Surgery Monday .. any helpful thoughts to get me through this

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valli1234
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Date Joined Aug 2017
Total Posts : 32
   Posted 12/1/2017 9:28 PM (GMT -7)   
They are giving me an addition two days to see if the hurmia will
Work if not surgery Monday. They will be removing my colon (total colectomy ) create a
stoma and go back in 1-3 months later to do the J pouch
I am so scared. Please help
Anything helpful 🙏👼

3timechamp
Regular Member


Date Joined Oct 2009
Total Posts : 489
   Posted 12/2/2017 6:39 AM (GMT -7)   
Is UC affecting your quality of life?? If yes and your UC is not responding to meds then surgery could be best option.Im having surgery in January bc after 32 years i have BIG D 24/7 and i don't want to live like that.My colon is not responding to any meds including prednisone which usually works well for me.Most UCers who have had surgery usually say it was a good decision.This diseases SUCKS and i want this diseased body part out of me and i will adjust to whatever comes my way.Where do u live?? where u having potential surgery??? I'm in New York so theres many good hospitals/surgeons here-good luck

valli1234
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Date Joined Aug 2017
Total Posts : 32
   Posted 12/2/2017 6:55 AM (GMT -7)   
I live outside Toronto and the hospital here is amazing St Joseph in Hamilton it’s also a teaching hospital the residents are right on that ball . I feel very comfortable with the surgeon other then the fact she thinks hurmia should already be helping me . Been on hurmia 160 mg since November 24 then a booster dose 80 mg 6 days later . That is why we are waiting till Sunday to see if we should go through with the surgery. I don’t want to make a huge mistake and not give the hurmia time
My BM still are pure liquid mixed in with blood right now and last night I only
got up once and two trips this morning . More diarrhea then blood which to me is a good sign 🙏

Diagnosed with Colitis at 23 only had 6 flares ups lasting each over a year.
Went into remission 2008 and just started my worst flare up in June
15/20 BM with pouring blood all day
Tried all the meds
Except for hurmia which I just stared November’s 24
Mother of 4 children., 47 years old

3timechamp
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Date Joined Oct 2009
Total Posts : 489
   Posted 12/2/2017 7:03 AM (GMT -7)   
Can life after surgery be any worse then what in living with now??? i don't think so,i am getting up during night also so sleep hasn't been great.Im looking forward to a better quality of life.I know i have to LET GO and LET GOD take over.I trust my surgeon so looking forward to getting diseased colon out of me

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 15435
   Posted 12/2/2017 8:59 AM (GMT -7)   
I don't think you should let the hospital dictate what you do. You should decide whether to have surgery. You're an adult. If it's not what you want, or you don't think it's warranted, you can likely get up and sign yourself out of the hospital.

I had surgery, and for me, it was the best thing. I was so sick of the drugs, doctors appointments and hospital stays. Life after surgery isn't perfect. You will go to the bathroom more often, but all in all, you will likely spend a lot less time concerned with bathrooms, and less time in bathrooms, than you did with UC. My life is vastly different since surgery. Prior, I was on a lot of drugs, I would wake up and take up to 16 pills a day. I needed infusions, prednsione, blood draws every month or every 3 months. Not to mention the side effects i had from prednisone. My weight ballooned. I was up at weights I won't even say, but since getting off, I am back to my tiny youth figure. My life with UC included frequent follow ups with my GI - all this was expensive. Between the drugs and the doctors, I hit my max out of pocket every year on my insurance. That's about $5000 + monthly premiums. Since surgery, I don't do any of that stuff. I don't take a single pill - unless it's a vitamin and I choose to, I don't go to the doctor, except for a check up. I went once this past year. It's been so much less drama. If I had 4 kids, I'd certainly want to get on with my life without UC, but no one guaranteed a great result, so it definitely takes careful thought and proper planning. Upper GI series to ensure UC and not Crohn's, best surgeon with the most experience you have access to. I wouldn't rush into it without trying the drugs, but if the drugs dn't improve your quality of life, don't give up too much of your valuable time.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

valli1234
Regular Member


Date Joined Aug 2017
Total Posts : 32
   Posted 12/3/2017 12:23 AM (GMT -7)   
I agree with the above!! I just don’t think I have given hurmia a fighting chance
It’s only been 17 days since the first shot and 4 days since the second
That’s why I was thinking another week . I am not in denial I just want to be 99% sure we tried everything
I am not worried about costs I have free benefits and hospital care so I am lucky that way .
I worry about all the stuff that comes afterwards
Will they be able to do the J pouch ( I have a boyfriend and I still want to feel sexy around him )
He says those things don’t matter but to me they do . If they can’t create the pouch what will life be like afterwards?
See I am getting ahead of myself
But I can’t seem to look at the worst case here . I
Should be looking at just now but my mind travels into the what if ...part all day long

