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Remicade or J-pouch

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Ulcerative Colitis
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Posted 6/17/2013 11:04 PM (GMT 0)
Hey,
I am currently in the hospital do to a flare up. I was diagnosed with U.C 3 years ago. Last year around this time never felt better. I've been on 6mp, sulfasalazine,prednisone. As I said I am currently in the hospital and they are talking about remicade and if that doesn't work J-pouch surgery. Has anyone been on any different medications other then remicade? Or had J-pouch surgery? Can u drink alcohol with J-pouch? Also has anyone been on any anxiety medication and found that helped?sorryfor being all overtone place,really worried about this.

Thanks
Posted 6/17/2013 11:32 PM (GMT 0)
I can only comment on my experience and that is I did Remicade first before my j pouch surgery as a last ditch effort to save my colon. BUT, I wish I skipped the Remi and went right in for surgery. It would have saved me and my family a great deal of time and grief. On the other hand, some people have done really well with it. It's a pretty potent drug.

Yes, you can drink alcohol with a j pouch. You just have to make sure you are well hydrated before and after you drink. I don't drink a lot but I do enjoy drinking wine and I have no issues with it at all. I never took any anti anxiety meds so I cannot comment on that.

Sorry you are feeling poorly and I hope you turn around soon. Good luck...
Posted 6/17/2013 11:32 PM (GMT 0)
i'd give remicade a try. it seems to lose it's effectiveness not too long after you try it (or it doesn't work at all) but maybe it could give you a few months so you can explore other options. I was on it for 6 months and felt good for 3 months on it.
Posted 6/17/2013 11:37 PM (GMT 0)
i agree with bananagirl. moderate/heavy drinking puts me into flare and if your case was like being able drinking alcohol vs. not drinking alcohol and saving your colon, I would choose the latter.

I haven't tried remicade. Some go on long remissions with Remi
Posted 6/17/2013 11:42 PM (GMT 0)
Thank you for all the quick fee back.

Byebyeuc. Can you lead a normal life with the J-pouch? I'm very big into working out and playing sports. Really worried about the recovery time too. I'm 29

Thank you
Posted 6/17/2013 11:48 PM (GMT 0)
I'm 29 and very active too, also on 6mp and pred in the past. I personally have a long list of alternative treatments that I will try before biologics like remicade or surgery. I wasn't too scared of 6mp but the biologics all scare me badly and I don't want to give up my colon.

Those two opinions may change if I have a dramatic turn for the worse, but I would still like to give some alternative options a try before either of those two.
Posted 6/18/2013 12:13 AM (GMT 0)

Skinsfan1984 said...
Thank you for all the quick fee back.

Byebyeuc. Can you lead a normal life with the J-pouch? I'm very big into working out and playing sports. Really worried about the recovery time too. I'm 29

Thank you

Yes, you can lead a totally normal life with a j pouch. I didn't lead a normal life with UC because none of the treatments worked on me. I love my j pouch because it has given me my life back literally. Now, the surgeries are tough, I won't lie but the end result for me was totally worth it and I would do it over again in a second. There are j pouchers who are firefighters, cops, play sports, ect. ect. There is one guy on here who periodically posts his motocross videos! You can do anything you want. I work out at the gym everyday, I work, take care of my house, I cart my kids around to all their actvities. My day is full!

If it comes to surgery for you, you MUST have a highly skilled surgeon that has done many of these procedures. I cannot stress that enough. Please feel free to ask me any specific questions if you have any.

PS. I was 41 when I had my surgeries 3 years ago next week
Posted 6/18/2013 1:20 AM (GMT 0)
Very oddly drinking doesn't cause my flares. It actually seems to help. I'm not talking about getting drunk,but a few glasses of wine a night. I think I may try 6mp again before remicade and surgery. Thank you for all you're responses.
Posted 6/18/2013 1:55 AM (GMT 0)
with a j-pouch you are going to go to the can 6-10 times a day on average - is it better than having uc ? maybe -

what is your definition of normal ?
Posted 6/18/2013 2:12 AM (GMT 0)
"what is your definition of normal ?"

My definition of normal?

Simply put, how I was before the disease.

Eating what I want, doing what I want, feeling healthy.

What is not normal for me:

Is looking like a Viet Pow, eating a strange diet, taking meds or having surgeries.

All in all, the only acceptable normal for me, is PRE-UC Status without any restrictions.

