I'm meeting with the surgeon today

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pam222
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Date Joined Jun 2009
Total Posts : 985
   Posted 8/31/2009 6:56 AM (GMT -6)   
I'm nervous
I'm also ready to have it done because I am just getting worse all the time...but I don't know when I will be able to have that kind of time off
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
Back up to 30mg Prednisone UGH, Prenatal vitamin, and Ferrous Sulfate twice a day
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success
3 infusions of Remicade with no success, so next step is consultation with a surgeon 8/31
8/09 colonoscopy shows that the whole colon is affected


Rio in Maryland
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Date Joined Nov 2007
Total Posts : 891
   Posted 8/31/2009 7:36 AM (GMT -6)   
When I was in a severe flare last year I was advised to meet with a surgeon too. I think it's a good idea to meet with them, even it's just to get a better idea about the whole surgery process, and then weigh out your options.
Rio, 33 year old male. Diagnosed with UC in 2006
Azathioprine (stopped), 4800 mg Asacol
VSL#3, Metamucil
Vitamin E enema or Canasa/Mesacol suppository occasionally


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 8/31/2009 7:40 AM (GMT -6)   
my gi doctor basically gave up on me after my colonoscopy. He said just to stop the Remicade and continue taking Prednisone until I have the surgery and didn't see the need to schedule anymore office visits with him.
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
Back up to 30mg Prednisone UGH, Prenatal vitamin, and Ferrous Sulfate twice a day
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success
3 infusions of Remicade with no success, so next step is consultation with a surgeon 8/31
8/09 colonoscopy shows that the whole colon is affected


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/31/2009 7:46 AM (GMT -6)   
Hey Pam, good luck with your visit today. I know it can't be easy to wrap your mind around the surgery, but many here have been very successful with it and have gone on to lead wonderful and healthy lives. Keep us updated on what the doc says, and again...I'll be sending good thoughts your way today.

Carol

Remicade - will have my 30th infusion on September 2 
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 8/31/2009 7:48 AM (GMT -6)   
Thank you. I hope the surgeon has good things to say. I'm really ready to get on with my life
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
Back up to 30mg Prednisone UGH, Prenatal vitamin, and Ferrous Sulfate twice a day
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success
3 infusions of Remicade with no success, so next step is consultation with a surgeon 8/31
8/09 colonoscopy shows that the whole colon is affected


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/31/2009 7:53 AM (GMT -6)   
Pam, it might also be helpful to visit the www.jpouch.com site to get some helpful information. Maybe after visiting with the surgeon you will be able to make a plan for getting some help to take care of the baby etc. I know this might sound way off, but think of all the time you are taking off right now because of the UC; maybe getting it over with and getting on the road to healing might save more time in the long run...not sure if that makes sense or not! 

Carol

Remicade - will have my 30th infusion on September 2 
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


pam222
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Date Joined Jun 2009
Total Posts : 985
   Posted 8/31/2009 7:55 AM (GMT -6)   
Lonie said...
Pam, it might also be helpful to visit the www.jpouch.com site to get some helpful information. Maybe after visiting with the surgeon you will be able to make a plan for getting some help to take care of the baby etc. I know this might sound way off, but think of all the time you are taking off right now because of the UC; maybe getting it over with and getting on the road to healing might save more time in the long run...not sure if that makes sense or not!


Thanks, I'll look.
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
Back up to 30mg Prednisone UGH, Prenatal vitamin, and Ferrous Sulfate twice a day
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success
3 infusions of Remicade with no success, so next step is consultation with a surgeon 8/31
8/09 colonoscopy shows that the whole colon is affected


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/31/2009 8:35 AM (GMT -6)   
I hope your visit goes well. You have so much life left, and I think it would be hard to raise a family struggling with unrelenting UC. Maybe nipping it now is a good plan.
49 year old female attorney, diagnosed UC/pancolitis 1985. 
Asacol maintenance for 20+ years; 
Prednisone & Rowasa for flares. 
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some. 
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16289
   Posted 8/31/2009 9:19 AM (GMT -6)   
Maybe you could give Humira a try? I've seen a lot of people here who have had good luck with Humira. I hope your meeting with the surgeon goes well. I would definitely consider surgery if I were in a nonstop flare.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
Horrible relapse: August 08 - December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
Canasa nightly + Asacol (9/day) + Probiotics + Iron
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/31/2009 9:54 AM (GMT -6)   
I would also maybe try switching to Humira, but go ahead and schedule surgery. Then if the Humira works, cancel the surgery! I wish you a lot of luck.

Also, are you still breastfeeding? I think I've read somewhere that SOME women who flare after childbirth get better after they quit breasfeeding. It didn't work for me (I hadn't been diagnosed yet when I quit, and I quit due to lack of supply) and it could all just be coincidental, but you never know!
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (currently tapering; 12.5 mg).


Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 8/31/2009 1:30 PM (GMT -6)   
Pam,

It sounds really like you are recently diagnosed. I was VERY sick one year ago when I was diagnosed with UC and skipped straight to Remi. I never tried Imuran or 6MP, etc. When the remi stopped working for me in April after being on it for < 6 months, my GI told me to schedule surgery.

