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PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/22/2009 1:46 AM (GMT -6)   
I have been on a flare since december... (Diagnosed in march) and nothing seems to work... I am now on Remicade and Imuran, plus the prednisone and if I don't take a lomotil (anti diarrhea medication) before going to bed I spend the night in he bathroom...  I am so tired of this. Is it true that Remicade can take a while before kicking in?  I am thinking about the operation a lot, I am just afraid that this solution won't work either (pouchitis or infection or whatever?).  It also seems that there is no food my gut will tolerate better than another... Any thoughts?? I am desperate!
Diagnosed with severe pancolitis 03/09
Prednisone 40 mg, Imuran 100mg, 2nd Remicade infusion next week.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/22/2009 8:11 AM (GMT -6)   
Jpouch surgery for UC has a 95% rate of satisfaction. Bottom line is if you need surgery you need surgery. Even people who have had less than satisfactory outcomes (later diagnosis of Crohn's or chronic pouchitis) ALL say that surgery is still better than life with UC. I understand your frustration and desparation; chronic UC that is refractive does not make for a life well lived.

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


PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/22/2009 11:40 AM (GMT -6)   
I feel toxic with alle the meds, on top of everything.. I feel they don't really help my UC plus they make me feel like a zombie... Operation seems like the logical solution but it's weird, almost everyone around me is against the ikdea of me without a colon... I understand that it's me who has to make the decision but maybe I am missing something important??? I dont see the surgery like a negative thing... living with a colostomy bag for 6 months and then be med free and colitis free seems only like a small sacrifice to do....
Diagnosed with severe pancolitis 03/09
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/22/2009 11:46 AM (GMT -6)   
Believe me, I had no family support, no GI support, and very little support of friends when I opted for surgery. Everyone thought it was a radical solution but NO ONE was walking in my shoes! After I had surgery and everyone noticed the immediate improvement in my health they all apologized and said they had no idea how sick I was. I think that's one of the insidious things about UC; it robs you of your life so slowly that the minor changes that take place over days or weeks aren't noticed. You can always ask for a surgical consult, meet patients of your surgeon, and take your time making a decision. No one is going to put a gun to your head and make you do it.

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


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/22/2009 12:33 PM (GMT -6)   
You might consider a predigested liquid diet that would give you the nutrition you need while allowing your gut time to heal.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/22/2009 1:46 PM (GMT -6)   
Princesa, what is a predigested liquid diet and where can you find this type of food?
Diagnosed with severe pancolitis 03/09
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16732
   Posted 5/22/2009 1:56 PM (GMT -6)   
I agree with Sue. If you need surgery, it may be your only real option. I wouldn't jump on it without strongly considering the alternatives but if you don't have alternatives and you're on drugs that have unknown longterm effects, surgery is a 100% sure way to feel better. It seems like a long, hard recovery but you will make it though and before you know it, you will have a jpouch and live comfortably again. I think about these whatifs all the time. I am scared the same thing will happen to me someday and the tought of surgery scares me. The thought of being in a flare like the one I was in a few months ago scares me equally. It was no way to live. I hope you get some relief soon whether you opt for a surgical cure or one of your meds starts helping.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa at night + Probiotics + Iron - So far so good!!!
 


Canadian Chick
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted 5/22/2009 5:10 PM (GMT -6)   
I'm on Remicade and from what I remember at the beginning, it does take some time to kick in. I had no relief after the first infusion, some relief after the second and dramatic relief after the third.

qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 5/23/2009 2:36 AM (GMT -6)   
Everyone around you is against surgery? They clearly must not fully comprehend the severity of the problem or how brutal all the drugs and side effects are. It's weird my mom has been the opposite, pushing me to have surgery for awhile. At first I thought it was foolish of her to take surgery so lightly but now that medications aren't doing the trick I think she was right all along to just get it and be done.

PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/23/2009 5:41 AM (GMT -6)   
So I guess I should wait for my third infusion of Remicade before surgery... I'll try to do that (it's in a moth so I will see how I can manage to live like this for a month...) the thing about Remicade is that I don't totally trust it... only 10 years of use in the medical field doesnt give us the facts about long term use...

And no, people around me don't understand how sick I am because I don't LOOK sick, I've lost about 17 pounds but I only look slimmer (was 127, now 110), I still take care of my appearance and try to continue working and doing my stuff... So everyone think I am just complaining I guess, my father (shich I am stuck to live with since I am sick cause I couldnt continue paying the bills) is pushing me to work, I understand that he's impatient that I move out, but I have trouble doing a 5 hour shift...

This is total hell, I am totally down this morning (father started screaming at me at 6 am because I put too much water in a potted plant, it fell on the wood flooring and soaked it for the night (this never happened to me before i guess I was too concerned about having my colon removed when I watered the plants...) so now the floor is a little messed up and my dad LOVES his floor, theres not a single day he doest check for a new scratch on it (I have 3 cats who had to follow when I moved in here ...) and tells me about it. I feel like a burden.

I feel so bad today... I gotta work at 12:00 for god's sake. Soory for my complaining, I had to vent...
Diagnosed with severe pancolitis 03/09
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/23/2009 11:56 AM (GMT -6)   
PinkPaperclip said...
Princesa, what is a predigested liquid diet and where can you find this type of food?

One option is Absorb Plus - a shake mix in three flavors - that is a total meal replacement. It gives you the nutrition your body needs while allowing bowel rest. Details are in Jini Patel Thompson's book The IBD Remission Diet.
 
There are other predigested products your doctor might recommend, too. It's a shame more docs don't at least try this route, which has been found to be as effective as steroids in some cases, without the side effects.
 
http://www.imixnaturals.com/
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


blue85
Regular Member


Date Joined Mar 2005
Total Posts : 62
   Posted 5/23/2009 12:25 PM (GMT -6)   
I totally understand your feelings about everything, I tried every drug (even some trial drugs) and nothing work.  The meds were making me just as sick as the disease.  My husband was the only one that understood just how sick I was because we live in the same house.  Everyone else thought that I was crazy to have my colon removed.  I can tell you it gave me my life back 100% I only wish that I had done it years before.  I did not opt for the J-Pouch but for an permamnent ileostomy and I don't regret one second.  You ultimately have to be the one to decide if you are sick of just barely living, stop listening to everyone else.  No one can ever understand what this disease does to your body and mind unless they are suffering with it also.  I wish you nothing but the best in your decisions.


Dx: with Crohns in 10-2003 then changed to Ulcerative Colitis 1-2007
 
Proctocolectomy with Ileostomy June 19th 2007 - Doing great.
Prednisone 60 mg (currently tapering by 10 a week until zero), 6MP 125 mg po qd, Pentasa 500 mg 3 po tid, Calcium 400 mg with D tid, Iron po tid, Vit C po tid, Tylenol #3 prn, Multivitamin, Remicade - Quit working, Asacol, Colozal, Abatacept Study
 
 
 


PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/24/2009 10:31 AM (GMT -6)   
My decision on getting the surgery done soon is almost official, I am just too sick and my life has changed way too much. I Can't go out, can't work, can't eat, can't do the things I loved.  People around me are starting to show support concerning my decision, makes me feel a little more confident. I feel like I tried everything. I am not too fond of naturopathy and natural remedies, anyway my colon is in such bad shape I don't know If I would take the risk to get worse and perforate.... I am scared of the surgery and the complications it may bring , I am scared of not getting used to a bag, or that my reconnecting fails... I feel like I have no safety net but I am so tired of being this sick, I think it would be better to go for it.
I am waiting for my surgeon to call me and she'll give me an appointment to explain everything to me and I will get to meet people living with a ileostomy and a j pouch to ask my questions :)
Diagnosed with severe pancolitis 03/09
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
 


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 5/24/2009 1:02 PM (GMT -6)   
Best of luck to you. I read the Osotmies section a lot and there are a great group of supportive folks there. Keep us updated.
32 yr old female
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?


