What should I do?????

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feelfine
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/28/2008 12:10 PM (GMT -6)   
been in two hopsitals for about two weeks on cyclosphorone and predesone IV.

I have been on cycloshoproine for about 5 days.

Lilttle improvement but still blood and not too much form.

I have lost weight since I been in the hopsital still losing

doctor says I have a very sick colon and I should decide in a day or two on surgery.

should I give the cylcosphorine another two days? They say give it a week

Thanks
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/28/2008 12:23 PM (GMT -6)   
Feelfine, have you talked with a surgeon yet? If not, go ahead and do that.

I certainly can't help you decide what to do, that's much too personal a decision. But the earlier in the week you have a major surgery, the farther along the recovery trail you'll be when you get to the weekend, when hospitals are usually understaffed. Also, they may need to feed you through your veins for a few days to get your system up enough for surgery. Talk this all over with your surgeon before you make a decision.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


feelfine
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/28/2008 12:30 PM (GMT -6)   
I will talk to the surgeon. Luckily I am in good shape to get it.
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5133
   Posted 1/28/2008 12:51 PM (GMT -6)   
So you are starting to see improvements which is good....what's another 2 days. My last Cyclosporine IV treatment took me a few days longer than the first time to see any response.

Are you using steroid enemas? and have you done a stool sample to check for bacteria and parasites?

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


feelfine
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/28/2008 1:14 PM (GMT -6)   
you're right I'm giving it two days for it I am using enemias and they are taking stool samples

Thanks
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5133
   Posted 1/28/2008 2:11 PM (GMT -6)   
Feelfine,

I know that you want to get out of the hospital ASAP so even 5 more days might be worth it.... if you have surgery I would think that you would be in there for at least another 10 days or so.

I know that I wrote this earlier but if I had to do it all over again I would have had surgery the first time that I went in the hospital for Cyclosporine. You don't need a colon to live a normal life but it is nice to have a colon.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 1/28/2008 2:25 PM (GMT -6)   
Let us know what the surgeon says.

I personally would be very interested in surgery if I was ever to be hospitalized for my UC. Like Keith said - a colon is nice, but a quality life is nicer!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 1/28/2008 3:17 PM (GMT -6)   
feelfine, from what you've written, you've only recently been diagnosed with UC so I thought I'd offer a different opinion to those mentioned earlier. 
 
I would personally delay having surgery until I have exhausted ALL other options and given them enough time to work. 
Though surgery should 'cure' you of UC, there are no guarantees that everything will go smoothly and other complications post-surgery may arise down the road.  This is a very personal decision to make but I would advice that even after speaking with your GI specialist and a surgeon, get second opinions from another surgeons and GI specialists about the way forward.
I've dealt with several GI specialists and found that each one offers somewhat different solutions to the issues we're dealing with.
 
All the best.
Rio, 31 yr old male - diagnosed with UC in 07/2006.
 
Alternative therapies for several months (SCD, ayurvedic treatment, VSL#3): didn't work and became anaemic. Canasa, 2 daily: remission for a month then flared-up.
07/07-11/07: 4800mg Asacol (6 x 400mg, twice a day) & Aloe Elite.
Completed first (6 week) tapered course of Pred in 10/07, flaring up since coming off it.
11/07: Switched from Asacol to 12 x 750mg Colazal (3 weeks on it and symptoms got worse)
12/07: Asacol 4800 mg, Started Azathioprene 175mg, Prednisone 60mg - taper.


feelfine
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/28/2008 4:22 PM (GMT -6)   
Thank you the problem is my colon is severly sick and I don't have many options. I know I have been recently diagnonosed but my health is not getting better.

I am losing blood I need to get a blood tranfusion today.

I believe I have no other choice.

Thanks
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30830
   Posted 1/28/2008 10:06 PM (GMT -6)   
If I were in (what I perceive to be ) your situation...I'd have my colon removed after doing the med course they wanted me on for possibly one last time.

There's a time to just get on with life rather than trying to beat a dying colon into life.

