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Does it ever get better? Pred, Remicade, Humira, 6mp, the whole tamale

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Ulcerative Colitis
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Posted 11/13/2010 9:26 AM (GMT 0)
Hi all, This is my first personal post. You can see my history below, but I just started 200mg 6mp Mercaptopurine a month ago. My BMs are much better and less frequent! But I still wake up everyday and feel horrible pain. It takes a couple hours and vicodin to leave the house in the morning. Do you ever have pain free days? Does the bloating and distended tender stomach go away with real remission?

I am wondering if this is how life feels on long term maintenance medication , if this is my best option.

I am very tired. I feel like I have only lived a half life the last 3 years. No camping, backpacking, dating. I haven't been able to work full time in a year due to the colitis and prednisone side effects. I pay 100% Cobra and don't make enough money to pay my bills so there has been lots of credit card debt. Honestly gaining 60 lbs from prednisone and the stress on my joints, horrible sweaty nightmare filled nights, are often worse than the colitis. Luckily I have only had one 2 week hospital stay where I started on Remicade. I failed 3 times.

I have tried acupuncture, yoga, scd diet, gluten free. I finally had to accept I needed a lot more Western medicine to get through this.

My last gastro went out on disability and because of insurance changes I didn't have a doctor from May to October. Luckily I am at UCLA now, and the facilities are excellent. With the old Dr. we were getting ready to refer me to a surgeon. How do you know when surgery is the right choice? My gastro is talking about fighting for Humira. Errr, more drugs. (Rhetorical rant: What happens when Cal-Cobra ends, if I get on Hipaa or Medical they wont cover non fda approved uses. How can I find a European Union husband?). Surgery scares me but being "cured" and not living in fear that another flare is around the corner sounds very liberating. I have definite pill fatigue . Wait I have definite sick of feeling crappy fatigue. Thanks for any advice, rant support.
Posted 11/13/2010 10:48 AM (GMT 0)
When is it time to get serious about surgery? It's personal, only you know how bad things are for you and what the end of the line is. I never had the pain you describe which makes daily life difficult. For most people the end of the line is failure at Remicade and Humira (the drugs failure not theirs). I drew my line before starting either one.

Best of luck deciding. It is your decision on when.
Posted 11/13/2010 1:00 PM (GMT 0)
When you are in remission, yes the pain and bloating go away. 200mgs of 6mp is a high dose...I do hope you are getting your blood tested frequently?

Surgery is very personal. No one can tell you when is the right time. I base it on quality of life. If your quality of life is nil, then it might be time to seriously consider surgery.

Welcome to HW btw!
Posted 11/13/2010 2:12 PM (GMT 0)
I feel for ya!!! I'm always fatigued. That is the worse part for me. I've been on remicade since July 2009 this has helped my symptoms alot but not the fatigue. I've been told i will need surgery and to be honest if I was like I was before the remicade I would have had it already. I hope you feel better. This is a great site on advice and just support.
Posted 11/13/2010 2:41 PM (GMT 0)
I feel for you, too, and decided to have surgery after every medicine failed and the SCD diet didn't work either. After 7 years of trying everything to achieve remission, I was flat out sick and tired of being sick and tired.

My disease was in the rectum and large intestine, so the only choice I had was to have a proctocolectomy (large intestine and rectum removed) with a permanent ileostomy. I had never met anyone who had that done, so I went on blind faith that it would help me. Thank God, it gave me the cure I had been praying for and has given me my healthy life back. I'm not sick anymore, don't have to take any medicine, rarely see doctors, and can eat whatever I want. I'm able to work full time, exercise, and still have lots of energy to do fun things on the weekend. :-)

If you want to post a question over on the Ostomies section, you will hear from lots of people who will tell you that their lives are so much better being disease-free.
Posted 11/13/2010 5:20 PM (GMT 0)
Since you have tried most everything, why not give helminthic therapy a shot? I plan on doing so should surgery be my last resort. Nothing to lose (other than money).
Posted 11/13/2010 7:56 PM (GMT 0)
Well let's see. You are asking whether or not things will get better and whether or not you should get surgery.

Surgery option:
Yes. It is very, very likely that things will get better if you get surgery.

Non-surgery option:
I don't know whether or not things will get better if you don't get surgery. UC flares are very fickle. But I do know that all those medications you are taking right now are doing more harm to your body than good. So things could get a lot worse if you don't get surgery.
Posted 11/13/2010 8:55 PM (GMT 0)
Thanks for all the replies. I am just getting to them because with pred I only sleep between 6am and noon on weekends.

