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Posted 1/14/2009 7:26 PM (GMT 0)
My doctor just started me in the process to get Remicaid. I went and read the possible side effects and they scare me to death. Higher chance of cancer? I just feel like it is going to tear my body apart. I am so upset and anxiety ridden. I want to be around for my son (possibly other children) my husband. I just feel hopeless right now. Any information you have would help.


Thanx
Melissa
Posted 1/14/2009 7:38 PM (GMT 0)
Hi, I just happened to go with my husband to see his Gastro doc yesterday. He has gall stones... and, while there, asked him about remicade since my son is due for his 3rd infusion on Friday. I, like you was scared for him. He is 41 and had colitis about 10 years.
My husbands doctor said not to worry. He put a lot of his patients on it and they do great. He said that it does not totally suppress your immune system, but modulates it to try and help it be more normal, and so your body don't attack itself. If it works, then you can slowly go off all other meds. He said it will heal my son's colon and put him in remission. My son has a different doctor. My husbands doctor is in considered one of the best in the Wash. D.C. area and has totally put my husband in remission now for 8 years. He had colitis too.
But, he never needed Remicade. My son does. He took the first 2 doses well, felt fine afterwards, no big deal. So far though, he is still waiting to see better results. He has no pain, blood or diahrea but just frequent trips to the potty, and just loose and a bit mucousy.
We are hoping to reduce the trips to just a couple a day, and that soon he feel more comfortable about eating a little more and going out more to socialize. Good luck to you.
Posted 1/14/2009 7:44 PM (GMT 0)
I've been on Remicade for a little while, and I know it works well for many people. I also did not like the side effects, but I did not like the way I was feeling either. It's really the final option before surgery. I do hope it works for you...and you have every right to be fearful. However, consider the way you're feeling and how you wish/want to feel. Those that react positively to this medication believe it's wonderful! I was very hopeful, but it just isn't doing the trick.

I wish you the best of luck!!!

: ) Robin
Posted 1/14/2009 8:57 PM (GMT 0)
Robin-- sorry Remi is (?) failing you. I may be a failure too.... waiting to see if my dose is going to be upped before giving up. I am very close to saying to heck with this colon, though I keep trying "one last time" efforts as I am so not exited to pooh as much as I pee... but I am fed up with constant pain.
Posted 1/14/2009 9:17 PM (GMT 0)
I'm right there with you Probiotic. Although I have never suffered any Remi side effects, it's not working for me. They are giving me one more infusion next week before throwing in the towel. This constant pain is no fun.
Posted 1/14/2009 9:42 PM (GMT 0)
Sorry you are in the same boat, Fargman. How many infusions for you and did they try a higher dose? My GI seems content to let me flare first before deciding... I am going to try mixing pig whipworms (TSO) back into the mix to see if it helps Remicade work. Both Remi and TSO have had some benefit for me, but the Remi's effect - which takes 4 days or so for me- only seems to last a couple weeks. I also am going to try fecal infusions (home brewed at that) but my donor girlfriend has had some loose stools the past few weeks so I want some solid turds with a normie's bacteria beofre I do that, lol.
Posted 1/14/2009 9:53 PM (GMT 0)

Probiotic said...
Robin-- sorry Remi is (?) failing you. I may be a failure too.... waiting to see if my dose is going to be upped before giving up. I am very close to saying to heck with this colon, though I keep trying "one last time" efforts as I am so not exited to pooh as much as I pee... but I am fed up with constant pain.

You know, people always tell me (the ones who don't have UC or haven't had the surgery, of course) that I shouldn't want to get the j-pouch surgery because I'll "have diarrhea for the rest of my life and go to the bathroom alot". I just look at them like "And.... your point is, what?" Because in reality, I don't remember the last time I had a solid BM as it is, and I poop MORE than I would pee on a daily basis if it weren't for this flare, so really the j-pouch is a better option than active UC because at least you wouldn't have the pain and the urgency and the overall crummy feeling. I can live with the numerous bathroom trips and D. What I can't live with is the pain and not being able to leave my house because I'm afraid of having an accident or otherwise embarrassing myself.
Posted 1/14/2009 9:57 PM (GMT 0)

Hi Melissa--

I, too, was scared to try the remicade and put it off for as long as I could.  Finally got fed up with being miserable and on pred, so went ahead.

