Had my colonoscopy today - didn't get any good news

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geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 4/29/2009 6:17 PM (GMT -6)   
Well, I had my colonoscopy today. I was sedated, but it still hurt so bad. cry Luckily because of the conscious sedation, it seemed like it was over quickly. Then the dr came out with the bad news. He said my colon looks even worse than it did last summer when my flare-up first started. He said I have two options now. I can get on Imuran in combination with Remicade - but that the combination of the two drugs greatly increases my chanced for getting blood cancer. The other option is surgery.
 
Here's the thing though. I'm supposed to be going to Hawaii one week from Sunday. He gave me Prednisone to see if that will help with the symptoms short-term so that I can still enjoy my vacation. But my thought is, am I wasting a week of paid vacation time by going to Hawaii? Should I cancel my trip and use that paid vacation time for surgery? Or should I enjoy one last hoorah before going under the knife? I will still have some vacation time left afterwards. How long will I be out of work after surgery?
 
Oh, and as a side note, can I just share how thrilled I am that I will be missing yet another summer? I missed last summer because the flare-up was so bad. Now if I have to have surgery before the summer even starts, I'll be recovering then going in for stage 2 of the surgery this summer. Speaking of, can I go swimming with a bag on me after stage 1?
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg (Aug 2008), increased to 7.5mg/kg (March 2009), increased to 10mg/kg and increased to every 6 weeks (April 2009) - 7 infusions so far, next infusion on 5/28 continuing every 6 weeks; Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate)
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis, Probiotic Align
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09) (will try again once I can eat normally again)
Current Status: April, 2009 - suffering another flare-up :(


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/29/2009 6:23 PM (GMT -6)   
I'm sorry to hear you got sucky news. :(

As for whether or not to use your vacation time to go to Hawaii, do you have short term disability through work? Definitely look into that, as it might make your decision of whether to go to Hawaii easier! Does prednisone usually work for you? If it does, I'd be really tempted to go and enjoy yourself. You deserve it!

So it kind of sounds like you've decided to have surgery? At any rate, best of luck.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16732
   Posted 4/29/2009 6:26 PM (GMT -6)   
I am sorry it was such bad news. I hope you can manage without surgery but if you do end up having surgery, at least you know that will be the last of your UC worries. Maybe the pred will put you into remission and things will get better? I think I would want to go on my vacation even with the fears. I think if it were me I would see how I am feeling. If I saw improvement, I would go to Hawaii. If I didn't see any improvement, maybe I would save the vacation time for when you will need it. After surgery there wll be plenty of time for vacations and no worries about gas, bloating, pain, accidents... Goodluck & enjoy your trip if you decide to go. I hope you se improvement quickly.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
December 08 - Began treating with Asacol 400mg (9 a day)


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 4/29/2009 7:02 PM (GMT -6)   
I'm so sorry about the bad news. At least you won't have to be on drugs any more after surgery. No more pred ever!
31 yr old female currently breastfeeding (weaning so I can start 6mp)
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 4/29/2009 7:27 PM (GMT -6)   
Sorry about the bad news... I have a colonoscopy coming up on May 20th and fear the same news...I have a new GI now and they want to have a look before starting me on 6MP or Immuran... They werent ready yet for Remicade but it is possible that after they see inside they will change their mind... I really do not want surgery but if it is my only alternative I guess there is no choice...

If you are heading toward surgery it may be better to postpone to next year at this time....if things go as planned for you, you will have all stages of surgery done and probably be 100% for the trip - may be a lot easier to enjoy....?



BTW I like your signature line...I am going to have to change mine to that style :)
34 yr old male. UC for 14 years. Started left-sided, most recent scope shows pancolitis. 30mg pred (as of 2/01/09), 12x pills Asacol per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Spinach and sunflower seed diet (moderated recently due to kidney stones). Multivitamin. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!) "I poop in the woods because I can"


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 4/30/2009 8:41 AM (GMT -6)   
Thanks for all of the responses. It's always so comforting hearing from people on this message board, because you all know what I am going through. My boyfriend, friends, and family are very supportive. But they just cannot really identify with what I'm going through. I am so thankful to have found this board.

I think I have decided to give the pred a few days to see if it helps the symptoms. If it starts to help things, I will go ahead and go on vacation. Then when I get back, I will meet with the surgeon and go from there.

