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Ulcerative Colitis
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Posted 9/12/2009 12:34 AM (GMT 0)
Hello everyone...

   I just talked with my GI for quite sometime... he is so supportive in anything I decide to do... As you know, I've started flaring again and even on Prednisone, I can't get into a good remission.   He said my next step is 6MP...  I asked him about the test to determine which drug is more applicable in my case (6MP or Imuran) and he said that it is not necessary in my case. The only difference with 6MP and Imuran is that Imuran has to break down before turning into 6MP in your body... So he would rather just prescribe 6MP because it's cleaner and starts working right away without having to break down in the body first..  OK.. so much for that.. And, I can't even think about Remicade or Humira until I have tried 6MP first and failed.....

   So... I started thinking and talking with my family... I am probably going to just have the surgery and get rid of this Darn disease.  My GI is setting me up with a consult with a colorectal surgeon at UC Davis next week.  For now, I'm upping my pred back to 40mgm until I make the final decision what I'm doing...   I'm still thinking about going on 6MP.. but it takes months to start working and I'd have to stay on Prednisone until it does...   I don't like the thought of putting all these chemicals into my body, not really knowing for sure what they will do to me over the next 10 years or so.. .maybe nothing, but maybe lymphoma or something else really bad... I'm already afraid of the problems I've started from being on Pred this long...  I don't know if it sounds like I'm throwing in the towel or what.. but my GI supports me completely. If I have the surgery, I'll be cured, and med free, and I won't have to have the underlying thoughts of future complications because of meds I'd be taking for the rest of my life...  I have such an active lifestyle and honestly, I think that surgery is the best route for me...  I don't have time to deal with feeling crappy from being sick or being sick from medications... I just want it to be over with so I can get on with things...

  

  

 

Posted 9/12/2009 1:42 AM (GMT 0)
It is good that you're taking steps to explore the options. I would definitely look into surgery if I exhausted all of the options. I hope you get into remission quickly and don't have to make a decision right now but if you don't, surgery can cure this forever. goodluck & feel better.
Posted 9/12/2009 1:52 AM (GMT 0)
Wishing you the best. Know that you are not the only one who is considering surgery. It is my next step. I have not been successful with any of the drugs. I have been on 6mp, prednisone, Remicade and Humira. I have not been in a good remission for at least 3 years. I too am hoping to get a consult with a surgeon after my appointment on Monday with another GI at University of Penn. We'll see what happens.
Posted 9/12/2009 2:12 AM (GMT 0)
have you tried to modify your diet?
Posted 9/12/2009 3:33 AM (GMT 0)
I haven't really modified my diet like I probably should with U/C... but I can eat most anything without any problems.... My main symptom with my U/C is bleeding.. I am feeling depressed tonight and have been sitting here reading about people having the surgery and even THAT scares me now.... I honestly don't know what I'm going to do... I feel like a scared little child...
Posted 9/12/2009 4:34 AM (GMT 0)
I always get freaked out when I read that kind of stuff but most of the things you read are written by people who soon forget the negative and move on to a new life of better health. Surgery scares me too, in fact, needles scare me, hospitals scare me, doctors scare me, haha, what doesn't scare me? I am a baby but sometimes you have to get past that and look beyond the surgery and see the many happy, healthy years you can live afterwards. The surgery for UC is definitely not something to take lightly but once you recuperate you will live UC free.
Posted 9/12/2009 5:05 AM (GMT 0)
I would consider surgery too....but you've not really had a break in a very loooong time.

Are you SURE you don't have Crohn's?

q
Posted 9/12/2009 5:24 AM (GMT 0)
SusieBuddy-i know its so hard, but surgery WILL give you back your life, and its NOT throwing in the towel, its WINNING!!! Its literally taking that stupid old colon to the trash!
And i know how scary it is, i was there, and it terrified me and you wouldnt believe some of the stupid things i worried about, but i learned from this board and the ostomies board that none of my fears are stupid, or unfounded. And i got great support from everyone here and on there.
And now 2 and half years after surgery i have my life back and still to this day, there are things that happen everyday and i think, im so glad i had this surgery and am not sick anymore.
yes there can be complications, but to me, as i was making my decision, i thought i KNOW i HATE my life now, i know i am miserable. If i have surgery, I MAY hate it and i MAY be miserable, but almost everyone i talked to was super happy and i thought, i have to take this chance and it was a wonderful choice.
good luck to you and ask any questions you need to!
Oh and to help you with your fears, make a pros and cons list. I made one and i had 3 cons, and two pages of pros, lol. And i kept that list with me all the time up until surgery. It really helped me remember why i was doing it
Posted 9/12/2009 5:37 AM (GMT 0)
Susie,
I have had Proctitis/uc and they wanted to take my colon out. I am a week and a half into the SCD diet and it is nothing short of a miracle. I was given flagyl which put me into the worst flare. I was so week and vast amount of bleeding and D. i have tried to the SCD diet before and it put it in remission so I started again. I hope you have someone to help you - it is so hard when you are so weak and fatigued. I am sensitive to casein so have a hard time with the yougurt so I got Kirkman Lacto acidophilas instead and their enzymes with IDP they are made specifically for scd diets. They help so much. The first week I was to weak to cook a chicken so I bought Pacific organic chicken stock in the box from Costco - yes it had a bit of cane sugar but I simmered for a long time - I made jello out of plain gelatin and welchs 100% grapejuice (like jigglers) and had boiled eggs - after a week the diar. stopped, at 9 days the bleeding has stopped and I still have a bit of mucos but formed. I am eating spinach, chicken, soups etc.. all out of cookbooks or from the site nomorecrohns.com she is a godsend. Good luck - I too feel for you but today I feel good - actually worked out a little and hope to keep the innards. My prayers are so with you!
Posted 9/12/2009 11:47 AM (GMT 0)
I agree with Summerstorm. You're not throwing in the towel. You have think about your quality of life. I also fear about the long term effects of being on these meds and if my doc said "hey, lets get that colon out tomorrow" I would do it in a heart beat! Many many people have had the surgery and some have complications and some don't but all of them come back and say they never regret it. It you go the route of a total colectomy then you will have to adjust your life around the bag but from what I've read, it can be done. Or if you have the Jpouch, then you have to adjust to that surgery as well. Surgery is a challenge (and scary!) but it may be what you need to get your life back.
Posted 9/12/2009 2:08 PM (GMT 0)
Improving quality of life is one of the reasons to have surgery.  Like you, my main complaint was bleeding (never had pain) and overall malaise.  My UC was limited to the last 3cms of my rectum but even a tiny spot as that could not be controlled.  Surgery is scary for everyone who has had it but all of us say life is better post UC.