Best thing I ever did.  Have had my 3rd infusion about a month ago and have been symptom-free since then.  I can't believe it myself.  I get facial flushing sometimes, but that seems to be all the side-effects so far. 

I'm off everything now--no pred and have been off the lialda for a month or so also. No mucous, no blood, no diarrhea.  Just hope this keeps up.

If you do go on the remicade I hope things work out for you the same as me.  I know everybody is different, but I'm sure human nature being what it is, we all hear a lot more about the failures and problems than the success stories. 

Best of luck

Michigoose 

Posted 1/14/2009 10:00 PM (GMT 0)
Thanks for sharing Michigoose! I'm starting Remicade probably next week and that makes me hopeful. How badly were you flaring when you started it?
Posted 1/14/2009 10:50 PM (GMT 0)
I know the side effects of Remicade are scary, but those side effects only happen to a small minority of the people. And the patients who got cancer were on 6MP/Imuran at the same time as Remicade.

I receive my 6th infusion tomorrow and Remicade has worked pretty well for me, although it took a while with the right combo of rectal meds. I still have some morning urgency and unpredictability with BMs (which are mostly loose), but my GI thinks that it is IBS and not UC. The only side effects I've had are hair loss (which could be from Colazal) and constant cold sores (my family doctor said that my weakened immune system is not fighting the virus).

I'm still uncomfortable with taking a drug like Remicade for the rest of my life, so I haven't stopped looking at surgery. I saw a GI at the Cleveland Clinic (one of the best places for GI disorders) and he said he only recommends using Remicade for a year b/c the drug hasn't been around long enough; if the patient starts to flare without Remi, then he says to go for surgery.

Posted 1/14/2009 11:24 PM (GMT 0)

Probiotic said...
Sorry you are in the same boat, Fargman. How many infusions for you and did they try a higher dose? My GI seems content to let me flare first before deciding... I am going to try mixing pig whipworms (TSO) back into the mix to see if it helps Remicade work. Both Remi and TSO have had some benefit for me, but the Remi's effect - which takes 4 days or so for me- only seems to last a couple weeks. I also am going to try fecal infusions (home brewed at that) but my donor girlfriend has had some loose stools the past few weeks so I want some solid turds with a normie's bacteria beofre I do that, lol.

I have had 2 infusions so far.  My 3rd (higher dose) is next week.  I had the same thing with the first infusion: 4 days in things improved a great deal and I was so optimistic.  about a week later the flare got worse.  After my second infusion, I saw no results at all.  My flare gets worse and worse each day.  They are increasing the dose for next week and I am hopeful as always that it will take hold.  I've also started taking Imuran so maybe a combination of the two?  I'm not sure what else I can do after that.  This flare is too much to handle right now. 
Posted 1/15/2009 1:45 AM (GMT 0)
Surgery is definitely an option for us...in fact, it's my next step. My consult with a surgeon in Columbia, Missouri is on the 27th...however, my great-uncle was a GI/surgeon and he also has had a colectomy, so I'm meeting with him this weekend and he may be able to pull some strings to get me seen by someone sooner. I cannot imagine another month like this. I'm no where near my worst, but I'm still having pain, unpredictability, lots of blood loss, and my 5th Remicade infusion was this past Monday. Normally I feel pretty good the first few days, but today the pain started behind my belly button...never a good sign. I was feeling hopeful that at least this last treatment would get me through to my surgery, but I feel worse. I had my little 10 minute pitty party while talking to my Daddio this evening, so I'm over it now. : )

I'm sorry that some of you aren't seeing results either. I'm tired of being hopeful for a treatment to work. And I completely agree that having a J-pouch is better than living with active UC. Really...I can stand the idea of taking immodium every day instead of Remicade and prednisone. The combination of the two caused me to be hospitalized with absesses, and a MRSA staph infection. So, Colectomy? Hell Yeah!!!

My family and I are starting to get tired too...I've been in a constant flare since June and I just can't do this anymore. I fully believe that one should not allow a situation/condition take control, but it is so difficult to keep it low-key when it is constantly being intrusive.

