I'm officially a statistic

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Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted Yesterday 9:04 PM (GMT -6)   
Basic jist of the story is that I came in on Tuesday to see my GI at 8:30am. By 9:10am, he had me in emergency, severe dehydration, malnourishment etc and have been in hospital ever since.

I am now officially a statistic as no UC treatments work for me.

Probiotics - reduced gas, but doesn't do much else;
Fibre - helps with symptoms but nothing else;
Garlic - helps with gas, but nothing else;
Olive leaf extract - great for coughs, but doesn't do much for UC;
Salazopyrin - Doesn't work any more;
5-ASA's - Makes colitis worse;
Colozide - the more I have, the worse I get;
Rectal 5-ASA's - cant keep em in and not effective in proctitis;
Rectal steroids - cant keep em in and not effective in proctitis;
Prednisone - doesn't work any more;
Hydrocort - makes me insane;
Abatacept - works, but trial finished so can't get drug;
Golimumab - trialing, but no luck as yet;
The list goes on.....

So yeah, they are talking surgery now... Bloody wonderful.

Did I mention I am allergic to pain?
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted Yesterday 9:37 PM (GMT -6)   

Well you may learn, as I did, that surgery gives you your life back.  It's not perfect but it beats being chronically ill and finding no relief in 22+ pills per day. 

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


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted Yesterday 9:41 PM (GMT -6)   
What about Remicade or Humira?

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted Yesterday 10:41 PM (GMT -6)   
suebear - I do understand that, it is still a very scary prospect for me. I am 28, single and having a bag is going to make it even harder to find a partner... I am also deathly afraid of surgery as all surgery I have had in the past has gone terribly wrong.

pb4 - We have tried Abatacept and now Golimumab. My gastro team have told me that TNF-a blockers work well for most people, but some people (me) they just don't work in for some reason. They are going to try Remicade before surgery, but they don't think it will work as the GI team lead was able to find out what level of the drug I was actually on in the trial. I am on 100mg and it should be working extremely well by now if it was going to. I want to try Humira, but in Australia, it pretty much isn't an option as it has not passed certification for IBD yet.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted Today 8:00 AM (GMT -6)   
I am truly sorry to hear this...I know you are SO adamantly opposed to surgery. But you can't fault yourself if you need it- you have done everything humanly possible to avoid it. When it's time, it's just time, that's it. God, the last thing you should worry about is finding a partner! Anyone who is bothered by a bag would not be the sort of person you'd want to build a life with, I can guarantee you that. Would you choose a j-pouch? Cause then it'd only be temporary. And honestly, don't you find some measure of relief in surgery? I mean, it'd be over...all the searching for a new treatment, the cramp in your lifestyle caused by active UC, the overall hassle. Well anyway- good luck! Just get yourself as healthy as possible & go from there... I'm sure you're emotions are all over the place right now! I empathize.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
 
 
 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted Today 9:30 AM (GMT -6)   

You don't have to have a bag, you can opt for jpouch surgery which gives you the same functionality as a colon.  I understand your fears, not one prospective jpouch patient has gone into surgery without fear.  Fear of failure, fear of the unknown, fear of pain, etc.  Fortunately you don't have to make a decision today, you have some time to research and get used to the possible idea of change.

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


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted Today 11:24 AM (GMT -6)   
Severin, I'm sorry to hear this. You've fought the good fight. You're a smart guy who looks life right in the face, I know you can get through this. And I've still never heard a j-poucher say they regretted having the surgery.

Hoping for good things for you.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


bap06
Regular Member


Date Joined Jun 2008
Total Posts : 57
   Posted Today 11:27 AM (GMT -6)   
Wish I could do or say something that would help. All I can do is send good thought your way, and hope that everything works out for you. Hang in there.
*Diagnosed 10/07 (6 months pregnant w/ 2nd baby)
*Currently in remission
*Lialda (3 x a day)
*Canasa
*Prilosec
*Calcium, multivitamin, Metamucil, iron


schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted Today 12:12 PM (GMT -6)   

I certainly can relate.  I hope you can find some hope in the future,  It is so hard when you loose that.  I pray for your healing and wish you big hugs...in the meantime, hang in there.

love to all here

 

bob

 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted Today 6:25 PM (GMT -6)   
Severin - sorry to hear about your hospitalization.

