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CrohnsHobo

CrohnsHobo

Joined
Nov 4, 2009
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900
Hi My Fellow Chronies,

Have not really been around lately, though I would stop by and update.

I am doing well with my Crohn's. I have been going down 1mg a week on the Prednisone and I am down to 2 mg a day currently. I am doing the 1ml injection of Methotrexate once a week and the 45mg injection of Humira every two weeks. Most recent blood tests are good and everything seems to be going Ok. I go for another colonoscopy next month then back up to UCLA to discuss my future.

My Gastro is really pushing to have my colon removed. My Crohn's symptoms seem to be under control, but I can only stay on the two injectables for so long and now after 8 months of taking them I am starting to feel really lousy the day after the drugs. Bad headaches, aches, pains, fatigued, etc.

My Crohn's has only ever been in my colon, never in my small intestine in 15 years. So having my colon out would probably put me symptom free. But I need to decide if I can deal with the bag for the rest of my life.

I am really not liking the drugs and I have already burnt through just about all the others without results. So surgery might be my best option to live a life without having to pump these nasty drugs into my body.

Other than the drug side effects I am doing good. Working a lot, trying to keep busy, etc.

I hope you are all doing well!

Chris
 
Hi Chris, Big choice to make. I understand wanting to get off the drugs. Mike has been injecting Metho for well over a year now with bi-weekly Cimzia. I really do not like this prolonged use of Metho. Noticed his hair was thinning today.
You will come to the right decision. Can the Dr. guarantee that the CD will not show up anywhere else after the surgery. I think that would be a huge concern.
Kim
 
Pyoderma Gangrenosum said:
Can the Dr. guarantee that the CD will not show up anywhere else after the surgery. I think that would be a huge concern.
Kim
Click to expand...

No. Can't even guarantee that I will come out of it without a bag. They believe they can just do an internal pouch, but no way to know until see the surgeon and they actually do the surgery. It's a risk to weigh.
 
Hi Chris- Wow what a huge decision to make - definatley a case of weighing up the pros and cons and what is best for you long term. I don't envy you having to make such a decision but I'm sure you will know what is going to be the best path for you to take.

Glad to hear you are otherwise well at the moment. I haven't posted on here much myself in the past but I have found your posts really helpful when I am not doing well... x
 
Hi Chris it has been awhile! Nyx has a bag and a few others, Nyx says she has no pain and she loves her life. If I had that option and no more pain and meds, I would go for it, but I am not a guy, maybe guys have a harder time with it? I dunno, but you can bet my life would change for the better!

Hope you decide what is best for you. Metho made me ill , and didnt work, Cimzia isnt here, and surgery for me could be in my future too but mine is in the Ileum. Keep us informed on what you are going to do. :hang:
 
I can empathise about the MTX... it really screwed with my quality of life. I'm wondering if you could reduce it to mitigate the side effects, and if your symptoms start to slide again up the Humira to weekly - it being the lesser of evils - imho. Surgery being such a one-way street.
 
Big decision for sure. Wonderful that you're doing well right now -- maybe having this time when you're doing well will give you enough of a break from just trying to get through each day that you'll find the time and space you need to plan out your next path. Either way, you'll come to a decision and will make it work for you. Am sure of that.
 
Thanks all! I wish I could use the drugs forever as they do make my crohn's better. The side effects are just awful. I had none the first four months or so, but now the day after I feel awful.

It's always something lol
 
Hiya Chris
Good to see you again!

That's a hard decision! But I'm sure you'll make the right one, just give yourself some time to weigh it all up!
good luck
xxxx
 
Hi Chris..

Good to see you again!
Seems you have a difficult decision to make...


Wishing you all the best,
Hugs~Nancy
 
Hey Chris! Good to hear from you! :)

I was thinking something along the lines of what Beth suggested as well. I have no experience with the Metho, but the weekly shots of Humira really helped me get control of my Crohn's while I started a small dose of Imuran.

Would you be on any maintenance meds if you decided to go the surgery route?

I really empathize with you. Even though I am currently feeling really good, I know there may come a time, or many times, in my life where I'll have to make a decision about changing the plan of attack to stay in remission. It's a tough season to be on, but you'll work through it :)
 
Hi Chris! Great to see you pop in again, I miss your posts! So sorry to hear about the big decision you have to make.

If you have Crohn's and they are even considering giving you a j-pouch, you are lucky. Most of the time I think docs won't do it on a Crohn's patient. I say go for it. If the pouch operation is successful, you will enjoy a great quality of life. Even if CD does end up showing up in your small intestine eventually (that;s what happend to me) you'll likely get many good years with your pouch before you have to get a bag.

And if you come out of the surgery with a bag, you'll still have a much improved quality of life.

But still, it's a big decision to make. I hemmed and hawed and couldn't decide whether to have my colon removed. Then the decision to have it removed was made for me when it ruptured. Doesn't sound like you are in danger of that happening so that is good. I understand about being on the drugs and can commiserate. I am facing the same decision myself right now - more drugs or go for the bag.

