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Need advice please. Feel like giving up on my colon

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Ulcerative Colitis
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Posted 1/20/2016 12:34 AM (GMT 0)
So I'm 24 years old. DX'd with UC in April 2013. For a year and a half I was able to manage my disease well with Lialda and one light round of prednisone. December 2014 I was in a horrible car accident and lost my best friend in a very traumatic way. Since then my UC has spiraled out of control, progressively getting worse. Tried all the mesalamines, steroids will not work, been on Imiran 150mg for 7 months or more. Started Remicaid the first of August and it worked well and put me into "remission".
Before my last infusion in December I started flaring again. Thought it was a little speed bump and my next infusion would tame it. The infusion did absolutely NOTHING to help. Literally made zero change. This was odd because it had been working wonders. I get infusions every 8 weeks. Had my blood work done yesterday to check remicaid levels I believe and haven't gotten the results back. Docs want to do a sigmoid colonoscopy Feb 1st to take a look. I was hospitalized twice in the past year and I feel like that's where this is going again. I just feel like getting my colon cut out sometimes to be done with this cycle.
Am I wrong to think that biologics will not work for me anymore? Haven't tried humira or any others except for Remicaid. The reason I'm worrying is because the last infusion did not work at all. I know they can increase the frequency of infusions but if it's not helping when I get the infusion I doubt that will help. Has anyone been in my shoes. I feel like my despair is a bit premature but I've been hurting for a year now. I have good days and not-so-good days but this isn't how I want to live. What's the answer in your opinion? Different biologic? I'm on cortisone enemas and budesonide and they don't appear to be helping. I've been on both of those for three weeks. Please help if you can. I'm sorry for complaining but I'm hurtin'.
Thanks and God Bless,
Garrett
Posted 1/20/2016 1:01 AM (GMT 0)
I think you need to wait for the levels. You may just need a higher dose... Since you had luck with Remicade, you might have luck with another TNF blocker. In my case, I didn't respond to remicade at all, not even for a minute. The fact that you responded means you are at least a responder & that's a good thing. Try to be patient, you have options, the results will give you some more clues.

On the other hand, I had surgery and it was the best thing I've done for myself. To know that's all in the past is an incredible feeling. Even if it comes to that, and I am sure it won't, you can live happily without a colon. I know you don't believe it's the case when you see someone else say it, it's not until you've been through it that you can say it and believe it. I saw so many people say it before I had surgery and I shrugged it off, like "yeah well, you're happy, I wouldn't be" and here I am saying, I'd rather live how I do than deal with the medications for the rest of my life. Seems like a no brainer at this point.
Posted 1/20/2016 1:28 AM (GMT 0)
So do you have the ileostomy? Or whatever it's called with the bag on the side of you? I'm curious if I could still be pretty active with that bag thingy. I'm sorry I don't know the correct terminology! I love to fish/hunt, be outdoors, and work out. Is that possible with that or would a guy have to go for j pouch if he wanted to still do that. The j pouch sounds complex with lots of risks for complications to me.
Posted 1/20/2016 1:48 AM (GMT 0)
I have a j-pouch and everything has gone pretty smoothly. You can do a ton with the ileostomy too... I had a three step procedure so I had an end ileostomy for a good 3 months. By the end, I was getting along really well with it. I didn't let it get in the way of life very much. If you're really going to consider surgery, you could always opt for the three step so you can see how it is with the end ileo and if you hate it, continue on to the j-pouch. I can tell you, don't miss needing to have supplies on-hand, but it's the same as anything. I need to have underwear, I need to have shampoo... It is actually pretty easy. The mail ordering arrived for me almost the following day so I could get whatever I needed very quickly. I recently wrote a long post about my first step of surgery. I am going to finish writing part II soon. :) You should check it out.

www.healingwell.com/community/default.aspx?f=38&m=3569886
Posted 1/20/2016 2:43 AM (GMT 0)
I went from Remicade to entyvio and have had moderate success with it. I still take oral lialda and folic acid supplement. I'd say I'm about 60%, if I were to scale it.

