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Think I am done with Humira

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Ulcerative Colitis
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Posted 2/23/2015 3:28 PM (GMT -5)
Just need the "Next Thing".

Not as effective as Remi was. Using it weekly. I sleep through the nights, so I am not miserable.

Thinking more and more of surgery. Kids asked me last night when I was going to take them on a camping trip. That made me think of surgery more, lol. Would like to be able to do that again.
Posted 2/23/2015 3:47 PM (GMT -5)
Dr-A,

I really like my surgical outcome but you can't count on being able to sleep through the night with a j-pouch, especially the first year of so. I have been very fortunate with my j-pouch and being able to sleep through almost every night but I didn't expect to be able to sleep throughout the nights with my j-pouch.

For me having a j-pouch is so much better than living with severe UC.
Posted 2/23/2015 3:50 PM (GMT -5)
Remi and 6-MP were the only medications that ever worked for me; once Remicade stopped working nothing else including Predisone got me back into remission. I feel healthier now after my colectomy then I ever felt even while in Remission with UC.
Posted 2/23/2015 3:59 PM (GMT -5)
It certainly doesn't hurt to have a consult, especially if you already haven't.

TBH, not being able to do things with my kids would very likely push me over the edge when it comes to surgery.
Posted 2/23/2015 4:03 PM (GMT -5)
Simponi or entvyio are the other medications you may not of tried. How bad are your uc symptoms currently?

I've gone tent camping when having 4 bms a day (I'd typically go several times within a couple hours first thing in the morning, and once at night). It was doable, just reserve a campsite near the toilet, choose a campground with flush toilets (over composting toilets, and portotoilets). Some campgrounds have real nice restrooms with many toilet stalls, showers, etc. Or if you have an RV, then you have your own, safe toilet.
Posted 2/23/2015 4:10 PM (GMT -5)
I love the idea of an rv. If you dont have one you can rent one.
Posted 2/23/2015 4:19 PM (GMT -5)
Generally state-campgrounds are cheap and primitive (no electricity, composting toilets). The privately owned campgrounds are a lot more posh, e.g., KOA campgrounds have nice toilets, showers, pools, basketball courts, laundromat, store, etc. KOA campgrounds are available in many states and are consistently high quality facilities. Grab the smores, mosquito-spray, and prepare some campfire songs, I say :-)
Posted 2/23/2015 5:12 PM (GMT -5)
I would say it's a very drastic step and one that requires careful consideration and planning. What are your symptoms? Have you exhausted all options in the alternative realm? Are you really sure your pathology is limited to just the colon? Are you willing to deal with and adjust to the complications afterwards (pouchitis, possible crohn's necessitating continuation of humira and other medications, increased risk of infections). This was the rap given to me by a very intelligent locum GI when I begged for surgery two years ago. Most importantly, I think you genuinely have the right to know that it is NOT the cure, despite what people are saying about it.

Post Edited (Guardian7) : 2/23/2015 3:15:31 PM (GMT-7)

Posted 2/23/2015 6:05 PM (GMT -5)
But - a lot of people who have had the surgery are the ones saying that they have gotten their lives back and do pretty much whatever they want, including camping. It's not just a case of the medical profession trying to con us. Cure or no cure, getting your life back would be a blessing for many.
Posted 2/23/2015 6:13 PM (GMT -5)

garylouisville said...
But - a lot of people who have had the surgery are the ones saying that they have gotten their lives back and do pretty much whatever they want, including camping. It's not just a case of the medical profession trying to con us. Cure or no cure, getting your life back would be a blessing for many.

There are other ways to get your life back. wink
Posted 2/24/2015 12:55 AM (GMT -5)
What ages are your children now? / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 2/24/2015 10:20 AM (GMT -5)

Guardian7 said...

garylouisville said...
But - a lot of people who have had the surgery are the ones saying that they have gotten their lives back and do pretty much whatever they want, including camping. It's not just a case of the medical profession trying to con us. Cure or no cure, getting your life back would be a blessing for many.

There are other ways to get your life back. wink

I think the OP is more interested in being able to spend quality time with their family. Surgery gives Dr-A the best chance of that happening.

Surgery is not a panacea but it is one of the best chances of getting your life back from UC.
Posted 2/24/2015 10:45 AM (GMT -5)
What has been the hardest part for you Kieth?
Posted 2/24/2015 11:01 AM (GMT -5)

DMC2011 said...
What has been the hardest part for you Kieth?

I wouldn't use the term "hardest" because the whole thing is difficult but it isn't impossible and was actually less painful then I expected.

I would say the "worst" part was not doing it sooner, I suffered for years because I didn't want surgery. I only wish that I had chosen to have surgery sooner. I was so sick at the time that instead of 3 months of living with a bag that it was over 9 months. If I had surgery years ago when I was healthier then I could have possibly done it in 2-steps in about 3 months.

I had no issues living with a bag because I felt so much healthier, when you are that sick all you want is to feel healthy again.
Posted 2/24/2015 11:16 AM (GMT -5)
I had surgery 14 years ago and got my camping/back packing/long distance hiking life back. I logged thousands of miles with my jpouch. 200 mile international thru hikes, the John Muir trail, the Grand Canyon and long hikes in Turkey, Patagonia, Wales, England, Scotland, and Ireland. This summer I head to Iceland for 3 weeks of hiking/camping. I could not have done this with my UC. I can do it with my jpouch. Life post surgery has been very very good.