Good luck and keep us posted! - Amy
 
Go for the bag! It's really not that bad :) I love mine...never would have been able to go to college otherwise. It honestly has been a life saver. And yes, mine's permanent.
 
No idea what I am gonna do. Going to have to wait until I see the Dr. at UCLA in December and see what he says. In the past he was pro-surgery. So I am not sure that has changed.

Will have to do some research before I am a choice. Feel to uninformed on the quality of life it will give me to make a decision now. Though I think about it everyday and it weighs heavily on my thoughts.
 
Hey Chris - Glad to hear that things are under control.
Like you, I have been dealing with the CD for over 15 years and have tried practically all meds, both conventional and alternatives. I fought for a while to save my colon... big decision. I reserach and met with some of the top docs around.
With support fron Nyx, CDDAD, Jeff and others, back in July I made my desicion.
I LOVE my stoma. No more pain, no more running to the bathroom, no meds, no side effects. I can eat whatever I want. Yes, changing the bag can be some times a pain, but considering that it gave me my life back, I am the happiest men alive. I smile very morning.
Good luck
 
This might sound like a silly question for you and Nyx, but can you swim with it? Particularly in the ocean? How does it show with swim trunks? I like to take tropical vacations/cruise.

Would be bummed if I could no longer snorkel, swim and spend time at the beach.
 
Hey Chris,
I can swim, scuba, any water sport no problem. I do use special adhesive when I do water sports
 
Well on Friday I go for a colonoscopy. I am not confident that it is going to look good. I have been on Metho and Humira since February and have felt great up until about a week.

Cramping I had all of last year has come back, D has come back. I can't put my finger on something I ate or anything. Just woke up and bam! Back to where I was last year.

Because of that I am not so sure my colon will be improved at all from my last scope in May. Which means my Dr. will probably be pushing more for surgery. On the 8th I go back to UCLA to have the Dr. there look over my scope results and give me his second opinion. But he was a little pro-surgery last xmas too.

This time of year always seems to flare up. Summer I seem to do well . . .
 
Good luck, Chris! I know lots of stuff is going on right now and lots of things are up in the air. I'll be thinking about you on Friday that things go well and you are able to make the right decisions regarding your ongoing treatment and care. Hang in there! :)
 
This time of year always seems to flare up. Summer I seem to do well . . .

Chris - I hear you on that, every spring and fall. I think it's the barometric pressure. I am also facing a similar decision, depending on how the present meds go. Not an easy decision, so ask all the questions you have, everyone here is soooo great about even the most intimate topics. I have a friend who allowed me to see her stoma so I could get a realistic view of exactly what I would have, she is great.
 
I will. I am just amazed at how fast I went from solid movements and feeling great to not.

As usual when I am flaring I don't feel terrible but my colon is like an old wooden pirate ship. Creaky, gurgling, rumbling, churning, and exploding like a cannon. =p
 
I hope the scope went well Chris. Please keep us posted how you going. Good luck!

All the best, :)
Dusty
 
The scope went along just fine. As I suspected one portion of my colon was pretty ulcerated. The Dr. put me back on 20 mg a day of Prednisone. Already back to having solid movements. Amazing how fast that stuff works.

I am to stay on the Metho/Humira combo until I see the Dr. at UCLA on the 8th. The recommendation was to pursue surgery, and I have come to terms with that.

My Dr. said I can have it done here or at UCLA. So I will have to be refereed to a surgeon I suppose. I am not sure what happens after that, or what they can or will have to cut out.

So for now I am sort of in a state of limbo until I can see the Dr. at UCLA and see what he proposes going forward. I am not sure how fast these situations move once surgery is decided on. Could be months for all I know.
 
Hey Chris,

Good to hear the scope itself went well. I guess while ever you are waiting, assuming it's not a huge wait time, you can be healing and so have the least amount of bowel removed so that's gotta be plus. Good luck and keep us posted!

Take care, :)
Dusty
 
Hi Chris - Just wanted to chime in to say good luck with your UCLA appt. If you do end up with surgery, I hope it's an easy one with a quick recovery and will bring you great relief.

Glad the pred is helping - and nice to see you around the boards. I always enjoy your posts and your smiling pic.

Happy Thanksgiving! - Amy
 
Hi everyone,

Especially those that sent me PM that I never responded too. For some reason I was not being notified about them/they were getting sent to spam.

I am doing OK. Still doing the Metho shots once a week, Humira every other week, and 20 mg of Pred. every other day.

My Dr. in San Diego was recommending surgery, the Dr. at UCLA said no. I would like to do anything to avoid surgery as long as possible.

If I didn't have the insane cramping (usually in the middle of the night) I wouldn't feel to bad. I don't have D that often, usually only after I eat something that I shouldn't. My weight is steady. So for now it is just continue with the drugs above, plus Tylenol and Imodium as needed.

In June we will work on cutting out the Metho with the eventual goal to get me just on the Humira.