 

Sue

Posted 9/12/2009 2:56 PM (GMT 0)
You dont really adjust your life around the bag. For the first few months its kind of a tricky, bit of a learnign curve if you will. But after that you wont even remember its there. There are lots of times i totally forget about it. And i have changed nothing, except putting things in my left pocket instead of my right.
Posted 9/13/2009 4:53 AM (GMT 0)
Sue and summerstorm,

I for one am so glad to hear about your experiences. As of last colonoscopy in February, my UC is limited to the rectum and about a 1 foot up...the rest looks great. As my doctor put it...your holding area is the worst...of course, I can't hold it which is why I am running to get there in time all the time.
This is my main reason for being ready for surgery. I just want to make sure I have exhausted all possible options. You know, I guess I keep waiting and hoping for that miracle cure/drug, whatever.

Susibuddy,

It's normal to be scared. I am too...I don't know what to do either and everyday is a challenge. Just take one day at a time and the answers will come for you...eventually, you will just know what is right. Quality of life is so important. Spending your life worrying about where the next bathroom is, or being in pain, or if I eat this will I get sick and it goes on and on. You are not alone! I feel for you and understand what you are going through. It's not an easy choice but one day at a time. Keep posting on here...everyone is so helpful. I am so thankful I found this. It has helped me so much!
Posted 9/13/2009 4:08 PM (GMT 0)
Hi. My son, who started with proctitis and then moved onto pancolitis had the first of two (maybe three) surgeries two weeks ago. For a while he was so scared to think about surgery that we, as a family, could not even talk about it. He finally reached the point that he was so sick of being sick that he wanted to take control of this disease and move on with his life. For him, this ended up be the absolute correct decision. Even though he has had some complications the recovery has still been MUCH easier than I imagined. Already, just two weeks post surgery he is happy and laughs so easily. He has a look of peace on his face that I have not seen in two years.

My advice is talk to as many doctors as possible and to get a referral and speak with a QUALIFIED colo-rectal surgeon. This is a complicated surgery and a lot a judgement calls need to be made. For someone who does this surgery a few times a week it is not a big deal, but do not let a general surgeon near you. I think it is important to talk with a surgeon long before you might decide to go that route so that you can get all you questions answered and have time to really think about it all.

If you have any questions do not hesitate to ask.
Cathy
Posted 9/13/2009 10:16 PM (GMT 0)
Thank you everyone...

I am feeling better today.. I am back on 40mg of Pred for a week, then start tapering down again by 5mg every 5 days.. till I get to 20, then staying there until I decide what to do.... I can't tell you how much your replies mean to me... I have not been this scared about something in a long time.. I feel like I'm backed against a wall and the only ways out are either through fire or a pack of wild dogs..lol... Which way do I go??? So, I have decided to just go one day at a time.. not trying to worry too much.. I will enjoy the energy again from the steroids for a short time.. I will have my husband and daughter and a good friend of mine who is a registere nurse going with me to the consultation with the surgeon and I am still even considering trying the 6mp.. Or hoping that by some miracle I will get into remission this time from the pred beforehand and not have to do either one.. lol... God is in control and won't give me more than I can handle.. I need to remember that too.. :)

Thanks again so much everybody... I can't tell you how much it means to me that you are all here :) :)
Posted 9/13/2009 10:41 PM (GMT 0)
Reading your post is like reliving my bout with UC.  I had surgery after seven years with UC and I honestly don't regret it.  I have my life back, without medications or restrictions, other than some food.  If you are keeping a list of do or don't, put me in the list of do, I know you won't regret it!!!  Keep me posted

Posted 9/13/2009 11:07 PM (GMT 0)
wishing you the best
Posted 9/13/2009 11:57 PM (GMT 0)

It sounds like you're taking a really knowledgeable and sensible approach to the surgery and its really great that you're taking support with you for the consultation.  I wish we all had advocates and people who could help us figure out what's best. 

While I don't think I'm close to surgery yet, because I still have some options (Imuran, etc.) I would definitely consider surgery if it would mean the difference between living a life or being crushed by this disease.  I think it's brave and life affirming to make those hard choices.

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