I'm sorry to hear about your friend in the crash. One thing that I've found through trials and have learned in school is that autoimmune diseases can be triggered by stress. During stress, our bodies produce and excess amount of WBCs. Most labs will call this a false positive when doing a complete blood count. So destressing is important in this case to prevent those WBCs from going to the site of inflammation, which for us is the colon.
Posted 1/20/2016 3:49 AM (GMT 0)
I'm sorry this is happening for you! That's crap (pun intended). I hope after your results come back in they can taylor the Remicade amount to it and that may knock it on the head again. Maybe surgery is not such a bad option? Hope it goes well! :(
Posted 1/20/2016 5:21 AM (GMT 0)
Sorry to hear you are going through so much, but sadly...many of us have been there! My UC was severe, did not respond to any drugs and was killing me....so I decided to get surgery. For many reasons, I chose to get a permanent ileostomy (the bag thingy), instead of the JPouch. It has been almost 3 years since my surgery, and I am beyond happy with my choice. I am a female and was 34 at the time of my surgery. Much like you I am very active...I fish, camp, hike, exercise (weights/cardio/yoga/etc...), and I do not feel limited in ANY way. Of course there are things to be mindful of, and recovery takes a little bit of time...but it was all MORE than worth it to be well again and living the life I want to live! Good luck and let us know if you have more questions.
Posted 1/20/2016 8:25 AM (GMT 0)
I'm relatively new when it comes to all this. I don't even have a diagnosis of UC myself as yet. What I can tell you about my own experience is that my IBD definitely came on due to stress. My marriage ended very early last year, and I had to deal with all sorts of changes as a result. I think I hung in there for a while, but eventually the stress began to take a toll on my body. Enter IBD, of a yet-to-be-named variety, after about 6 months of it.

I spent the christmas break trying to set myself up to make peace with everything that happened, and to let go of any resentment I felt toward my ex, or at the situation I was now faced with. Instead, I am choosing to live a positive life and to be a more relaxed and happy person. I'm not saying this will cure my IBD alone, but my point is, I recognised the event that probably triggered my symptoms, and have done a lot of inner work to try and stop it affecting me. I don't know whether you've considered the same thing, but perhaps you might have more success if you looked at the emotional side?

If you're interested in this phenomenon, do a google search for Dr Lissa Rankin and watch some of her videos.
Posted 1/21/2016 12:35 AM (GMT 0)
Thanks for the input. For those with an ileostomy or j-pouch, when did you decide it was time for surgery? When do you recommend someone makes that decision? Once you do it you can't go back, so I'm curious as to what made you decide and if you have any regrets and/or advice? Thanks
Posted 1/21/2016 1:04 AM (GMT 0)

Musicianfisherman said...
Thanks for the input. For those with an ileostomy or j-pouch, when did you decide it was time for surgery? When do you recommend someone makes that decision? Once you do it you can't go back, so I'm curious as to what made you decide and if you have any regrets and/or advice? Thanks

For me, pooping my pants on daily basis was the last straw. That's no way to live. Plus the pain, anemia, the nasty meds, not being able to eat....I just couldn't do it anymore. Getting this j pouch was the best decision I ever made. You just know when you're ready and had enough of the craziness. Take a good hard look at your quality of life as well as your general health. I was one sick gal before my j pouch as that's all a distant memory now. All the best to you.
Posted 1/21/2016 7:03 AM (GMT 0)
If I ever get to that point I would go the three step and try the bag, way less hard to do, the horror stories on here about the pouch are scary to read, read them.

The people that don't like them usually don't post. It can't hurt to try the bag first. That's what I would do. Cheaper and easier in lots of ways
Posted 1/21/2016 10:43 AM (GMT 0)

DMC2011 said...
the horror stories on here about the pouch are scary to read, read them.

I have to say, I've read WAY more horror stories about dealing with severe UC than I have ever read about dealing with a j pouch.
Posted 1/21/2016 2:03 PM (GMT 0)
I would like to add that it is slways just the same two or three people posting about their success with Jpouch. One or two maybe. Always just the same. For years,
Posted 1/21/2016 2:15 PM (GMT 0)

DMC2011 said...
I would like to add that it is slways just the same two or three people posting about their success with Jpouch. One or two maybe. Always just the same. For years,

That's probably because most j-pouchers are busy living their lives and not posting online about UC... The surgery has a very high success rate.