I'm not into "New normals" or other definitions people give for sub-standard situations.
Posted 6/18/2013 3:33 AM (GMT 0)
but dude, by default you are accepting a new normal - what choice do you have ? you could choose another new normal, but unfortunately, the old normal isn't an option - at least not on this day -
Posted 6/18/2013 4:26 AM (GMT 0)
I have been eating normally and going to the bathroom normally for a couple years now. It is possible with the right treatment. The problem is that it's not the same for everyone and nothing seems to help anyone forever. We all have to accept that we will have ups and downs. With a j-pouch, you may not have the ups and downs but the best you will ever be may not be as good as "normal" if you judge good on number of times in the toilet. I don't think going to the bathroom a few extra times a day is a huge inconvenience compared to all of the other symptoms we face and the unpredictability but we all have to figure out what is best for us. I personally would try Remicade before surgery. Id probably also try LDN, antibiotics, fecal transplant and depression medication. I ended up healing while taking pristiq for depression. Not sure if it was related but it definitely helped me to think a little less negative. the thing about surgery that scares me the most is the few horror stories I've read. I worry, what if i am one of those? That could be a complete life changer and not for the better but the chances are probably VERY slim.
Posted 6/18/2013 4:38 AM (GMT 0)
I think like Somedude. I aim to be pre-UC. But I have to refuse the big guns because of family history.

Sometimes we don't have a lot of options. I would personally try, in your position, LDN and FM. Or the Site Specific Immunomodulators (SSIs), which is currently looking for patients for their trial. Other than that, I would go for surgery.

But rule out Crohn's first.
Posted 6/18/2013 6:08 AM (GMT 0)
I drink alcohol, rock climb, kayak, canoe and run. I use the bathroom 4 to 6 times day. I did not respond well to any preventive medications. I follow the FODMAP diet and take VSL 3 DS daily. There is no measuring or calorie counting. I tried the anti-anxiety and depression drugs. They did not stop or reduce my flares. I wish I had my j-pouch surgery 10 years earlier. Constantly fighting UC restricted my life more than I realized.

I hope you recover soon.

Szm
Posted 6/18/2013 6:21 AM (GMT 0)
I've been in remission with Remicade since 2006. However, I was past 50 when I started it. If I were in my 20's or 30's, my decision might have been different.

There are many paths to success, it seems, and we each have to pick our own.
Posted 6/18/2013 6:29 AM (GMT 0)

Subzeromambo said...
I drink alcohol, rock climb, kayak, canoe and run. I use the bathroom 4 to 6 times day. I did not respond well to any preventive medications. I follow the FODMAP diet and take VSL 3 DS daily. There is no measuring or calorie counting. I tried the anti-anxiety and depression drugs. They did not stop or reduce my flares. I wish I had my j-pouch surgery 10 years earlier. Constantly fighting UC restricted my life more than I realized.

I hope you recover soon.

Szm

What consistency are they? Liquidy/watery/mushy. I apologize for being intrusive.
Posted 6/18/2013 6:40 AM (GMT 0)
They are formed but soft.
Posted 6/18/2013 10:31 AM (GMT 0)
I was in a similar situation to you 2 months ago, flaring badly, ended up in hospital for 3 weeks! ... 5 different GI's all saying "consider surgery"!

But for me personally, at 40, I'm not ready to have bag or j-pouch. I'm not done fighting for remission. 4 great years out of 7 with UC. The 3 one year flares, were still manageable once meds were adjusted for symptom control... To me that is still much better than living without my colon and going to washroom 4-6x/day for the rest of my life. Yes biologic (all meds really) are scary, but so is life without my colon... I am realistic that one day I may not have the choice to get the surgery.. but as I told the 5 GI's .... unless you tell me my life is in danger or I'm doing more harm than good by keeping my colon..... I don't want to discuss surgery!

So I went the Remicade route. I've had 3 doses so far since late April. And even as a partial responder (meaning slow response and needed higher than normal dose.. ) I'm doing SO MUCH BETTER!

I'm down to 1-2 bm's a day, no blood , no mucous, no cramps... Still weaning off prednisone so full effect will only be known in a month or two... but I do believe Remi is working for now, and I feel pretty good!

How long will it work? no one knows... but I'm hoping for as long as it takes til research finds something else to help or CURE this condition! In the meantime, I'm gonna live life while feeling well.

Good luck in your journey. The choice is very personal YOU have to weigh all the pro's and con's for yourself.
Posted 6/18/2013 11:41 AM (GMT 0)

soystud said...
with a j-pouch you are going to go to the can 6-10 times a day on average - is it better than having uc ? maybe -

Mmmm, going to the bathroom 10x a day plus with UC with pain, blood, diarrhea and urgency.