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15435
   Posted 12/3/2017 12:17 PM (GMT -7)   
If you think there's hope for the drugs to work, tell them you're not ready. Don't let anyone pressure you into making a life altering decision. You're the one who has to live with the repercussions. I haven't heard of too many UCers who were not candidates for a j-pouch, but these are all questions you should have answered before having surgery. I could feel sexy with my ileo, but everyone is different, and no one can predict how you will feel, plus there really isn't a reason to rush into surgery - unless you had a perforation or some medical situation going on.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

fredflats
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Date Joined Mar 2012
Total Posts : 38
   Posted 12/3/2017 4:52 PM (GMT -7)   
My first flare lasted for months, I went into the hospital severely anemic, and I took two weeks in there before showing any response at all to 60 mg/day of methylprednisolone. But a decade later, here I am, colon perfectly intact and two weeks ago (before my ill-advised surveillance colonoscopy) I'd never have known I'd had anything wrong with me. I was even able to taper down from the mesalamine after a few years. This disease is weird and poorly-understood. My best asset was having a doctor who could keep me and my family calm and was willing to try everything before going ahead with surgery.

I kind of wonder what would have happened had I not made any progress with the steroids. They always told me that cyclosporine was a preferred rescue method as compared to a biologic. I still haven't tried any biologics because they seem so finicky to me. The thought of surgery still scares me...so irreversible. If you are a young person I hope you can avoid it. I will be thinking of you tomorrow.

valli1234
Regular Member


Date Joined Aug 2017
Total Posts : 32
   Posted 12/3/2017 5:10 PM (GMT -7)   
Well no real improvement today . But I told the two surgeons I wasn’t ready yet let’s give the hurmia a few more days . Meeting up with the GI tomorrow and surgeon again so let’s see how the next few days go . Just want to give hurmia a little more time

Thanks everyone 👼

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 15435
   Posted 12/3/2017 5:21 PM (GMT -7)   
fredflats said...
My first flare lasted for months, I went into the hospital severely anemic, and I took two weeks in there before showing any response at all to 60 mg/day of methylprednisolone. But a decade later, here I am, colon perfectly intact and two weeks ago (before my ill-advised surveillance colonoscopy) I'd never have known I'd had anything wrong with me. I was even able to taper down from the mesalamine after a few years. This disease is weird and poorly-understood. My best asset was having a doctor who could keep me and my family calm and was willing to try everything before going ahead with surgery.

I kind of wonder what would have happened had I not made any progress with the steroids. They always told me that cyclosporine was a preferred rescue method as compared to a biologic. I still haven't tried any biologics because they seem so finicky to me. The thought of surgery still scares me...so irreversible. If you are a young person I hope you can avoid it. I will be thinking of you tomorrow.


Maybe you would have lived a life free of UC and worry. I have been since i had surgery 2 years ago. UC is something so far from my mind these days. The problem with surgery is that some people have surgery and have problem after problem, and some people forget about it altogether and get on with life. You just don't know which you will be. There's a chance you would have had surgery and never turned back, lived a full life, with no threat of UC ever again. No need for pred, no need for surveillance, no drugs, no increased risk of colon cancer. Really the best of the best. Now in your current state, you may stay free of flares, but you need drugs and surveillance, and you have higher risk of colon cancer. I am thankful to no longer be in that category.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

3timechamp
Regular Member


Date Joined Oct 2009
Total Posts : 489
   Posted 12/5/2017 4:36 PM (GMT -7)   
Any luck with Humira kicking in??

Connor77
Regular Member


Date Joined Jul 2016
Total Posts : 368
   Posted 12/5/2017 7:03 PM (GMT -7)   
valli, if you've been on Humira since Nov. 24, that's not even 2 weeks. It can take weeks to months for a new biologic to work. They are not giving you enough time. Although, understandably, your condition is severe and so they are trying to help you as much as possible ASAP.

I have had 3 fulminant flares since 2013 and I refused surgery each time. Each time I ended up recovering. I started flaring severely this past July and my flare is just ending now, just as severe as the last time. Doctors threatened me (not asked, threatened) with surgery many times.

You and I both live in Canada. The Canadian public health care system is not just about helping patients but also about cutting costs. It costs on average $5,500 per day to keep a UC patient in acute care. Removing your bowel costs them more up front but less over the long term, so it's more cost effective for any given hospital to do bowel surgery. I stayed in the hospital once up to 6 weeks. The longer I stayed there, the more abusive the doctors got toward me and my family. I was sucking up their time and resources and not getting better on their schedule, so they wanted my bowel out. I had to sign myself out of the hospital and go home, in critical condition, in order to avoid involuntary surgery. I then found alternatives that got me better and out of that flare. No flare was as bad as that one. I can manage it better now.