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 5/24/2009 2:04 PM (GMT -6)   
Pinkpaperclip,

This disease can be just brutal and I hope the remmie works soon and if not you get permanent relief through surgery. Hang in there and I'll pray for you : )
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*


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 5/24/2009 3:13 PM (GMT -6)   
Remi for my daughter took 4 doses, and then we adjusted it from 12 weeks at 5mg per kilo, to 10mgs at 8 weeks. Some even dose at every 4 to 6 wks to get the UC settled. She is in remission for the first time, and feeling really well again. Just one persons story. When it stops, we will deal with the thought of surgery, but not yet.
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


PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/24/2009 6:35 PM (GMT -6)   
Thank you so much everyone, Your support really makes a difference.
I am waiting for a call from the surgeon and I will have my 3rd dose of remicade on june 15th I might wait to see if there a change after that dose but after 2 doses theres nothing... Still pooping blood like crazy :( (and I don't know if my health status gives me that much time...)
...I try to tell myself that the ostomy won't be permanent, I will give a try to J pouch when I get my health back... And I see that I will be able to swim with an ostomy, that made my day!!!! I will spend the summer in the pool, getting my strenght back, relaxing and taking care of myself. :) (And maybe having a drink?? Who knows!!)
I will keep you updated on the decisions,
Thank you sooo much!


Diagnosed with severe pancolitis 03/09
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
 

Post Edited (PinkPaperclip) : 5/24/2009 5:38:13 PM (GMT-6)


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 5/24/2009 6:52 PM (GMT -6)   
John Wu - that really works eh? I am heading that direction myself....
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:20mg pred (as of 4/27/09), 12x pills Asacol per day, 100mg Imuran 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, Vitamin B-12 injections weekly.
Surgeries: 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"


handball1
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 5/24/2009 7:59 PM (GMT -6)   
To pink paper clip I am going through all the symptoms of ulcerative colitis and I can tell you i been through the toughest times in the last three years of my life.  I  went through the whole gastro visits and took all the drugs up to remicade. And after all the drugs and no results guess what If they dont work for me I dont take them not like alot of people on this site who have been taking them for years.  After that decision my next one was not to jump to surgery that is not even a thought in my life. I went caffiene free ,dairy free, DRUG FREE , smaller portion meals after I learned what will not bother me as much fish oil pills for my nerves, pepperment oil capsules for a calming of the digestive tract and alighn pills for probiotics and  a protien shake to help keep my weight in between meals.
I have seen improvement compared to where  I was when this all started  I really feel I just have to let time heal everthing now so I am trying not to agitate my system I really believe dairy was doing a lot of damage because when I stopped I lost alot of the moments when I couldnt even come close to making it to a bathroom. I dont know how old you are but I hate to read responses that talk about surgery or giving drugs more time
 
Just a different view
jay
:-)

PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/24/2009 8:14 PM (GMT -6)   
Hi Jay, I understand your point of view but personnally I don't wan't to resctrict my diet to the point where I can only eat boiled chicken and rice for the rest of my life. You have been able to do drastic changes in your lifestyle and that's excellent! I am a person who loves good food, good wine, dessert, pubs, mexican food, etc. They are small joys in my life , I had to cut everything down to chicken and rice ( I am caffeine free, lactose free, eat small meals, low residue diet, etc) since march and it is hell it makes me totally depressive!! I am thinking about stopping the meds and see what it does but again if I end up worse than I am right now it means I end up with a busted colon and septicemia. I am thinking about a lot of things... They sell 100$ pills at the natural food store that are supposed to get rid of my UC, theres homeopathy, theres acupunture, herbs, supllements, teas, etc... I don't know where to look there are so many things I would give a try before surgery of course, but I am far from being rich and here in Quebec the operation is free, other ressources are darn expensive... I don't know I wish Mezavant had worked in the first place. :S I am confused now :O
Diagnosed with severe pancolitis 03/09
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
 


singnrun
Regular Member


Date Joined Apr 2009
Total Posts : 31
   Posted 5/24/2009 8:53 PM (GMT -6)   
When I bleed (in my flare) I do Rowasa Enemas and it stops my bleeding in like 2 days tops! :D
UC diagnosed November '08