Definitely do the talk with the surgeon if there're no other med options left for you.

It's been a rather tough go for you for a while. Scary as it might be for us to hear another one of us has gotten to the point of considering surgery, I see it as an option for renewed life.

You will recover. I've not heard anyone on this forum state they regret the decision to have the surgery. That alone gives me incredible comfort.

Let us know the outcome.

Thoughts with you,
quincy
*Heather*Status: mini flare Dec 28... tapered to every second night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


UMDTerp2001
Regular Member


Date Joined Sep 2006
Total Posts : 246
   Posted 1/28/2008 10:06 PM (GMT -6)   
I'd have to agree with Rio in Maryland on this, although it is a personal decision. I have had UC or Crohns now for about 2 years and had a tough time getting my first flare and following small flares completely into remission. I too was hospitalized losing 50+ pounds and had to get two units of blood, this time last year, so I can relate how tough things can be when all you want is relief. The thing to consider is whether you are willing to battle with this and try the different medications out there that can help you achieve remission. None work overnight but the right combination or type might be your ticket to getting healthy again. Of course no one wants to take medication but it's a tradeoff from being extremely ill. I had thought about surgery while I was very sick and a few times very seriously, but luckily with the right meds and keeping my stress level down I feel I have reached a pretty decent state of remission. Also surgery does cure it I think in most cases but there may be complications and setbacks with that route too that you will want to learn about. Good luck with your decision and hope you are feeling better soon!



 
 
__________________________________________________________________________________
- 29 y/o professional male residing in Northern Virginia
- Indeterminate UC Diagnosis - April, 2006 - Symptoms were sudden and drastic - with appearance of fistula now testing for Crohns
- Completed 3rd Prednisone taper on 4/13/07 - Tapered from early January through mid-April after being hospitalized from a bad flare with anemia & severe joint pain.
- Currently in remission and enjoying life again since getting out of the hospital in early Jan 07' from a nasty flare
- 4 Colazal/day, Multivitamin, Fish oil & Primal Defense Probiotics
- Enjoy the outdoors, relaxing and spending time with family and friends

Post Edited (UMDTerp2001) : 1/28/2008 8:13:55 PM (GMT-7)


feelfine
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/28/2008 10:42 PM (GMT -6)   
tghanks again i am getting two units of blood now

the good news i haven't had too many flares today so i will give it another day on the meds
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5133
   Posted 1/28/2008 11:03 PM (GMT -6)   
Feelfine,

If you decide on surgery make sure that you are getting the best surgeon possible....ask around the hospital for some input from the nurses and your GI. Interview your potential surgeon too. Ask for references from some of his/her patients.... make sure that you talk to some of the patients who have had complications, not just the ones that had perfect results. The surgeon that I am probably going to use insisted that I talk to some of his patients, especially the ones that had complications from the surgery. He also told me all of his statistics from his past surgeries.

Are you in a good hospital? It makes a huge difference if you are in a great hospital for Digestive Disorders 
http://health.usnews.com/usnews/health/best-hospitals/search.php?spec=ihqgast& that was a link for the top 50 Hospitals in the country for digestive disorders.

--Keith


DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 

Post Edited (ks1905) : 1/29/2008 5:46:18 AM (GMT-7)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30830
   Posted 1/29/2008 3:01 AM (GMT -6)   
feelfine...great to hear you're doing somewhat better! Hope it continues.

Keith....awesome information to have especially when one has time to do the research.

q
*Heather*Status: mini flare Dec 28... tapered to every second night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


feelfine
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/30/2008 1:16 PM (GMT -6)   
I'm feeling bettter but I'm still getting blood when I go so I'm worrying I will loose blood again

I might not have a choice but to have surgery
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 


TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 1/30/2008 1:38 PM (GMT -6)   
Do you have anyone to talk to about the stress of this decision? It seems like you have medical advice, but what about emotional consolation? If it was me, I'd be terribly upset! Good luck with this and know that you have people online with good thoughts for you.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5133
   Posted 1/30/2008 7:33 PM (GMT -6)   
Feelfine,

I still bleed for a some time after I got out of the hospital but it wasn't too bad, a few months later it was gone. From my expierence I would be more concerned for urgency and if you are starting to see your BMs form, that's when I knew I was on the road to recovery. It will be a few months before you are in remission, you need to be patient. This is what I expeienced with both of my Cyclosporine treatments.