Yes surgery is very personal, and of course a GI is predisposed to pump you full of more meds and a surgeon will always recommend surgery.

I think surgery will allow me to live a much better life without the fatigue. I'll be able to exercise hard and lose the weight from just breathing (thanks to pred). I'm not worried about frequent BMs, cause last time I saw my GI he wanted me to have under 3 a day. I have been symptomatic so long I thought 6 or 7 was normal, ha.

Vanity and self esteem wise I still am on the fence. I am young and single and live in Los Angeles, meeting a nice guy is near impossible, meeting one with compassion and understanding I may have a poo bag for awhile, errrr.

Luckily there are support groups around. I just need to get past the shyness and agoraphobia to meet more UCers and rel life Jpouch success stories.
Posted 11/13/2010 9:23 PM (GMT 0)
if your life is miserable and nothing is helping, then it's time to look at surgery, in my opinion anyway.
I looked at it this way, i knew i hated my life and that i was miserable, but if i got surgery it might be awful, yes, but most people i had talked to loved life afterwards, so i decided to take the chance, to get rid of UC for good!
and i'm glad i did.
and the poo bag, not bad at all, trust me!
good luck!
Posted 11/14/2010 1:33 AM (GMT 0)
I wish I had considered surgery when I was younger.
Now I am lucky that Remicade works for me, but my colon is pretty damaged.
Posted 11/16/2010 1:46 AM (GMT 0)
blvdstray,
I was 35 when I had surgery and was very concerned that having an ostomy was going to make me feel/look unattractive. But, I have to say, I feel much sexier now that I'm healthy than I ever did when I was sick.

I bought some cute lingerie and short nighties to hide the pouch, but I found that I wear them for me, because my husband could care less about it. He's just so happy that I'm healthy and that we're having sex on a regular basis again! wink

On an everyday basis, nobody can tell that I have an ostomy. I wear normal, cute, form fitting clothes, and it doesn't show at all. People are always surprised and supportive when I tell them my story about how sick I was and that I had surgery that resulted in an ostomy. They all think it's great that I am healthy now. Plus, I have met lots of people who have had friends or relatives with an ostomy, so they are really cool about it. In fact, my husband's grandfather had a colostomy at age 40 due to colon cancer.

When you meet someone who loves you for who you are and hears your story about how sick you were, it's not going to matter to them that you go to the bathroom differently than they do. They're going to be happy that you're healthy and aren't sick anymore. That's the kind of guy you want to be with, someone who is not shallow or immature.

Hope that helps! :-)

Peety,
I'm glad that Remicade is working for you, but it's never too late to have surgery, if it stops working.
Cece
Posted 11/18/2010 9:10 PM (GMT 0)
I meet with my GI next week and am going to ask for a referral to a surgeon. I'd like to hear what the other side has to say.
Thanks for all the feedback.
Posted 11/18/2010 11:42 PM (GMT 0)
I am sort of in your boat too- I agree surgery is an extremely personal decision.  Some are primed to do it early on after everything seems to fail, while others, like me, will fight and fight through the bad spells in the hope that something will finally click, or even just to buy more time for fear that surgery will just lead to more issues.  Anyway, I am currently in the midst of helminthic therapy and have already tried fecal bacteriotherapy without success (used my wife's stool, and it's possible she just didn't have the optimal mix)... so I am trying last ditch things before giving up.  You should at least work with an alternative-oriented MD or naturopath on the side as an adjunct to your GI if possible, to work on other things that may improve your quality of life and perhaps even provide a magic bullet- you never know.

Also, do by all means get a surgery consult.  It will essentially pre-authorize you for surgery whenever you feel the time is right, and put you at ease with all your questions- assuming you find a surgeon you can trust.  So shop around for one, ask lots of questions, and gain from the security blanket of knowing that you won't have to go hunting and asking if you do throw in the towel.  I have done that but am still fighting to save my colon for now- but when the time comes, I will know.

Post Edited (Probiotic) : 11/18/2010 4:45:25 PM (GMT-7)

Posted 11/19/2010 5:14 AM (GMT 0)
please dont think of surgery as giving up, its the ultimate win over UC, its literally taking that colon to the trash!  If you don't want surgery, thats fine, but don't look at it as giving up and choose not to do it because you feel it would giving up.
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