I finished radiation for the minor breast cancer on 7/9, and no drama there either. I have a slight tan in an area I've never exposed to the sun, is all, lol.

I do have quite a hernia. I saw my surgeon several weeks ago, and he said we'd see what it looks like when I have my twice-a-year CT scan in mid August (post colon cancer routine). I have a hunch it will need repairing; it does bother me some and I can't imagine it will bother me any less as time goes on...?

Champ - gosh, another one? I may be asking you some questions if I head in the direction of repair surgery.....

How's everyone else?

Songlady it’s so nice to hear from you and I am happy to hear all went well with the radiation . Hopeful the hernia isn’t going to be a big issue and if needed it’s a small repair .
Drama free is the key I truly believe that now.
How is working going ?
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valli1234
Regular Member
Joined : Aug 2017
Posts : 443
Posted 8/9/2019 8:38 AM (GMT -7)

Andrina said...
I had my colectomy in 2018 so can I consider myself to be part of this class?

I'm not doing well yet. I have cramps and every time I sit down or get up I get cramps. I try to eat slow.

I'm always dehydrated although I'm drinking 2 liters a day. My joints hurt.

I'm losing weight every day. I am not kidding. I don't know how much longer my body can take this.

I do not know if this gets better.

My stoma wound has closed after it was cauterized.

Consider yourself part of our class for sure smile
Sorry to hear you are still experiencing issues . Is it gas cramps you are experiencing?

I suffered with that till about July then I did 4 sessions of FMT and all the gas cramps have subsided .
I too have serve joint pain which i still have now . I was told since my autoimmune disease couldn’t attack my colon any longer ( some mean surgeon removed it lol ) it was attacking my joints . Voltern rub is my favourite friend it helps with most of the pain.

It will get better give it time we all heal differently.
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1653
Posted 8/10/2019 6:32 AM (GMT -7)
Valli/Song and friends everything going well-being we do interior and exterior work we stay busy til Xmas. I'm happiest i've ever been,life is good.Moms going thru bunch of health issues,cancer,low blood counts,spine fracture,blood transfusions,88 yo etc etc so Mom keeps us all busy if work isn't enough.She had 5 boys in 7 years without disposable diapers so we owe The Boss big time[ha ha].Song- congrats to you on your anniversary,as long as hernia isn't causing u discomfort then live life til u have time and are ready to rest and recover from surgery.Valli and anyone else having a tough recovery from surgery i think about you guys often,i feel guilty that im not having recovery issues.I pray that things will get easier for you.Be well all
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valli1234
Regular Member
Joined : Aug 2017
Posts : 443
Posted 8/12/2019 8:09 PM (GMT -7)
Thanks 3TC and it’s nice to hear you guys are all taking care of your mom . She has to be an amazing lady to raise 5 boys who now are taking turns looking after her.
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Andrina
Veteran Member
Joined : Aug 2011
Posts : 3690
Posted 8/13/2019 4:52 PM (GMT -7)

colitisresearch said...
Adrina- I was not doing well at that point after takedown either. I was having a lot of pelvic pressure, terrible frequency, butt burn and intense itching. I was pretty miserable. I think it was around three months post takedown that I started to see the tiniest light at the end of the tunnel. Things got better after that but it was super slow. Having said all that- I would talk to your GI about the weight loss and other symptoms.

Thank you this encouraged me. I'm close to three months so hopefully I get better. I combat butt burn by using zinc oxide so I've been fine so far with that.

songlady said...
Andrina - I lost a lot of weight after the colectomy. And now it's coming back on, which for me is NOT a good thing! (I do ok at home, but if we go away for a few days and eat out a lot, I come back a few pounds heavier....)

For how long have you lost weight and when did it start to turn around? If you remember.

valli1234 said...
I find after eating, I have 3-5 hours till I start hitting the toilet

That's about the same time frame I have experienced.

valli1234 said...
Consider yourself part of our class for sure smile
Sorry to hear you are still experiencing issues . Is it gas cramps you are experiencing?

I suffered with that till about July then I did 4 sessions of FMT and all the gas cramps have subsided .
I too have serve joint pain which i still have now . I was told since my autoimmune disease couldn’t attack my colon any longer ( some mean surgeon removed it lol ) it was attacking my joints . Voltern rub is my favourite friend it helps with most of the pain.

It will get better give it time we all heal differently.

Thank you for including me into the 2018 class smile Yes it's gas pain. And I can't always pass gas. I only can when I'm laying down. Standing up and passing gas is a big no-no.
So having joint pain means for us that we are still technically flaring then. Ugh. I've been taking Tylenol twice a day to keep my temperature normal (it's usually around 99.1-100.1 every day) and my joints from hurting. Otherwise I can't get through the day.
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valli1234
Regular Member
Joined : Aug 2017
Posts : 443
Posted 8/13/2019 8:01 PM (GMT -7)
It will get better give it time we all heal differently.

Thank you for including me into the 2018 class smile Yes it's gas pain. And I can't always pass gas. I only can when I'm laying down. Standing up and passing gas is a big no-no.
So having joint pain means for us that we are still technically flaring then. Ugh. I've been taking Tylenol twice a day to keep my temperature normal (it's usually around 99.1-100.1 every day) and my joints from hurting. Otherwise I can't get through the day.

Yes I rarely pass gas only in the toilet and it comes quickly and unfortunately it can be loud and embarrassingsad
The gas pain I suffered with daily and it was painful. I would say it only cleared up a month ago after the FMT before that it was my biggest complaint after my take down .
Why do you have a fevers everyday ?
Try the voltern rub it helps my joints I only use extra strength. Between my bathroom trips and my joint pain I only get an average of 5-6 hrs of sleep .
But with all that being said I
am now truly happier without my colon . Life with a pouch for some takes awhile to adjust . Give it time it’s still early and you are healing .
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Andrina
Veteran Member
Joined : Aug 2011
Posts : 3690
Posted 8/13/2019 11:02 PM (GMT -7)

valli1234 said...
Why do you have a fevers everyday ?

I would like to know the same. Before the colectomy I had daily low temperature like this and I was in Tylenol every day. I was flaring.

valli1234 said...

Try the voltern rub it helps my joints I only use extra strength.

Do you mean voltaren gel?
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