I hope everyone here is well.
 
Hi Chris! Thanks for popping in to say hello!!!

I hope you are able to continue okay on your current course. I have found that Tylenol is a lifesaver when things get really bad.

Is there a reason to cut out the metho if it is helping to contribute to your current "holding steady" situation?

Stick around - we miss you!!

- Amy
 
Hi Chris! Thanks for the update. Glad to hear that you are ok.
Surgery is an important decision and you will know when it is the right time. My GI, who is considered to be one of the best, did not like surgery and in retrospect I waited too long. When I went to second and third opinions, the other two were very alarmed.
Please keep up posted.
 
OMG! Chris...Haven't been on line much...I just followed this thread...Hang in there...Stay strong....What surgery are you looking at, if only a portion is not healed? HHUGG!! I was hoping for the meds held better for you....S
 
Hi everyone, It has been awhile since I said hi. I always say I want to be more active here again, just get distracted.

I am doing OK. My Crohns has not been to bad, or at least nothing I can't deal with. Still doing Metho 1x week, Humira 1x every 2 weeks, and 20mg of pred every other day. Not in remission, but not sick enough to miss any work or other regular life stuff. Cramping has been minor, usually just when I eat stuff I shouldn't, more gassy/bloated than D. I started taking VSL #3 on Friday and that seems to be helping with that more than the regular probiotic.

I did weight watchers with the GF and lost 15 pounds, so now back to my normal 155.

Only issue now is fever. About every other day I am hitting 100-101, was just over 102 on Saturday night. Was also having some trouble breathing. Last CRP was at 20 and my white blood cell was elevated. I can feel something else is going on besides just Crohns.

Don't feel terrible, or in a bad flare (I have had much worse), just generally worn down with the occasional fever. Dr. wants me to get a scan of my abdomen to see if I have an abscess or some diverticulosis that is giving me an bigger infection. So waiting for the imaging place to schedule that. Dr. also wants me to take a week off from work and rest. I am going to Disney World next week for Star Wars weekends for 5 days (hooray!). She then wants me to come back, have my scan and then take a week off work. She thinks I am burning the candle at both ends and that 15 years of Crohns is catching up to me. We shall see.

Well, I will try to be seen more and heard more. I hope everyone is doing well and flare free!
 
Hey Chris! It's so great to see you here!

I am glad to hear you are doing okay and managing your Crohn's with your current cocktail. That fever does sound a bit worrisome - glad you are going to get it check out to see if it's anything more serious....

How long can you stay on the pred at that level? Do you have a plan to wean off?

How is the Metho treating you? I think you've been on it a while now, right? I was on it for about 6 months and the side effects were hideous. I was in a fog the whole time!

Keep us posted on how you are doing. I am really happy to see your smiling face here again!!

- Amy
 
I have been on the 20mg of pred every other day since January. End of last year the Dr. at UCLA started me at 40, 35, 35, 30, etc. Down to 20 every other day. He says their studies have shown that 20 every other day is fairly safe. I know it is keeping me afloat.

I have been on the Metho since February of 2010. So a little over a year now. I am itching to get off it, I really don't like it. The side effects have not been much more than a headache/fever if I don't take a Tylenol when injecting myself. The injections themselves are the worst, they give me a bit of anxiety and I dread Tuesday afternoon shot days. For some reason the Humira does not bother me, but the Metho just makes me anxious. I think it is just the whole procedure of cleaning the area, filling the syringe, etc. Built it up to much in my head.

Tonights fever not bad, 99.5. More annoying than anything.
 
Hey Chris!

Sorry to hear you're still battling some funny stuff. I hope they don't find anything like an abscess. Those are no fun. Though, I guess in a way you are hoping they do find something. At least then they would know how to treat it, right?

Star Wars week sounds like fun! ;) Enjoy that and your week off! What a good doc, telling you to take time off!

I think giving myself injections with a syringe would make me anxious too. I hate the anticipation of how much my Humira shot will sting that day, but having to go through the whole process of preparing syringe would kill me, I think!

Thanks for updating us. I hope they can get your imagine scheduled pretty soon!
 
Thanks all!

Last night I had one of the worst crampings in recent memory. I think the delicious salad I had for dinner was a bad choice. Took forever for percocet to kick in, and even then it just dulled it a bit. My narrowing might be getting worse.

I get my scan on my abdomen on Friday, but I am guessing I wont hear any results until I get home from the happiest place on earth.
 
Scan went fine. Dr. already called, no abscesses or anything, transverse colon just looks really diseased, no real surprise there.

Small kidney stone on my left side, but to small to do anything now. I have had a couple about 10 years ago and have a family history of that, so no surprise there.

So just looks like my Crohns is still flaring despite the current meds. Really trying to avoid getting a total colectomy, but that may be unavoidable. Go back to my two gastros the first two weeks of June and they got my CT scan report, so I am sure they will have something to say about it.
 
Hi Chris,
I just want to wish you well. What ever you do. How ever you do it.
Regards
Brenda
 

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