Have you considered the BCIR - internal reservoir? This is one I am interested in looking into...

I hope you and your doctors find a solution that works for you. Just think - with surgery - you'll be feeling so much better!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next (3rd) infusion 08/12/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted Today 8:57 PM (GMT -6)   
i am sorry to hear that you have had such a hard time. I really hope you can get some help and get to feelign better.
Surgery (bag or j-pouch) is not a death sentence, it's not the end of your life, so many people get the wrong idea about it, because it is such a big change and for some reason it seems that people with ostomies aren't viewed as right or something. Not sure i explained that right. Truth is, it's going to be the beginning of your life! noone will know unless you tell them, and it will not keep you from doing anything that you want to do! it will allow you to do things you can't do now! and yeah, you might get annoyed with it, or bummed everyonce in a while, but that will be temporary. For instance, last night me and a group of friends went to Hickory Alive (it's like an outside concert thing) well unless you eat in a restuarnt, you would have to use a port a potty, and i was thinking, it is going to be sooo annoying if i have to empty this thing there, but then i thought, you know without this thing, i wouldnt' be ABLE to go at all!!!
I have, like so many others, finally gained back all that i have lost, oddly enough by losing a piece of my body!
So anyway, that was the long way around to tell you that i know surgery is scary and i know you are freaked out, but i promise it will not be as bad as you think, and that you will be happier!
good luck and i will keep you in my thoughts and prayers

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted Today 11:12 PM (GMT -6)   
Best of luck with the surgery...in no time you'll be eating whatever you want and taking only vitamins vs 22 pills !

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/20/2008 10:45 AM (GMT -6)   

I'm sorry, Severin. But at least you can say that you pretty much tried everything to avoid surgery. I'm afraid of the surgery and the bag, too!

Good luck and keep us updated!


Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (2nd infusion 06/26/08), 2.4 g Lialda, 1 Forvia, 9 Colazal/day
*exploring the option of surgery
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 7/20/2008 11:31 AM (GMT -6)   
Severin,
Don't give up hope on Remicade, it works well for lots of people. I would meet with a surgeon if you haven't yet and start discussing any concerns you have with them and write down any questions you have for them and look for the best surgeon in your area. I need to do it, too. Maybe you could meet some j-pouchers in your area or seek some counseling before surgery to help you deal with things, and remember that we are always here if you need to vent. I totally understand your fears and concerns about surgery.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 474
   Posted 7/20/2008 5:01 PM (GMT -6)   

Severin - Im very sorry to hear that.  I really wish something would work for you. I know completely how you feel. I have been flaring for 5 years now and life has been miserable but I refuse to give up! And nor should you.

You say Abatacept worked. So, why cant you stay on it? I am also on the trial, and it is still running. Infact, they are still recruiting. I was told that all trial participants will continue to receive the drug until it gets a license as a treatment for UC.  Maybe you should look into this.

Hope you feel better soon

Take care 


Abatacept Trial since Feb 2008 (Maintenance Period)
Back on Pred - 3mg - Steroid Dependent :-(
Azathioprine 150mg
Colazide x3
Actonel 35mg, EPA Fish Oils
Predfoam Enema - Had to stop as not allowed during trial
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 7/20/2008 5:25 PM (GMT -6)   
Kam - Sadly, the trial dose and frequency was not enough to really help me more then stopping me getting any worse. Abatacept is not an option as my GI can not control the dose and frequency of the drug delivery.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 474
   Posted 7/21/2008 6:54 AM (GMT -6)   

Severin - OK, It is a shame that they cant be more flexible with the dose.  Where you on prednisolone when you went onto Abatacept?  If you tapered, did your symptoms worsen even though you were on Abatacept?  As, since I started tapering my pred to a very low dose I think I am starting to flare :-(   Did you experience this?

Take care


Abatacept Trial since Feb 2008 (Maintenance Period)
Back on Pred - 3mg - Steroid Dependent :-(
Azathioprine 150mg
Colazide x3
Actonel 35mg, EPA Fish Oils
Predfoam Enema - Had to stop as not allowed during trial
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 7/21/2008 5:35 PM (GMT -6)   
Kam - Yes, you need to toy with the prednisone quite a bit. Some weeks you can get away with tapering and some weeks you have to put it back up by a mil or two.

