Low On Options - Saw GI Today - Hard Decisions

As most of you know, I've been feeling sick for a while now with mono-like symptoms. I've desperately wanted to not have these as an issue, so I saw my GI doctor today... thinking that Remicade is probably helping to induce these, and that maybe I should break from it for a while.

The stark reality of the situation is that my doctor is almost certain I will flare if I stop Remicade. He reluctantly gave me the option of taking a 4-8 week break from Remicade, but advised against it. He told me I could switch to Humira right now and see if I get less side-effects. OR, I could take that break and then choose Remicade or Humira at that point. He was clear to point out that if these options fail, surgery is very possible, soon. My last option was to simply continue on the Remicade as scheduled, and deal with the issues.

I've chosen the last option, to continue as I've been doing, and to deal with the issues. Remicade has me in a good remission, and I want to milk it for as long as I can... in hopes that better understanding and treatments come about in the near future.

I want to mention LDN to my doctor, but today the appointment was long already as we discussed these options... so I will discuss it at my next appointment in six weeks.

I don't know, I just am trying to deal the reality of the situation. I was ready to try a break from Remicade and go back down to lesser drugs, but my doctor said that he's never seen that be successful. I've done so much alternative treating and researched to no end, and now I just want to trust my doctor for a while. I need to let it be in his hands, and have faith that things are going to work out.

I'm not sure if this is more of a vent, or asking for advice, or what. I feel like I will be fine, but I guess I always have this hope that I will be able to keep my colon and be able to be just fine... without a risk of surgery possibly happening at any time in the near future. I talked this over with my mom (a nurse, who's very rational), and the best thing at the moment considering I want to not have surgery, is to deal with the mono-like symptoms and accommodate my lifestyle to them. It's preferable to work 3-4 days a week and not make as much money, rather than lose my colon and take the risks of surgery because I couldn't slow my life down.

Thanks q.

I haven't done a pro/con list yet. I should do that soon... and will.

I really want to play all options out fully. Since Remicade has me in remission, and a lot of days I'm able to function happily although I'm subdued by body aches and fatigue pretty often, I will wait for now. A rash decision isn't in my best interest.

I'd like to exhaust Remicade, then try LDN and lesser regular meds. Then I would try Humira if signs pointed towards decreasing health.

What does your mom say about the situation?
Has she had any experience with patients who have had the surgery?

If I were in your position, I think I would have made the same decision. Things change all the time.
I think trying LDN before surgery would also be a good idea.
If you don't try everything possible, you may regret it.

I don't remember if you talked about this before. Have you sought other opinions? Consulted a Naturopath?

I ask you this because 3 doctors (a GI and 2 Colorectal surgeons) agreed that I should have my colon removed and they were all wrong. I'm really glad at this point that I held my ground.

Hang in there.

I can feel how hopeless you must be Thoreau. Keep talking. We're all here to give you support and even chime in with our advice when needed.

I know it's so hard not to be afraid of surgery but my goodness, you won't be sick anymore. I was where you are right now 3 years ago scared to death and NOT wanting surgery. But I knew I couldn't go on like that.

So sorry you are in this situation right now. Hope you can gain the strength and wisdom to figure it out. Best wishes.

Have you been to a naturopathic doc? They might have some ideas about how to get your energy, body balance back, without changing your traditional therapy. Those just-not-feeling-right symptoms seem to be what they specialize in dealing with.

Somedude said...
You know what the problem is? We have too much options. That's right. As humans, we like to be told what to do.

If surgery was the only treatment for this disease, we would all do it and not have a second thought.

If surgery couldn't fix UC, it would never cross our minds and we would cycle meds like the other sections of this site.

Because we have options, we hum and haw and we sigh...do I stop remicade? do I take this or that...etc etc...

this is the problem.

I like this, and agree. But... if it were any easy decision to have surgery it would have been made years ago.

There seems to be a methodical order to progress through treatments. There are also alternatives for UC treatment that sound promising, mainly LDN and fecal transplant. I think it's okay to go through them with hesitancy, rather than jumping into a surgery that is by no means non-invasive.

quincy said...
Yeah, we may have lots of options...but not all of us choose them all.