Age: High School
Prescriptions: Colazal (5x2 daily) Iron (2 daily) VSL#3 DS (2 daily)
Extras: Fish Oil, tumeric, Curamin, biotin, multivitamin, bee propolis
Probiotics: Florastor, Primal defense (Garden of Life), Culturelle, Sustenex
Also: metamucil wafers (2 daily), Partially on Maker's Diet,
Always looking for new and good ideas! :D

Its a LONG AND WINDING ROAD but you just gotta LET IT BE you may need some HELP but it will be worth it in THE END (Beatles songs hehe)


handball1
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 5/24/2009 8:57 PM (GMT -6)   
To pink paperclip I know all about eating finer things in life I am surrounded by them everday I am a chef  and there are plenty of ways to still eat good and nothing wrong with red wine. mexican is very healthy and most of the food is dairy free and gluten free just stay away from the spicy choices.
Olive oil instead of butter I will not deprive myself completely instead of boiled chicken  a little garlic and fresh herbs  rice with saffron and chicken stock all flavor.  All the herbal remedies you mentioned are all great but taking them with the drugs you are on would seem like a waste to me because I am so against them A major reason is when I was going to a gi they tell you right there there is know known cure  the drugs are supposed to bring down the inflammation ok again they did nothing for me.so why have abunch of side effects down the road that no one needs on top of uc.     It sounds like your attitude is not helping your symtoms I also believe in good attitude ,stay calm, exercise, keep busy to keep your mind off running to the bathroom there is a nerve that runs from the brain to the digestive tract that triggers a outbreak.
 and deal with a bad accident and move on and forget about it dont ever dwell on it just always be prepared this all helps   i work a very stressful job and commute 1.5 to 2. hours one way to work
and that is always  at least a 10 hour day .  my point is I REFUSE TO BE BEAT BY THIS!!!
 I will not sit around and say I cant go out and the more things I do the easier it gets.
 It sounds like your in bad shape  But so was I and still have my troubles but it took me over a year to get over my stubborn ways and get serious about healing and I dont make huge promises
I know at least another year of behaving with my diet and who knows maybe it will be back to foi gras  and real underwear! haha
 
jay tongue   
 

Post Edited (handball1) : 5/24/2009 8:09:43 PM (GMT-6)


PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/24/2009 9:51 PM (GMT -6)   
jay I don't know what to answer to your post... your lifestyle and attitude seems ideal but I think we are very different. I don't feel beaten, and to me surgery isn't a failure. That would be really offending to everyone with a stoma or J pouch (and I think they are courageous people who made inmportant choices for their health). I think that traditionnal medicine is reliable, and I think natural remedies are in some cases effective. I also believe that every illness has an emotionnal root somewhere and that we have the power to heal ourselves. Thing is I am trying to heal myself since december, I don't see much improvement. I am commited to my diet, exercice, meditation, relaxation, and I also take my meds. It's like theres a lock and I can't find the key that fits...

I think every case is different and theres a different "cure" for everyone...
Diagnosed with severe pancolitis 03/09
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
 


handball1
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 5/24/2009 9:59 PM (GMT -6)   
I guess so I guess I should stop reading post because I want to write to everyone and I know   its not right to suggest my way when every one is different in there situation.  But I do hope the best for you and everything works out with your decisions.
 
jay

PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/24/2009 10:12 PM (GMT -6)   
It's ok Jay, you found a way to manage your colitis, thats wonderful, and it's normal that you want to share the solution. Of course it doesnt mean that your solution would work for everyone.. I tried everything you mention except the gluten free diet which I will give a try just In case I am only gluten intolerant and dont know about it... Thanks for your advice :)
Diagnosed with severe pancolitis 03/09
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
 

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