Anyway, I would like to hear more posts from those of you researching and opting for surgery. I have my ups and downs with the decision, but I know ultimately it is my only option. It's nice to hear from others that are in the same situation I am.

: ) Robin
Posted 1/15/2009 2:04 AM (GMT 0)
For me the fact that most days I get by with 0-3 bowel movements a day (granted it might be 5 or 6 or who knows what if I didn't take any prednisone for flaring), oftentimes formed for 1-2 week stretches, makes it harder for me to jump to surgery, because I would be trading 0-3 for 8 or 10 or whatever (4-6 according to the Colorectal surgery advertisements which sounds like hogwash compared with what I read about on j-pouch.org, but I plan to become a Kagel Exercise olympian if I can help it, lol). For me it is constant pain, not frequency or even urgency, that is my nemesis and reason for starting to dream of surgery. Plus, I can relate to the family issue... I hate being forever never wanting to go travel on vacation anywhere interesting, or eat out more, etc, because it is just not enjoyable with the sheer nagging pain. As a male, though, the idea that one will pooh as much as one now pee's is not that encouraging, because we men have the luxury of peeing when standing like we are cars getting gas at the Indianapolis 500, as opposed to having to go into the neighborhood garage which is what the sit down seems like. But alas, we can't have it all. If I can't get off pred without flaring, my decision is obviously made, pain or not.
Posted 1/15/2009 2:25 PM (GMT 0)
I am just so disappointed with Remicade...and just my reaction to all treatment attempts in general. I've had a pretty positive attitude throughout our entire experience, but after having my hopes squashed each time we try something new or an additional infusion, I'm becoming sad. For instance, I started my bathroom breaks (meaning my break in sleep) around midnight last night, and probably went a total 20 times...so I did not sleep much at all, and continue to make the frequent sprints to the bathroom. So, yep...I'm really excited about the surgery!

: ) Robin
Posted 1/15/2009 6:57 PM (GMT 0)
I have the same problem: up all night. Right now, I'm going 40 times a day easily. My flare started in October so I haven't had to endure it as long. But as an active male with a young son, it's been hard to constantly turn him down to play, go outside, etc. Between trying to get through the work day and keeping my kid happy, it's really wearing me down.

I'm still optimistic about my treatment next week, but I'm realistic.
Posted 1/15/2009 7:22 PM (GMT 0)
I can relate to the active life style and running around after a kiddo! I'm dreading going to work this afternoon...I have to communte 45 minutes to my clients' home and today we're going around to gather job applications. She has two children under 4 who will be with us, so normally that would be completely welcomed...but today I am just in so much pain and discomfort I have a hard time leaving the couch. My son ended up napping on the living room floor today while slept on the sofa...he originally started in his beanbag but moved...but my point is that I am very tired of my life style being affected by this condition. I want to not have to think about the bathrooms between point A and B, and the pain that goes along with my flare is absolutely ridiculous...I want it gone!

I so wish you luck with your treatments. My GI is giving me Remicade as soon as I can take it just to get me through till surgery. But b/c it's done such a lousy job this last time I think I'm just stuck with my current symptoms. *sigh*

: ) Robin
Posted 1/16/2009 4:20 AM (GMT 0)
I've been on remicade for over a year now, and Initially thought it was my miracle drug,  but I"ve had several flares since then.  Makes me worried that its not as effective.   I've flared now d/t my monthly cycle,  and I've flared d/t getting a stomach bug from my kids.   I'm currently coming off a flare,  and tapering the prednisone,  but I have made the HUGE decision to have surgery.  I just realized that I can not continue to have flares off and on for the rest of my life.   They are so disruptive to my life,  my job,  my family and ME!!   Plus the meds I have to take to keep me out of a flare are going to KILL me.    The prednisone especially.    I have diabetes,  and prednisone is horrible for blood sugars!  I had a blood sugar of 463!!  Scared the "crap" outta me!!  (quite literally)  lol.   Anyways,  I am so scared as to what all these heavy duty drugs are doing to my body.   I have to get off them!!   So,  I decided I need to end this once and for all,  and have the surgery!!   I met with a colorectal surgeon last year for consult,  but now I have another appt on Jan 29th to tell him I want the surgery.   I'm scared to death,  but know in my heart that its the best solution in the long run.  
Posted 1/17/2009 1:17 AM (GMT 0)
Christie...