Sue
Posted 2/24/2015 11:34 AM (GMT -5)
I believe in trying in any way you can to avoid surgery but to live a miserable existence for decades because you refuse surgery seems crazy to me. One year of your life is forever lost. Same thing holds true for 5, 10, 20, and 30 years. By the time some finally cave in to surgery it's almost time to sit out on the front porch and rock in the rocking chair.
Posted 2/24/2015 11:50 AM (GMT -5)

suebear said...
I had surgery 14 years ago and got my camping/back packing/long distance hiking life back. I logged thousands of miles with my jpouch. 200 mile international thru hikes, the John Muir trail, the Grand Canyon and long hikes in Turkey, Patagonia, Wales, England, Scotland, and Ireland. This summer I head to Iceland for 3 weeks of hiking/camping. I could not have done this with my UC. I can do it with my jpouch. Life post surgery has been very very good.

Sue

Very envious of your hiking list. I've only done small segments of the Appalachian trail, and other areas in New Hampshire, Maine, and Pennsylvania. I'm in remission but money and time are factors...
Posted 2/24/2015 2:35 PM (GMT -5)

ks1905 said...

Guardian7 said...

garylouisville said...
But - a lot of people who have had the surgery are the ones saying that they have gotten their lives back and do pretty much whatever they want, including camping. It's not just a case of the medical profession trying to con us. Cure or no cure, getting your life back would be a blessing for many.

There are other ways to get your life back. wink

I think the OP is more interested in being able to spend quality time with their family. Surgery gives Dr-A the best chance of that happening.

Surgery is not a panacea but it is one of the best chances of getting your life back from UC.

We'll have to agree to disagree on that one. It is in the realm of possibility to spend quality time with family without surgery. I don't want to say anything further since it might turn into an argument on treatment modalities. I wish the OP the best in whatever he decides to do.
Posted 2/24/2015 2:54 PM (GMT -5)
I don't want to inflame this thread either but it is important to note that Guardian is right in that it is in the realm of possibility for many to spend quality time with family without surgery. Unfortunately, there are those where it is not in the realm of possibility. Many here have lived a miserable life with unquality time with family for decades, finally opting for surgery, and then kicking themselves for all the quality time they unnecessarily missed out on because of being so stubborn. I think it is important to fight the good fight but to have enough sense to know when it is time to surrender and run up the white flag. Dr-A has always seemed very knowledgeable about this disease and open to anything from meds to alternative therapies so I respect his judgment as to being intelligent enough to know that quality time with his family is more important than fighting what has so far been a losing battle with no end in sight. I've been doing quite well so far but if my time ever comes I hope I'm smart enough to know when to stop the charade and get on with my life.
Posted 2/24/2015 3:02 PM (GMT -5)
Inflame the thread. har har
Posted 2/24/2015 4:06 PM (GMT -5)

Old Hat said...
What ages are your children now? / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)

3, 5, 6 I just hit 40.

suebear said...
I had surgery 14 years ago and got my camping/back packing/long distance hiking life back. I logged thousands of miles with my jpouch. 200 mile international thru hikes, the John Muir trail, the Grand Canyon and long hikes in Turkey, Patagonia, Wales, England, Scotland, and Ireland. This summer I head to Iceland for 3 weeks of hiking/camping. I could not have done this with my UC. I can do it with my jpouch. Life post surgery has been very very good.

Sue

That's pretty awesome. Just the mention of a trip sends my mind into a whirl, lol.

Post Edited (Dr-A) : 2/24/2015 2:23:44 PM (GMT-7)

Posted 2/25/2015 1:37 AM (GMT -5)
Amazing, I recall when you announced your daughter's birth, which was such happy news at the time. RE trips with kids: if you remember Paul L posting from Toronto, he delayed surgery 'til his daughter was about 8. (He took the family on a relaxing cruise in Alaskan waters with UC & sent us links to his photos.) I think Scrap Girl was another forum member who posted about having surgery (while managing 3-child household); her older 2 attended school & were o.k. with her recovery needs but it was somewhat harder for her 4 yr-old to deal with. So, between your family & your practice, you would have to gauge what time surgery & adaptation would likely be most reasonable to manage. In the meantime, it's definitely a plus if you get adequate sleep nightly. (And i-poop gives good advice RE camp sites.) Best wishes! / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 4/8/2015 8:27 AM (GMT -5)
GI visit yesterday. Discussed the past year. Stopping the 250 mg AZA and Humira. Moving on to Entyvio. Kinda neutral on it feeling wise. Guess I am saving the excitement part for when I see something actually work, lol.
Posted 4/8/2015 8:43 AM (GMT -5)
I was on Humira for 15 months, stopped it because there was no improvement in my UU.
Switched to Entyvio 6 months ago , much better .
I am down to 1 or 2 solid BMS a day .
Have more energy, and have put on sme weigt.
I wasat 95lBs the last years, now weigh 110, better on my5ft 6 inch frame. Hope you get results to. turn
Posted 4/8/2015 8:55 AM (GMT -5)
Joan -- I was reading your sig. You were diagnosed when you were over 80! I just can't imagine dealing with this disease at that age. I hope you continue to do well with Entyvio!
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