If the pred does not do anything to help, then I will cancel the trip and get the surgery scheduled. There's no reason to go on vacation if I'll be stuck inside near a bathroom the whole time. Hopefully that won't be the case though. See, my brother is in the Navy and is based in Hawaii only until July. He is flying my parents, sister, and I down there for vacation. So I'd hate to cancel on him. And even if I were to postpone the trip, he would no longer be there once I'm able to make the trip. So it's now or never. (Well not never - my boyfriend and I can go someday I'm sure, but it's now or never to go with the family and visit my brother.)

Fingers crossed that the pred can get me through the next couple weeks!
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg (Aug 2008), increased to 7.5mg/kg (March 2009), increased to 10mg/kg and increased to every 6 weeks (April 2009) - 7 infusions so far, next infusion on 5/28 continuing every 6 weeks; Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate)
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis, Probiotic Align
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09) (will try again once I can eat normally again)
Current Status: April, 2009 - suffering another flare-up :(


UC_Dad
Regular Member


Date Joined Nov 2008
Total Posts : 33
   Posted 4/30/2009 9:39 AM (GMT -6)   

I am sorry to hear about the bad news and what seems like limited options. I feel your pain as you deal with this. I have been placed on 6mp for now 6 months with little response & the need to stay on 40mg of prednisone which to me means only one thing, once my liver goes toxic it is Remicade time.

Surgery is starting to sound better after hearing your doctors concerns about blood cancer. Hopefully the Pred works for you so you can enjoy some Hawaiian Sunsets with your family before having to make this tough decision.

Good luck and hopefully you can some relief, can go to hawaii and relax. You and your body needs it.

Take Care and keep us all posted.


Dx'd June 08 severe UC (pancolitis), symptoms for years before dx
30 yrs old
Meds
Asacol 400mg x 12, Prednisone 40mg tapering off now
Prednisone 40mg again
6-mp 150mg, Canasa
Probiotics x3/day, Ominvite Multivitamin x3/day
 


Deacon Blues
Regular Member


Date Joined Oct 2006
Total Posts : 312
   Posted 4/30/2009 12:26 PM (GMT -6)   
Sorry about the news!! It definitely sucks when we are lacking being in more control of our lives. Sounds like you have been through alot, you will get through this as well. It is so hard seeing the good sometimes, but maybe, maybe it is good to get this done so that next summer your options may be wide open...fingers crossed :-) Hope the pred works!!!!!!!!!!!!!!!
Db
Diagnosed with UC in Dec of 1999
PANCOLITIS-mild to moderate (remission for 2 years +!!??...i don't know...I am just SO happy when I have a good day!!)
3X400mg Asacol 3x per day
Mild flares a couple times a year
46 yrs old


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/30/2009 1:54 PM (GMT -6)   
Sounds like you have a good plan. It's tough for us to say what to do, because only you know whether you can still have fun when you are trying to manage the flare. It would be tough if everyone plans to spend all day at the beach, like my friends and family would... but there are lots of other things to do there! Are you going to Honolulu, then?
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone 40mg, down to 10mg so far so good... Humira denied, started Remicade 4/12 and doing great~ 


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 4/30/2009 2:14 PM (GMT -6)   
Thanks UC_Dad and Db. My fingers are definitely crossed that the pred works at least for the short term so I can enjoy myself. And you are right Db, by next summer, I will be good as new. :)

Peety - yup, we're flying into Honolulu. We'll be staying with my brother, but I'm not sure what city/town he lives in. I know for sure we are going to go to Pearl Harbor one day. I'm not sure what else he has planned for us. The hard part will be the night life. My sis just turned 21 yesterday, and my brother is quite the life of the party. And even my parents enjoy a few drinks when on vacation. I'll probably be the only sober one at night - ordering waters and virgin daquaries. Oh well, I'll be on a beach in Hawaii. How can I complain??
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg (Aug 2008), increased to 7.5mg/kg (March 2009), increased to 10mg/kg and increased to every 6 weeks (April 2009) - 7 infusions so far, next infusion on 5/28 continuing every 6 weeks; Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate); Prednisone 40 mg daily
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis, Probiotic Align
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09) (will try again once I can eat normally again)
Current Status: April, 2009 - suffering another flare-up :( Surgery may be my next option.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/30/2009 2:21 PM (GMT -6)   
Well, since you'll be the only sober one, at least you can collect blackmail stories on the rest of your family! :)