Going to the bathroom 4-10x a day with NO pain, blood, diarrhea or urgency. (not to mention being off the drugs and being able to eat)

I will take the last one! :) I think that's what gets missed when you hear about the bathroom trips with a j pouch. It takes two seconds to empty just like you are going to pee. How many times a day does everyone pee? Think about it.
Posted 6/18/2013 2:19 PM (GMT 0)
I was at work for 8 hours yesterday and I went to pee twice. I try not to spend too much time in the bathroom. 4x a day is great but I would be willing to bet I've only seen one or two people going 4x a day after surgery. Seems most go at least 6 but often 8. I probably don't even pee 8x - definitely don't want to poo 8x - but it's a million times better than UC.

One of the girls who had surgery recently was supposed to get a j-pouch and found out AFTER surgery that she's not a candidate or she's not healing correctly for the pouch and it may never be an option. Those types of stories scare me a ton. I'd truly hate to live with a bag. I know it's not the end of the world but buying and changing supplies sounds so inconvenient. Again, it's a million times better than active UC...
Posted 6/18/2013 2:31 PM (GMT 0)

Somedude said...
"what is your definition of normal ?"

My definition of normal?

Simply put, how I was before the disease.

Eating what I want, doing what I want, feeling healthy.

What is not normal for me:

Is looking like a Viet Pow, eating a strange diet, taking meds or having surgeries.

All in all, the only acceptable normal for me, is PRE-UC Status without any restrictions.

I'm not into "New normals" or other definitions people give for sub-standard situations.

Literally couldn't agree more with this.

Everything else is just rubbish, including having a bag. (I suppose this sounds like a depressed post :-/)
Posted 6/18/2013 4:43 PM (GMT 0)
I guess I see it differently than a lot of people. I chose surgery because I chose not to suffer needlessly anymore. The trade off of a few extra trips to the bathroom each day in my opinion is a gazillion times better than dealing with UC. And wow, I certainly don't consider my j pouch sub standard. My colon was a useless piece of crap. No pun intended.
Posted 6/18/2013 4:53 PM (GMT 0)
it is when compared to normal -
Posted 6/18/2013 5:30 PM (GMT 0)
If you have UC, there is no normal; normal went out the window with your diagnosis.

I've had my jpouch 12 years; and it is far better than the 10 years prior dealing with UC. I'm a long distance international hiker (100-200miles); work out at the gym 4-5 days per week, hike every week, and do a lot of international travel for up to a month at a time. I also do long distance hikes in the Sierras every year.

I could not have done all of this had I still had UC. No way. My life with a jpouch is predictable. I can eat anything I want; I take no medication, and I never have to think twice about booking an international trip and wondering if I will be well enough to travel. Life has been great.

Sue
Posted 6/18/2013 6:24 PM (GMT 0)
I guess I will give my opinion since I've had UC for almost 20 years now and my brother has had the J-pouch for about 16 years so I have a little insight on both perspectives.

For me, I was in remission for 10 years and it really was like I was the pre-UC 'normal' as Somedude mentioned. I still couldn't eat certain things I learned upset my IBS (not my UC) like corn, carbonated drinks, raw veggies, wheat/grains, etc. But I was pretty much able to eat whatever else I wanted, workout as much as I want and do whatever I want.  It was like I just had IBS and not UC.

Now I'm back in a flare though and trying to get into remission. So for me I am sitting here hoping to get back to that 'pre-UC normal' in a way - which for me is back to the same type of remission I had. But this disease changes over time for everybody and who knows if I will be lucky enough to have that again. Knowing I had it though keeps me from really ever thinking about surgery and I also have no interest in running towards the biologics unless I'm desparate (I am not even bleeding now).

My brother, on the other hand, had UC when there were barely any drugs available. I was so bad (in the hospital like you are), going at one point 50+ times a day! Surgery was his only option at having any life. He still struggled with it but with a little research and talking to a few people at Mayo (where he was in the hospital) who had just had the surgery, he decided to have it. It was pretty new back then.  He is certainly much better than he ever was with UC but he has had plenty of pouchitis infections and even a fistula which was very painful.  He also goes to the bathroom 10 times a day but he does eat whatever he wants (and sometimes pays for it!). He drinks too. He has a hard labor job installing sprinkler/fire systems in buildings and still does his job. He has a family too.

He does always say, however, he had more options back then to try out he would have tried them all first before surgery.

 

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