I'm not saying that's their main motivation but it's a major factor. You shouldn't do surgery just because they are refusing to give you more time or explore other options. You should do it because you are actually sick of this disease and you feel it's the best choice for you. I have found healthy recovery with non-surgical alternatives, and like you, my body does not respond to conventional treatment. In hospitals you will always be more pressured because the doctors are looking at cost/benefit analysis to their health care system AS WELL AS your well-being.

Right now I'm on an anti-biotic protocol called AMAT and I'm taking Low Dose Naltrexone. I'm symptom free.

I'm not telling you what to do. You need to make the choice that's best for you, based on your awareness of your own body, the support systems available to you, and realistic self-assessment.

notsosicklygirl is giving you good, compassionate advice. Her surgery went well. Surgeries don't always go that well. There can be complications for a long time, or there can be none. Some people get j-pouches and they're in remission forever, others get them at they have pouchitis forever. So you need to weigh what is more risky to you: continuing in your current condition or having surgery. Only you can decide. It's a lot of pressure and there are a lot of unknowns. Hamilton is near McMaster University so you are in one of the best areas for medical care. That doesn't mean you should give up your right to decide to doctors. Decide FOR YOU not them.

Post Edited (Connor77) : 12/5/2017 7:06:16 PM (GMT-7)


ECRM
New Member


Date Joined Oct 2016
Total Posts : 1
   Posted 12/5/2017 8:24 PM (GMT -7)   
I want to share that 14 months ago - my daughter was on the verge of having the surgery. She had been diagnosed with Pancolitis in February, 2016 and had done Prednisone and then Remicade, Lialda Uceris, and Remicade stopped working. She had started 6MP in September 2016 and had a sigmoidoscopy in October and was pretty inflamed. She didn't want to try any more meds and wanted to have the surgery. The doctor suggested she give 6MP a little more time and add in Entyvio. It was another month of suffering for her but by last December, she was getting better. No more bleeding - no more anemia - better symptoms. Today, she had a follow-up Sigmoidoscopy and she was completely clear. She is in remission. She will stick with the Entyvio every 8 weeks but will start tapering off the 6MP. I am sharing this because the way she was feeling in October, 2016 - we were all ready for that surgery and now she is living symptom free. We have no way to know how long she will be in remission - but she is doing very well now.

iPoop
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Date Joined Aug 2012
Total Posts : 11047
   Posted 12/6/2017 6:37 AM (GMT -7)   
valli1234 said...
Well no real improvement today . But I told the two surgeons I wasn’t ready yet let’s give the hurmia a few more days . Meeting up with the GI tomorrow and surgeon again so let’s see how the next few days go . Just want to give hurmia a little more time
How'd it go? Are you still giving Humira more time or did you decide to go the surgery route?
valli1234 said...
Will they be able to do the J pouch ( I have a boyfriend and I still want to feel sexy around him )
He says those things don’t matter but to me they do . If they can’t create the pouch what will life be like afterwards?
Many but not all UC patients are candidates for a J-Pouch. You won't know for absolutely sure until after the colectomy. After the colectomy, they want to be as sure as they can be that you do not have Crohn's disease, and they'll look at your large intestine in greater detail after its removal to ensure it is truly a UC case. As Crohn's patients aren't eligible for a j-pouch. Long odds of having Crohn's but they just want to be as sure as possible.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

U.C. = Unimaginable Crapnado

Post Edited (iPoop) : 12/6/2017 6:40:53 AM (GMT-7)


valli1234
Regular Member


Date Joined Aug 2017
Total Posts : 32
   Posted 12/6/2017 6:45 AM (GMT -7)   
Connor77 what a good read and I am sorry you had to fight with the idea of surgery 3 times . What you are saying makes sense . I couldn’t believe it last week when the surgeons and their team basically out of the blue said surgery in 2 days . I was shocked I actually started crying for it was the first time anyone had mentioned surgery. It wasn’t till the GI team came along that I said “ no we haven’t even given hurmia a week yet”
Long story short the surgeons have been put off till next week and the GI will continue to monitor by daily progress. Which I am happy to say is improving,, BM have gone down good sign blood is still there but not pouring . Only problem is my hemoglobin is again at 70 today and dropping .
Will
See how today goes




She

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 15435
   Posted 12/6/2017 8:18 AM (GMT -7)   
That's great to hear. I don't know why they keep threatening you with these deadlines. Take your time and heal. If things are improving, there's no reason to have a surgery date scheduled.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11047
   Posted 12/6/2017 9:09 AM (GMT -7)   
Glad to hear you are feeling better!

Ditto NSSG. If you are improving forget the surgery and arbitrary deadlines. It sounds like you are getting a response to the Humira. Give humira a full 6 weeks and see where you stand. For most of us, it takes at least 6 weeks to have a bigger response from biologics like humira.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1999
   Posted 12/6/2017 9:44 AM (GMT -7)   
I think its outrageous that they are putting pressure on you.