I'm grateful for those veteran pouchers who continue to contribute to the forum.
Posted 1/21/2016 2:46 PM (GMT 0)

atwoodt said...
That's probably because most j-pouchers are busy living their lives and not posting online about UC... The surgery has a very high success rate.

DMC wasn't wrong though.

The people who have a bad experience with j-pouch surgery may post a few times but they never ever hang around to become regular posters.

Me, I think I'm the only one who, if I'd had a bad j-pouch, would still be posting about it years afterward. Frankly for me an ileostomy reversal has been hell. It isn't just the rectal inflammation which is making it so either; it's the abdominal pain and extremely disturbed guts after I eat practically anything. Surgery has ruined my gut function. I do have Crohn's in my rectum, but as my GI was at great pains to point out to me, it's limited and mild (so far). Thus it's hard to see how Crohn's alone can explain my bad outcome, unless I turn out to have extensive disease and/or a stricture in the small bowel. (My GI doesn't think any Crohn's will be found there, and I think he is likely to be right. Anyway, I'm having an MRI scan on 5th Feb to try and find out.)
Posted 1/21/2016 2:47 PM (GMT 0)
DMC2011,

I have counseled at least 100 jpouch patients; as Atwoodt says, most have surgery and move on with their lives. Some of us stick around to be a resource for those that have questions. When I was researching surgery 15 years ago, there were no online groups. All I wanted was to meet someone that had jpouch surgery and ask questions.

Sue
Posted 1/21/2016 2:55 PM (GMT 0)

suebear said...
I have counseled at least 100 jpouch patients; as Atwoodt says, most have surgery and move on with their lives.

Or some have surgery and have a dreadful time, but don't wish to be seen as negative or bringing others down, so stop posting.

I guess I'm too selfish to do that. And too angry. I don't mind admitting I'm full of rage over what this disease has done to me. And surgery has only made things worse. Not my surgeon's fault - it was just pure bad luck, but I've had enough of bad luck to last me 5 lifetimes. 'It was just bad luck' is zero consolation to me - absolutely zero.
Posted 1/21/2016 3:23 PM (GMT 0)
I knew after I made that statement that perspective about them running off into the fields of daiseys and living happily ever after card would be dropped.

I personally think that is not correct.

OP JUST DONT BELIEVE PEOPLE ONLINE. Misery loves company is all I ever think when I read most if the posts.

I am in remission (knock wood) and I post occasionally.
Posted 1/21/2016 3:42 PM (GMT 0)
Just to add, I'm not intending to deter anyone from surgery who really needs it - even a crappy j-pouch outcome is probably better than severe UC for most people. I do second trying out an end ileo first though. And to seriously consider making it permanent if you are happy with it, can eat anything you like, etc. I suppose the only thing about that is that it can take anything up to a year to really adapt having an ileo - most j-pouchers only have theirs for, what, 2-3 months? That's not really long enough to gauge the long-term outcome in my opinion.

Although that said, I was doing considerably better at the 2-3 month mark with an end ileo than I was with takedown. But it did take over a year for my ileo to reach truly optimal, as-good-as-it-will-ever-be, function I reckon.

Post Edited (NiceCupOfTea) : 1/21/2016 8:48:49 AM (GMT-7)

Posted 1/21/2016 3:55 PM (GMT 0)

DMC2011 said...
I knew after I made that statement that perspective about them running off into the fields of daiseys and living happily ever after card would be dropped.

I personally think that is not correct.

OP JUST DONT BELIEVE PEOPLE ONLINE. Misery loves company is all I ever think when I read most if the posts.

I am in remission (knock wood) and I post occasionally.

Maybe they leave because they don't want to stick around this forum for this ridiculous negative perspective from people who are only speculating about J-pouches and aren't living with them.
Posted 1/21/2016 4:16 PM (GMT 0)
Gosh, I wish I could think back to all the positive stories. A few people were young and their parents posted, so the actual person was never a member, for example: Dillon, Paige, Brandon...

Then there is Byebye, Suebear, me, Rabbit, pluot, atwoodt, ronnie-lee, ks1905, susan (and these are the few I remember. There were SO many more over the years)

If you really want to look at good surgical results you should include the ileos too. There are so many people who pop in who have had ileo surgery, evalou, embers, summerstorm, robin, virdent, shaz, ucwhat, Christine, polishdan (go over to the ostomy board. it's not all that active because most people are out living life).