Well, I wasn't really ready for it, either. I had talked to a surgeon daily when I was hospitalized. He told me that the only time I "had" to have surgery was if I had "toxic megacolon" so I decided to seek the advice of a new GI doc. I found an "IBD specialist" and he said no reason we couldn't go back and try Imuran (Azathioprine). Well, I am on it now since the middle of June and I am really doing even better than when the Remi was working.

I guess what I'm saying is even though surgery will get you off the meds and people here often say that it's the best thing they could've done, if you aren't ready for it yet physically or mentally, don't let anyone talk you into it, there might be other options!

Good luck!

Jen
Age 35, Diagnosed with UC September 2008
Current Meds:
Azathioprine 100 mgs, Apriso 4 tabs
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 3000 mg per day
Multivitamin
Rite Aid Probiotic
Also tried: Remicade, Asacol, Rowasa, Cantasa, Prednisone 2 times for about 3 months each


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 8/31/2009 1:34 PM (GMT -6)   
What a lovely way to say that Jen. I concur--you're ready when YOU'RE ready, not when your GI has 'given up' on you. I would just be sure to get another opinion from an experienced GI.
Good luck Pam and let us know how it goes!
UC since 1996 (age 20)
Mommy of 2 sweet little girls.

Asacol (12/day)
Azathioprine (175 mg)
Prednisone (60 mg)
Rowasa nightly
Immodium daily
First Remicade 6/22/09 [discontinued 8/12/09, not helping]


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/31/2009 1:37 PM (GMT -6)   
Yes, I agree Jen, it will be her decision; as with all of us and meds vs. surgery. I haven't had to be in the position to make such a decision, so all I can be is supportive to her. I believe I'd pursue other options, but then I only have left sided colitis, not pancolitis. Guess I won't know until I'm faced with it? Sigh.

Carol

Remicade - will have my 30th infusion on September 2 
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 9/1/2009 4:55 AM (GMT -6)   
I believe my Gi said I could not try Humira until it is approved for UC (it must be an issue with my insurance not covering it). He told me he didn't want to do 6MP because it would take too long to work and I am getting too sick to wait for that.

The meeting with the surgeon did not accomplish a whole lot yet, as he is sending the slides from my colonoscopy to an expert pathologist to. The surgeon is not entirely convinced I have UC and not Crohn's, as he said while the whole colon is inflamed, the rectum is not, which is often more indicative of Crohn's. But he did say the bloodwork I had recently makes them think UC more. He just wants to me more sure before talking about surgery. He said I could still have surgery with Crohn's but would have a bag forever. He was a very nice and personable surgeon at least. He also put me back on Asacol. He said sometimes it can not work and then later work and he said I can't just be on Prednisone alone.

So now I wait 10-14 days for the pathology report to find out

Yes, I am still breastfeeding. I don't know if it would help to quit. I have been flaring for pretty much 2 years straight and nothing seems to really have helped much at all. Even on Prednisone, I am bleeding quite a lot and going 15-20 times a day. The urgency is increasing and I can no longer hold it most of the time. I have to run out of stores sometimes if I can't see a bathroom. It is just too much. I have to go to school and an internship like this. I started class again yesterday and had to run out of class several times. I am so worried about what will happen if I don't make it to the bathroom while at school or my internship (which is at court and also requires me to travel sometimes).

I'm also have a lot of issues with the PRednisone dependency. I just can't stay on it. I have too many side effects (high blood sugar, Glaucoma, a lot of weight gain, night sweats, and on and on)
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
Back up to 30mg Prednisone UGH, Prenatal vitamin, and Ferrous Sulfate twice a day
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success
3 infusions of Remicade with no success, so next step is consultation with a surgeon 8/31
8/09 colonoscopy shows that the whole colon is affected

Post Edited (pam222) : 9/1/2009 4:59:56 AM (GMT-6)


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 9/1/2009 7:26 AM (GMT -6)   
Wow Pam, this is rough for you. It sounds like the surgeon is very thorough though, and checking every detail before he performs surgery or even thinks about it. You might want to check back with your GI and ask him again about Humira; sometimes if you are not responding to other meds, the insurance companies will cover it if your doc makes a good case for it. I'm hoping that Humira is approved soon for UC. Take care, hang in there.

Carol

Remicade - will have my 30th infusion on September 2 
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/1/2009 10:22 AM (GMT -6)   
It sounds like you are getting good care, despite your body's being so stubborn.

You might want to consider using adult diapers. I think they would give you needed peace of mind, with the circumstance you describe. You might even find they relax your system just knowing you'll be OK, and you'll have less urgency. I found that would happen even wearing a Poise pad when I was flaring badly.