I'll keep my fingers crossed, too, that the pred works and you have a fantastic time in Hawaii!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 4/30/2009 4:06 PM (GMT -6)   

The beach in Hawaii is definitely wonderful and worth the trip.  My sons sent us there about 3 years ago just North of Honolulu for our 45th anniversary.  I always wanted to go there and was not disappointed.  My IBS (not diagnosed with UC then) acted up one day when I ate something I knew I should not have.  Be careful - stick to what you know about your body, etc.  There are very nice bathrooms in the area and even if you have to stay at your brother's a couple times it is still worth the trip.  I lived on Imodium and Pepto Bismal and even enjoyed a Luau.

Hope you have seats on plane near the bathroom.  I did and it worked out fine.

HAVE FUN!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 
75mg. 6 MP added on 4/8/2009 - waiting for CBC and Prometheus tests
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/30/2009 10:00 PM (GMT -6)   
Uh oh, know what you are getting into at Pearl Harbor. Once I faced a very long line to get in. Then you have to take a ferry over to the actual site of the sunken Arizona (which has no bathrooms), then wait for another ferry to get back. Not to cause anxiety but I know I would want to know what to expect! I would not do it if I were flaring, the anxiety would make me too miserable.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone 40mg, down to 10mg so far so good... Humira denied, started Remicade 4/12 and doing great~ 


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 5/1/2009 7:48 AM (GMT -6)   
Oh my, thanks for the heads up about Pearl Harbor, Peety. I would have had no clue. I'll definitely gage how I am doing that day before committing to joining the family on that tourist trip. Might be a good day to just sit out in the sun with a good book by myself instead.

Thanks Elaine, I'll definitely be careful and stick to what I know about my body. No new foods or crazy drinks or anything. I'm so looking forward to the trip!

Fruitgirl - good thinking about the blackmail stories, hehe. I'll be sure to snap many pictures too. :) Oh the ammo I can collect while I'm there, ha ha! ;)

As an update - after a few days on pred, I seem to be doing a little better. Mornings are still rough, but by the afternoons, I feel like a new person. So hopefully after a few more days, it'll start having an effect on my mornings. I have 9 days till take off!
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg (Aug 2008), increased to 7.5mg/kg (March 2009), increased to 10mg/kg and increased to every 6 weeks (April 2009) - 7 infusions so far, next infusion on 5/28 continuing every 6 weeks; Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate); Prednisone 40 mg daily
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis, Probiotic Align
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09) (will try again once I can eat normally again)
Current Status: April, 2009 - suffering another flare-up :( Surgery may be my next option.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 5/1/2009 7:50 AM (GMT -6)   

about Pearl Harbor.  We went there three years ago.  The site is great to visit but I agree I would not do the boat ride again - anxiety, etc.  I am the wife of a retired Army - very Patriotic, etc. and WE were not so impressed by the actual site of the Arizona.  Go there but plan to skip the ferry ride if you feel you should.  It is a very short trip and stay out there but not so much to miss. They have headsets to tell the story of Pearl Harbor and very nice bathrooms at the museum.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 
75mg. 6 MP added on 4/8/2009 - waiting for CBC and Prometheus tests
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 5/1/2009 7:55 AM (GMT -6)   
Thanks for the info, Elaine. That's good to know. I can at least enjoy the museum while the fam takes the ferry out. I'll send my camera along with them so I don't miss anything, lol.
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg (Aug 2008), increased to 7.5mg/kg (March 2009), increased to 10mg/kg and increased to every 6 weeks (April 2009) - 7 infusions so far, next infusion on 5/28 continuing every 6 weeks; Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate); Prednisone 40 mg daily
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis, Probiotic Align
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09) (will try again once I can eat normally again)
Current Status: April, 2009 - suffering another flare-up :( Surgery may be my next option.


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 5/1/2009 10:35 AM (GMT -6)   
I am still stuck on the blood cancer thought? I have never heard of the drug combination you are on causing it....perhaps I am uninformed. Colon cancer, I get and the other laundry list of side affects are known to us all, but blood cancer?
If surgery is your best option, you will do what you need, and the beach in Hawaii sounds fab. Enjoy yourself.
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 5/4/2009 7:46 AM (GMT -6)   
My update - I'm calling my dr today to tell him I have decided on surgery. I'm done with this. Pred is not helping. Still have pain, still have some blood, still have urgency. I'm 90% sure I'm cancelling my Hawaii trip. I just think it'll be more torture to be sitting in my brother's apartment not being able to do anything, than it would be to just not go altogether.