Then there are the few people who know next to nothing, have no direct experience and constantly bash anyone who considers surgery.

There are also a handful of unhappy people, including NCOT - who is a valuable resource and has a valid perspective but doesn't have a j-pouch.

I think it's pretty messed up to say "Misery loves company". I actually read people's stories here and I think, wow, that sounds miserable. I am doing pretty fantastic. You have to put things in perspective, I was in an 18 month flare up. My symptoms are now non-existent. I go more often than I did with a working colon, but I was never getting a working colon back. I had no option besides surgery. Surgery should really be for these cases. if you have medical options, try them. I am happy this is the outcome for me. I was sick of doctors and medicine. Sick of worrying about losing insurance and being unable to afford this stuff.
Posted 1/21/2016 4:24 PM (GMT 0)
it's not all that active because most people are out living life

People 'out living life' has clearly become the new surgery cliche. But in all seriousness, once somebody drops off the radar you have no idea what they are doing anymore.

And I'd say there's been more than a "handful" of unhappy people, particularly if you go over to j-pouch. org. (I know, I know. They're just a tiny tiny minority and don't represent the happy j-pouch folks that are too busy to post on forums and are out living their lives, have I got the patter down correctly folks?)

but doesn't have a j-pouch.

And if I did, would that really make any difference? I don't think so. Pretty sure my experiences would be ignored and discredited just the same.

Let's face it. The only reason anyone ever praises the j-pouch is because they - and they alone - were fortunate enough to have a good outcome. They literally assume that because they have a good outcome, everybody else will.

I like to think that even if I'd had a good outcome, I'd still be mindful of other people who weren't so lucky. But who knows, maybe I'd too be spending my time exhorting everyone else to have the j-pouch and to not even consider the possible downsides because if they didn't happen to me then they don't really exist.

Then there are the few people who know next to nothing, have no direct experience and constantly bash anyone who considers surgery.

Aside from woof-woof (who has been banned repeatedly and hasn't been here in years), I cannot think of one person on this board who bashes anybody for considering surgery. Literally not one single person who does this.

Post Edited (NiceCupOfTea) : 1/21/2016 9:36:43 AM (GMT-7)

Posted 1/21/2016 4:36 PM (GMT 0)
Just because I dont have one does not make a good argument keith! Thats redic.

Please read recent Blacksteeda for a blow by blow wonderful wxperience.


Im done, this is becoming unproductive
Posted 1/21/2016 4:46 PM (GMT 0)
I have a friend on my facebook, anthony, who posted here a TON when he had active UC. He has a j-pouch now and hasn't posted on HW since. I see him on FB posting, he's out doing stuff, not thinking about his colon at all. i know that's just one example, and I don't remember his username here so I can't share...

blksteeda was out of options. Surgery was his only option and he is getting there. I am sure things will level out, he will get reversed, and go on with life.

No one is saying surgery is perfect, we are just saying, if it comes to that, life goes on. This is exactly why I didn't say anything when I was having surgery. I didn't need a bunch of people telling me not to - especially people who haven't had surgery. That's like someone telling me skiing is not a worthwhile sport when they've never tried it.
Posted 1/21/2016 4:49 PM (GMT 0)

DMC2011 said...
Just because I dont have one does not make a good argument keith! Thats redic.

Please read recent Blacksteeda for a blow by blow wonderful wxperience.


Im done, this is becoming unproductive

It always does.

You can't say a critical word about surgery anymore (if ever you could) without having a ton of disapproval heaped on your head by the same few folks. You are instantly cast as "anti-surgery", or whatever if you don't toe what I call the party line about surgery, never mind what your actual views are. The party line is that surgery is a major success and the vast majority who have it are out living their lives - end of discussion. If you disagree with that, you are "bashing" surgery.

Oddly enough, Crohn's folks aren't like this at all. Even when they remain in remission, they invariably are much more realistic about the good and bad sides of surgery. Of course the UC folks will instantly dismiss Crohn's as not "counting" (even though a resection of a few inches of small bowel is far less major surgery than colectomy and creation of a new rectum).
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