It took me a long time to learn how to manage with UC. Like never eating right before I had to go somewhere or do something. And making lots of preemptive bathroom visits. Are you doing all that? Sorry you are suffering so, that's a lot of extra stress on you, with so much else going on in your life!
49 year old female attorney, diagnosed UC/pancolitis 1985. 
Asacol maintenance for 20+ years; 
Prednisone & Rowasa for flares. 
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some. 
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 9/1/2009 11:45 AM (GMT -6)   
I don't usually eat before going anywhere, and it doesn't seem to matter how much I eat. There is always something left to come out. I wake up at around 5 or 6 am right now (to pump breastmilk) and I STILL am going no matter what time I have to leave the house hours later. Mostly right now it's a lot of liquid/blood. I'm sure anxiety over it doesn't help. I always go to the bathroom before I leave the house, immediately upon getting somewhere, but it's not helping. Like yesterday I was at the surgeon's office, went to the bathroom before leaving, drove not even 5 minutes to class and almost still couldn't make it into the building from the parking lot. Then I went right before class, twice during class (in an hour) and immediately after class. It's just so ridiculous. Sometimes I will try to go before leaving somewhere and I can't and then I am in the car 2 minutes later and have to go and can't make it back in somewhere. I can't take my baby for a walk because I am scared to be outside on the street without a bathroom. My husband has to take him alone. I haven't done adult diapers because I don't even know that they would hold enough (it's that bad). I never had the issues with urgency until about 2 months ago
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
Back up to 30mg Prednisone UGH, Prenatal vitamin, and Ferrous Sulfate twice a day
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success
3 infusions of Remicade with no success, so next step is consultation with a surgeon 8/31
8/09 colonoscopy shows that the whole colon is affected


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/1/2009 2:54 PM (GMT -6)   
Right after my son was born i went into a horrible flare and i never really came out of it. I was like you never took my son anywhere alone, cause i might have to use the bathroom and what would i do with him then? For the first 2 years of his life that poor baby spent more time in the bathroom than most people do their entire lives!

But i had surgery when he was almost 2 and now he does not have to do that!

Even if you do have crohns and have to have a bag forever, trust me, its not bad, its really rather convienient. I have had a bag for over 2 years, never regretted it once.
Regardless of whether you end up with a jcpouch or a perm ileo, you will be better and able to take care of you family and be happy!

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 9/1/2009 3:43 PM (GMT -6)   
Yeah, I've been at the grocery store with him and had to run across the store to the bathroom, take him out of the cart, get into the bathroom with him...it's difficult. I hate when I'm feeding him or something and I have to run up to go the bathroom and he's crying. I'd be ok with a bag if it had to be that way. At least I'd be able to do things again
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
20mg Prednisone, 2 Asacol 3x/day, Prenatal vitamin, and Ferrous Sulfate 2x/day
3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
Waiting on pathology report to make sure I don't have Crohn's before proceeding with surgery


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 9/1/2009 4:35 PM (GMT -6)   
Your last comment makes me think you might be mentally ready for the surgery
--" I'd be ok with a bag if it had to be that way. At least I'd be able to do things again"

Your surgeon sounds like a good one as well, so good riddance to your GI.

I met with a surgeon a few weeks ago and am planning on getting the jpouch surgery over the winter. I have a one-person (me!) business so I am saving money like crazy to cover the loss of income while I recover. I just want to be done with UC. Remicade bought me some time while I got my mind wrapped around the surgery, and I am ready now. Sounds like you know what you need to do to get your life back.

In addition jpouch.org check out the blogs of people who have had the surgery on jpouch.net. Many have posted pix, bags, scars and all ... I found it a greatly informative site.

Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Achieved almost-remission mid October 2008 (rectum still inflamed). Having surgery in January 2010.

18 Remicade infusions (6 weeks sched: 1st: 7/21/07; most recent: 8/29/09; Current meds & supplements: Lialda, 4 tabs in the morning; Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D; Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Roweasa; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro; Xanax


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/1/2009 5:06 PM (GMT -6)   
pam222 said...
I don't usually eat before going anywhere, and it doesn't seem to matter how much I eat. There is always something left to come out. I wake up at around 5 or 6 am right now (to pump breastmilk) and I STILL am going no matter what time I have to leave the house hours later. Mostly right now it's a lot of liquid/blood. I'm sure anxiety over it doesn't help. I always go to the bathroom before I leave the house, immediately upon getting somewhere, but it's not helping. Like yesterday I was at the surgeon's office, went to the bathroom before leaving, drove not even 5 minutes to class and almost still couldn't make it into the building from the parking lot. Then I went right before class, twice during class (in an hour) and immediately after class. It's just so ridiculous. Sometimes I will try to go before leaving somewhere and I can't and then I am in the car 2 minutes later and have to go and can't make it back in somewhere. I can't take my baby for a walk because I am scared to be outside on the street without a bathroom....

I know many of us can totally relate. It's exasperating! When I'm flaring badly, just the phone ringing would startle me enough to trigger a spasm. I had to let all my calls go to voicemail because I needed to visit the bathroom before I could talk. 
 
And I only ever had to take care of myself.
49 year old female attorney, diagnosed UC/pancolitis 1985. 
Asacol maintenance for 20+ years; 
Prednisone & Rowasa for flares. 
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some. 
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow

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