Abatacept is the only reason I was able to escape my steroid dependence, but it did take us nearly a year to get me off of the steroids completely. From 15 to 0 was a very slow taper, sometimes only 1mg per fortnight, then would have to wait for things to settle down again.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/21/2008 6:39 PM (GMT -6)   
Sorry to hear that uc is forcing your hand.

I may be off base, but in a couple of posts you've mentioned that you're concerned an ileostomy will hamper your search for a partner. I'm a bit older (a bit) and if experience is any guide, I've found that the older men get, the less concerned they are with superficialities and the more willing they are to settle down. If a permanent ileostomy is the "worst case scenario" I don't think it would ruin your chances of landing a partner. . . and maybe having control over uc will allow you to hit your stride at just the right time.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/21/2008 10:04 PM (GMT -6)   
someone posted this on another board, and what seconder just said reminded me of, you never see a personal ad that says, "wanted woman with good personality, nice eyes, must NOT have an ileostomy" I honeslty dont' think that a mature man would care.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 7/21/2008 11:41 PM (GMT -6)   

Severin, it is a shame that the treatments haven't worked for you. They only helped Bratcat up to a point and then she would flare again. And she couldn't use prednisone as a means to get her out of flares indefinitely. Surgery was very scary for her (and us). There is always lots of what ifs and what will be's. But going in with a positive attitude instead of a defeatist attitude will help alot. When you are ready to accept that surgery may be the right answer for you, try to embrace it (as best as possible). Look at it as the beginning of a new chapter in your life.

I hope you have a good support system (family, friends). I think that is very important. Lean on them during this time and after surgery. It won't make the pain go away or the healing go quicker, but they can shoulder some of the anxiety and frustrations you will have. And they will be able to give you that push or pull when you need it.

As for pain, luckily there are pain meds! And the pain won't last forever. Bratcat had an epidural in the hospital. Came home with darvocet (percoset made her almost faint in the hospital). She only takes one pill at night to sleep (not every night). Sometimes she takes tylenol during the day.

 


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 7/22/2008 6:08 AM (GMT -6)   
Thanks seconder and summerstorm - thanks for the reminder. I know its true, I just have trouble giving up on anything. You are right, at least having the surgery will let me go out and do stuff and at least stand a chance of meeting someone nice.

Bennie - cheers for the note. I got the news today that surgery is the only option. The risks involved (due to the severity of my UC) are pretty nasty, so we are gunna try cyclosporin to bring the inflimation under control long enough for them to operate. I also need to put on another 6kg to get back up to a safe weight so they will do the operation. I came into the hospital at 47kg and am now up to 34, so hopefully I can get the weight on and do this. I think I have come around to the idea of surgery - its still scary as all hell.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 7/22/2008 6:32 AM (GMT -6)   

My brother felt exactly the same as you. He fought with his UC for 4 years always rejecting surgery. He flared a lot of this time and was hospitalised on numerous occasions. We as a family were all telling him to have the surgery to get his life back but being in his 20's and single like you he didn't want to do it. Eventually at the age of 28 he had the surgery, that was 7 years ago. He didn't opt for j-pouch so has the bag. The only regret that he has now is he didn't do it sooner. He can't remember what it was like to be ill. He is now married with children (met his wife after surgery) and lives life to the full. I was diagnosed with UC 2 years after he had the surgery and although my disease is not as bad as his was it does seem to be getting harder to control. If it ever came to it - yes, surgery would be scary for me but at the same time I can see how well he is.

Best wishes to you.


32 year old female
UC diagnosed 2001
Asacol 6 per day
Azathioprine 100mg started 4/08
Steroids 5mg per day


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/22/2008 10:39 AM (GMT -6)   
like tums is saying, after a while you do forget what it's like to be ill, i haven't gotten to that point completely yet, i have alot of time to make up for, lol. But i have gotten to the point where i usually forget i have the ostomy.

milkman
New Member


Date Joined Jul 2008
Total Posts : 19
   Posted 7/22/2008 12:28 PM (GMT -6)   
Surgery is scarey. we are in middle of it 23 year old daughter just has it 2 weeks ago still in Hospital but thing are starting to work.Talk to people who had it done,its not easy  its been a tough 2 weeks but you  need to look long term and what is good for u.I am sure we are far from being over  froms ups and downs.We tried Humira instead of remicade, GI doctor what shocked it didnot do anything.Surgeon told us after surgery her colon   was severely diseased. Knowledge is power.Good luck
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