If you chose to go for surgery I would suggest doing it in the middle or beginning of the week.... Most of the doctors & surgeons have the weekends off and the residence will care for you. And there are not as many pain management people on staff over the weekends. My roomate in the hospital suffered from this because he had emergency surgery on a Friday.... He was in pain all weekend long and not receiving enough pain meds.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


feelfine
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/30/2008 8:41 PM (GMT -6)   
Thanks I will not go for surgery I will tell my doctor tomorrow and stick with the meds.

I am going less seeing some less blood and little stool formation but like you said it takes time.

Thank you again.
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5133
   Posted 1/30/2008 8:49 PM (GMT -6)   
Feelfine,

I was just telling what my experience was; you need to make the decision for yourself. I would suggest asking the GI what you should expect from your current medical treatment (Cyclosporine). Your Colon is probably very ill right now and it will take a long time to heal.

If it was up to me and I was in the hospital I would go for the surgery because it is a cure. I was planning on that last October when I went into the hospital but I hadn't met with the surgeon yet.... They hooked me up to Cyclosporine when I first got in to the hospital and I met with the surgeon a few days later but during that meeting he told me that there is a slight increase in the chance of J-pouch leakage from being on Cyclosporine for the 2nd time and he doesn't accept insurance for the surgery. So I held off on the surgery for the time-being but I still wish the first time when I went in the hospital that I had surgery in 2005.

Ask lots of questions and take notes. I always found it very helpful to do that.... I would have a list of questions made up for my GI each morning when he came into visit with me.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


feelfine
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/30/2008 9:32 PM (GMT -6)   
I will ask them about the treatment when I leave. So because you had allot of cyclosphorine they said they would be complications?

Too bad.

Thanks again.
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/30/2008 9:48 PM (GMT -6)   
feelfine - first, I hope you are feeling better. second, whatever you decide, don't be upset with yourself. listen to yourself on this and try to step back a moment and just figure out how you feel, if you are up for that. in my opinion, you have 3 options:
a) not have surgery right now
b) have surgery while in hospital right now
c) schedule surgery for sometime in next week or two, but not as an emergency surgery

whatever you decide, know that the people you love - and who love you - will support you. there is no wrong/right answer, so try to take some deep breathes and just think this through a bit. either way, I am certain this will all work out, so hang in there. everyone just wants you to feel better and be well, and the good news is that you will feel better and get better, either from meds or from surgery, so either way this will improve.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5133
   Posted 1/30/2008 9:49 PM (GMT -6)   
Not really it just slightly raised the chances of pouch leakage. Because I was on Cyclosporine for the 2nd time; if i knew it a head of time I would not have had opted for Cyclosporine when I went into the hospital but it is not like you can undo it; so I decided to stay on the current course of treatment and do some research on the surgery and the surgeon that I wanted to use. I am better prepared now when I go in the hospital next time. The other thing is that most of the surgeons at the hospital that I was at do not participate in any insurance program. My next step is to figure out my insurance situation so I can be covered for the surgeons bills.... (it is possible) but I want to "get all my ducks in a row" first so I am not stuck with paying out of pocket for the surgeon's fees.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


feelfine
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/31/2008 8:59 AM (GMT -6)   
Hi. I decided not to have surgery. I will work this out. I know it will take a long process to heal but I am ready to do it.

Thanks
34 just diagnosed with UC
 
on Colazol 9 pills a day
 
4 times a day Predocine
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30830
   Posted 1/31/2008 1:26 PM (GMT -6)   
Any decision is a good one...and you can always change it later if needed.

q
*Heather*Status: mini flare Dec 28... tapered to every second night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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