Thoreau...I think quality of life is what you need to look at, and it's great that the Remi is giving you remission from UC symptoms. Are there any other treatments for Mono out there that could help with your symptoms while on Remi?
Don't know if that's feasible, however...
I'm going to suggest the L-Lysine again, have you looked into that?

Regarding going down the path of surgery (I only meant looking into process and consultation as summerstorm suggested), it's understandable you'll put it on hold since you are having a reprieve from UC symptoms, but you have nothing to lose to find out info in a proactive way.

q

I did the L-lysine quite a bit. My bottle is about empty now. I could get another bottle and try it out steadily again. I can't say if it helped or not before, but I definitely took a lot of them!

I think the best treatment for my symptoms is just rest. I can feel dead one day, and almost normal the next. I can only think it must partially be the way and amount of rest I get.

I'll talk to my GI doctor about getting a consult with a couple surgeons at my next appt in 6 weeks. I plan on regularly seeing my GI doctor every month now, and pushing strongly for any and all options and paths available.

Thank you for always listening.

Not all of us make those choices. I had my GI tell me I need to be on Remicade. I refused. I can't stand when someone makes the decision for me.

If I'm taking the medication to hold onto my remission it will have be good. The cons are too far and wide for me with some medications. So I went with LDN. If that stopped then surgery it is. I'm not pro, or against it. I'm just against cancer. I've seen it, and it scares me more than this disease. And it won't get me to where I want to be in 80+ years.

And I think that's what you have to ask yourself, Thor.

Thoreau... i to am at a similar stage to you went to see my GI doc yesterday and asked if i had considered surgery where he basically said its removing of all your colon.

The thing that scares me is im 25 years old and really dont want to walk around with a bag on i try to play alot of sport like football (soccer) and swimming when im well enough and the though of having something sticking out my side is terryfying not to mention the embarrasement intimatly with my girlfriend.

I live in Nottingham England and apparently Remicade is not yet authorised to give people with UC in my area just people with Chrons, ive noticed on here everyone has been offered remicade i feel very frustrated that i havent even been offered it or humira or the fecel transplant.

Also bit of advice that made me feel better the iron infusions perked me up know end.

Cheers

derby county said
"Also bit of advice that made me feel better the iron infusions perked me up know end."

I was going to ask if you were taking iron supplements.
I know how tired/weak I feel if my level gets low.

Have you seen the LDN-related post by InSoFla...last one under U C Resources?
"If your doctor won't prescribe LDN for you, please email me and I will explain how you can get LDN.
If you have any questions on any aspects of LDN, please email me: "

Take a look.

I completely understand and relate to your desire to try everything before surgery, yet also coming to terms with the idea of surgery at the same time. I can't imagine living with this awful disease for as long as you, and others here, have been doing. I was DX with mild proctitis a little over 7 months ago. Easily reached and maintained remission with Canasa and was completely back to normal. Then in late November I flared with a fury and now have (at least) moderate to severe left sided ulcerative colitis. I never knew I could feel as terrible as I have for the past 2 months. Ends up I am steroid refractory and was WAY too sick to try a bunch of different, less serious meds, or diet mods, etc... in hopes that they might work....I never would've made it. So much to my dismay, my first serious flare has ended me up on a high dose of pred, that is doing nothing for me, and on Remicade, which seems to be helping. Sorry....I took a long time getting to my point.

Eventhough I've only known I have UC for 7 months, and only had one terrible flare, I have definitely thought about surgery and my doc has mentioned it as a possibility at some point. Having seen how sick I can get, the serious medication I needed to even feel slightly better....knowing how my MILD UP went to serious UC SO quickly....I can't help but wonder if things will get worse and if surgery will one day be my best option. Is it ideal?? Of course not...and I will try any options I am able to before it comes to that, but I also know I could get so sick so fast that I won't have time to think about it then, so I've tried to come to terms with it some now. I've even thought I would just get a permanent bag so as to not have to worry about all the possible issues that come with a J-Pouch. I know that it is so very possible to live a full, happy and active life with a bag, and I think it could work for me.

Not sure if this is of any help....just another point of view on thinking all of this through, from someone who hasn't had a fraction of the struggles you have had. Good luck and good health!!