As it was, this past weekend, I went to the grocery store with my boyfriend just so I didn't feel like such a home-body invalid. I lasted 40 minutes before I had to bail on him and run to the bathroom. I was there for 20 minutes while he finished shopping and checked out. Then when I got home, I was so wiped out I slept for two hours. So yeah, if that's any indication, I'll have a terrible time on vacation. :(

So it looks like vacation is off and surgery will be my next adventure.
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg (Aug 2008), increased to 7.5mg/kg (March 2009), increased to 10mg/kg and increased to every 6 weeks (April 2009) - 7 infusions so far, next infusion on 5/28 continuing every 6 weeks; Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate); Prednisone 40 mg daily
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis, Probiotic Align
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09) (will try again once I can eat normally again)
Current Status: April, 2009 - suffering another flare-up :( Surgery may be my next option.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 5/4/2009 8:57 AM (GMT -6)   

Sometimes in life priorities - choices - are not easy.  Anyway, you have many years to go to Hawaii again if you wish and enjoy it more!

Sorry you have to have surgery but sounds like you are getting ready for it mentally and certainly physically.  I am 69 and will never have surgery unless I have to to save my life - but that is just me!  If younger, things would be different.

Good luck and hang in there!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 
75mg. 6 MP added on 4/8/2009 - waiting for CBC and Prometheus tests
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/4/2009 9:11 AM (GMT -6)   
OMG, your quality of life will vastly improve after surgery that you will wonder why you didn't opt for it sooner! Wishing your best. Make sure you get recommendations on your CR surgeon.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 5/4/2009 9:53 AM (GMT -6)   
Elaine - You are right. I'll have plenty of time to go to Hawaii later in life. And I'll be healthy enough to enjoy it, too. :)

Suebear - I am definitely looking forward to a better quality of life. While I know it's going to be a rough road ahead, there's a light at the end of the tunnel. I'm actually a bit excited knowing I'll be UC free! :)
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg (Aug 2008), increased to 7.5mg/kg (March 2009), increased to 10mg/kg and increased to every 6 weeks (April 2009) - 7 infusions so far, next infusion on 5/28 continuing every 6 weeks; Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate); Prednisone 40 mg daily
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis, Probiotic Align
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09) (will try again once I can eat normally again)
Current Status: April, 2009 - suffering another flare-up :( Surgery may be my next option.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/4/2009 10:13 AM (GMT -6)   
I'm sorry that pred isn't working and that you're canceling the Hawaii trip. But, you can look forward to going there (or to somewhere else even more fabulous) and enjoying yourself to the max once you've had surgery and are recovered! I wish you the best of luck with surgery and look forward to hearing updates from you as you go through the process!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16732
   Posted 5/4/2009 4:40 PM (GMT -6)   
I am sorry you aren't feeling better. You will be much happier and healthier after the surgery. It will be a long recovery but I am sure the time will fly by. Better off waiting to go to Hawaii than going and feeling like hell the whole time. Goodluck and please let me know when you are having surgery.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
December 08 - Began treating with Asacol 400mg (9 a day)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/4/2009 4:55 PM (GMT -6)   
Trust your instincts. Sounds like you have found peace with this decision.
And commit to treating yourself when you are healed.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 5/4/2009 5:02 PM (GMT -6)   
Hi Gemini sunset,

I'm so sorry you're not improving and I will pray that you do.

As you know the good news is you have UC not CD or both, severe UC although horrible at the very least, is actually curable and CD is not...just trying to bring up some positives :-) .
Please find a surgeon that has performed 1000's of cases and ask them point blank what their complication rate is and if they would put it in writting...with surgery experience is critical especially when a problem occurs during a procedure and it also may prevent many other issues from occuring in the first place.

I hope you are feeling better in no time and soon 100% UC free and for the rest of the summers of your life!


Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3-4X per week
Curcummin and Probiotics/Rueteri.
Bowel Soother and IntestiNew, Fish Oil, Calcium/Mag/Zinc, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Could never tolerate artificial sweetners
I try to excersice/swim daily
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*

Post Edited (bbc) : 5/4/2009 7:49:47 PM (GMT-6)

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