I completely understand your concerns with the medications. I spoke with my GI this afternoon (he is so wonderful about calling me himself and discussing my current situations...if I can't make it to his office) and he agrees that though I am not feeing the best we are going to stay at 20mg Prednisone and deal with the sickness. My side effects of these medications is staph infections and abscess removals...ouch!!!

I think it's great you're opting for surgery! I agree, the flares are ridiculous and we do not deserve to have our lives interrupted! : ) It's very exciting to think that you are going to be able to get on with your life and being an active Mother...that is what I'm looking forward to. My GI also called my surgeon and got me in with him a week earlier b/c I just really cannot wait much longer. It's so silly how my body is not reacting to the medications. I did feel a little better today, but it's only a matter of time before I start to go back down hill. So, why wait for that to happen?

I am very nervous about the surgery though. 1. I don't like the idea of being cooped up at home for awhile. 2. I won't be able to lift my son. 3. There's a lot that is going to be out of my control. : )

Maybe we can communicate pre and post surgeries? It sounds like we'll be going through this around the same time. Will you be having the j-pouch? I joined the j-pouch.org site and they have answered many of my questions and are also very supportive. I'm RobinByrd on there too. : ) I think we may keep the ileo for awhile b/c the more surgeries seem to lessen our ability to conceive, and we would like at least one more pregnancy...one more Little Love. : )

Anyway, I do understand your fears and irritation. The medication we're taking is super scary and the effects are just as upsetting as our UC symptoms. So, why not just cure the disease so we don't have to take the medications?! : ) I think that's super exciting.

: ) Robin
Posted 1/17/2009 2:58 AM (GMT 0)
I applaud anyone who can get over the fence and make the decision, sad as it is that it comes to this. I am still a fence sitter because my number of BM's per day is so much lower than it will be once I have a pouch. But barring a miracle (eg TSO plus Remicade or TSO+remi+ home-brewed fecal bacteriotherapy or something) getting me off pred without reflaring, it is off to the knife I go too. I am soooo fed up with putting up with this nonsense. So, if the decision is made, congratulations.... I think for most it is an anti-climax. I know every big decision in my life that I've dithered on ends up being a relief once you take the leap. I'm just not quite there yet- still playing the "one last try" game.
Posted 1/17/2009 3:57 AM (GMT 0)
Well....I've been on it for 3 1/2 years with no side effects and no problems....except for the occasional food that makes me gassy. I do have some days I don't feel well and it's like I hit the wall, but it usually last only a day and then I continue on. But those are few and far between now. I do watch what I eat and follow the points with Weight Watchers, and just eat pretty healthy foods.
Posted 1/17/2009 1:35 PM (GMT 0)
I think the major deciding factor for us to have the surgery is my time with my son has been affected. I absolutely hate hearing him cry b/c I could not follow through with comforting him in the middle of the night, or just when he needs me in general b/c I had to run to the bathroom. I'm also very exhausted, not to mention the amount of pain that goes along with this out of control flare. At the moment I'm sad b/c my last Remicade treatment did help in the sense that I'm not just pouring (gross I know) and there is more of a shape to the bm's, but b/c there is substance it hurts even more as it goes through my colon!!! What?! Isn't it crazy how it's a good thing that our bm's are more formed, but at the same time the pain I have that goes along with that is worse than before!!! Grrr!!!!!

: ) Okay...I'm fine. Really. : ) I've just had a long night. I'm going to post next about ways to stay comfortable...I have my ways, but I'm wondering if others have ways that I haven't thought of.

Another reason we've opted for surgery is b/c I just don't have time to wait around. We want another baby within the next couple years, and that is impossible with my out of control UC. I'm also in grad school and I had to miss three weeks last semester b/c of a staph infection and abscess removals. These classes are too important and too expensive to miss. I'm just ready to get on with it!!!

: ) Robin
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