I would be tempted to leave the hospital and go home if you are able to.

When you are ill it is hard to think clearly and 2 weeks is nothing for Humira, it takes 6 weeks to fully kick in.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

valli1234
Regular Member


Date Joined Aug 2017
Total Posts : 32
   Posted 12/6/2017 8:13 PM (GMT -7)   
I agree that’s why I said no . The new GI here this week is amazing
I can’t just yet my hemoglobin was at 67 this morning so I had two blood transfusion today. Let’s see what my number is tomorrow morning . Plus I still have accidents was walking the kids downstairs around the hospital and I didn’t make it to a bathroom looked like a murder scene had to send the boys up for towels and a new gown. I hate this disease a 47 years old women on the floor pooing blood and blood .
Let’s hope tomorrow is s new day and my BM have decreased ahd hemoglobin goes up

Thank you all again

3timechamp
Regular Member


Date Joined Oct 2009
Total Posts : 489
   Posted 12/7/2017 7:08 PM (GMT -7)   
Surgery one month from this week for me,let me know how Humira works for you?

Connor77
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Date Joined Jul 2016
Total Posts : 368
   Posted 12/7/2017 8:24 PM (GMT -7)   
I'm echoing what others are saying about taking your time, however if your hemoglobin is 70 you should not go home yet. If you do, you'll just end up back in the hospital from blood loss.

If they can give you blood infusions then maybe going home would be an option.

Either way, if you stay at the hospital or go home, you have a right to wait as long as you want before accepting surgery.
DX left-sided UC 2015, 3 fulminant flares since then
Diagnosed with mycobacterium avium paratuberculosis (MAP) September 2017
Commenced AMAT (rifampin, clarithromycin, clofazimine) November 1 2017
Intolerant to clofazimine, stopped taking
Others: prednisone 10mg, Entyvio every 4 weeks, Low Dose Naltrexone 3mg at bedtime, natural ferments

valli1234
Regular Member


Date Joined Aug 2017
Total Posts : 32
   Posted 12/8/2017 8:47 PM (GMT -7)   
Well I had a meeting with the surgeons and GI teams ahd they all agreed I am not getting better only
worst my hemoglobin drops everyday I am still bleeding and i had two accidents in 2 days were the bathroom was only 5 feet away and I didn’t make it , blood and diarrhea everywhere one in front of my doctor sitting in the hospital bed and 1 in front of my kids walking around the hospital. Can’t do this anymore it’s too hard . The surgeon told me “ I am sicker then I look “ so at this point I am getting weaker and weaker so the only choice is to remove it . If they were able to get me stable they said “ ok you could wait for surgery “ but now it’s too far gone
So surgery is Tuesday
I have to say I am very scared but I have 4 children to think of and they need me

So now I wait 👼🙏🙏

3timechamp
Regular Member


Date Joined Oct 2009
Total Posts : 489
   Posted 12/9/2017 12:21 AM (GMT -7)   
Your doing the right thing. I'm supposed to have surgery in Jan but not sure if I can wait.Pred is only thing keeping me functioning but on heavy dose.left voice mail with my surgeon today that I might want to do surgery sooner then Jan. I want peace of mind,I want not to be a slave to this dreaded disease. I was Mr Mom for 16 yrs to my 3 kids. During flares then didn't understand why daddy couldn't have a catch. I'm glad all the issues that come with this disease is coming to an end. Put everything in Gods hands. Let go. Let God. You'll be fine

Connor77
Regular Member


Date Joined Jul 2016
Total Posts : 368
   Posted 12/9/2017 12:51 PM (GMT -7)   
Good luck!! Wishing you all the best smile We are here for you if you need more support.
DX left-sided UC 2015, 3 fulminant flares since then
Diagnosed with mycobacterium avium paratuberculosis (MAP) September 2017
Commenced AMAT (rifampin, clarithromycin, clofazimine) November 1 2017
Intolerant to clofazimine, stopped taking
Others: prednisone 10mg, Entyvio every 4 weeks, Low Dose Naltrexone 3mg at bedtime, natural ferments

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15435
   Posted 12/9/2017 1:04 PM (GMT -7)   
Best of luck to you. I had surgery and I am doing so much better. Really a fantastic change from always being sick and worried about toilets, to being how I live now - free of drugs, healthy, no more blood draws and doctors appointments. I know it's difficult to accept surgery as the solution, and no one wants it, but it can be very positive. I hope you have a quick, easy recovery and that you get your health back ASAP so you can do the things you love with your family.

You can read my surgery story if you're interested:
/www.healingwell.com/community/default.aspx?f=38&m=3569886
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.
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