Medications

[mikeyarmo]

What sorts of medications have you taken so far to try and treat your IBD? For my Crohn's Disease, I have been on entecort, prednisone (currently on it as well), imuran and now just started Flagyl. I have found that overall there have not been many side effects except with prednisone. That one seemed to cause a few problems, with the worst being that for a while I could not get much sleep. The funny part was even with less than 2 hours of sleep I was still able to function okay during the day. This is a big accomplishment for someone who usually needs to get 9 hours of sleep every night .

 

[jlbastian]

I was on Pentasa and Prednisone first...The prednisone with all of the nasty side effects, and the Pentasa making my hair fall out. Tried Flagyl, and Azasan with undesirable results.

Now I am on Remicade, and have been for a year and a half, and have been in remission for close to that long.

 

[MikesAngel21]

Colostomy Bag?!?!

I have a weird question... When I go to my doctors and stuff I always have a lot of questions but I never ask them because my docotrs kind of a um how should i say this... Butthole... anyways he talks about the probability of surgury. but he never really explains it too much so Im always searching ti and just freaking my self out more. lets see I got diagnosed with I was 18 Im going to be 21 and have never been in full remission, so surgury might have to be an option I was wonder about that bad thing. do you have to wear it for the rest of your life? and if not how long do you have to wear it? and with ever surgury related to crohns do u have to use one?!

 

[jyarmo]

Hey Mike.

First of all, it's a shame that your doctor is such a jerk. You shouldn't have to think twice about asking questions. Thankfully forums like this should help you get the answers you need.

I can't answer all of your questions (in fact, I suggest starting a new thread, so everyone has a chance to answer your questions, including people who do not see ths thread).

I can tell you that I had surgery for Crohn's back in December 2004. I did not have a bag. Whether you need a bag or not depends on the type of surgery you have.

 

[cookey]

I was on Prednisone for 18 yrs. Deadly drug..I don't personally recommend it, because of the awful side effects. However, I must say this...it did help in controlling my flare-ups. When I went off it in 1987...I came down with serious allergies, lose of hair over the yrs due to prednisone, and as we all know, the lovely weight gain. After all it is a steroid medication. Flagyl didn't seem to work for me, so the doctors took me off that right quick. Since 1988 after undergoing emergency surgery for an Ileostomy...I have been off all meds. Mike I'm sending you big hugs for creating this site...my little thread on my space wasn't and isn't doing anything, and it's certainly great to meet everyone.

By the way Mike, you beat me to the punch, this was the topic I wanted to start up...but you're allowed it's your site, lol.

 

[cookey]

I have a weird question... When I go to my doctors and stuff I always have a lot of questions but I never ask them because my docotrs kind of a um how should i say this... Butthole... anyways he talks about the probability of surgury. but he never really explains it too much so Im always searching ti and just freaking my self out more. lets see I got diagnosed with I was 18 Im going to be 21 and have never been in full remission, so surgury might have to be an option I was wonder about that bad thing. do you have to wear it for the rest of your life? and if not how long do you have to wear it? and with ever surgury related to crohns do u have to use one?!

Not everyone does have to wear pouches the rest of their lives. It depends how advanced you are in your disease. In my case I do have to wear mine the rest of my life. It doesnt affect me or anything I do. Actually, I can do more now, then I ever could before having the surgery. I can eat whatever I want, play sports, etc. Good luck hun, don't worry...but please make sure you have thought out your decision to have surgery before hand, if it does come down to living with a Pouch. Unless of course you have no choice like I did. It's truly not a bad thing, there is always someone else worse off then ourselves.

 

[ReeRee]

Alright, quit freaking yourself out. You may never need a colostomy. Then again, you might. It just depends on the type of problems you are having and where in your intestines you are affected the most. I have one right now that is my 2nd temporary one. It's not as bad as you think. I was terrified and thought I would be doomed to spend the rest of my life alone. But it's really not that bad, plus it cuts down on the toilet paper bill..lol. Come on, laugh a little.

I hate that your doc is a butthole. Is there any chance of changing docs? I know that here, I've got the only one for 100 miles so I'm pretty much stuck with him. But he's turned out to be a good guy, even tho he was a real pain in my butt for a while when I first started going to him. My advice is this....when you find something online you have a question about, print it out and MAKE him explain it to you. Demand it. He's working for you! Learn to be more active in your own care. It's tough, but it can be done. Be assertive, be demanding, ask questions, and don't stop till you're satisfied. (wasn't that a song in the 80's?)

 

[cookey]

LOL LOL, I love your humour and attitude Ree Ree...and the song was Don't stop till you get it on, ...I think

 

[ReeRee]

Yeah Cookey, I think you're right. Or was it 'don't stop till you get enough'. Maybe I was thinking 'I can't get no satisfaction'...hahaha.

 

[shaspons]

I have a weird question... When I go to my doctors and stuff I always have a lot of questions but I never ask them because my docotrs kind of a um how should i say this... Butthole... anyways he talks about the probability of surgury. but he never really explains it too much so Im always searching ti and just freaking my self out more. lets see I got diagnosed with I was 18 Im going to be 21 and have never been in full remission, so surgury might have to be an option I was wonder about that bad thing. do you have to wear it for the rest of your life? and if not how long do you have to wear it? and with ever surgury related to crohns do u have to use one?!

Do you have Crohn's or Colitis? Where is it active this is what will determine if you have to have a permante Colostomy bag. Sorry for the poor literary skills. Never like English Class, Typing, Spelling you get the jest.

Shawn

 

[jlbastian]

Don't worry so much! You should know by now that it only makes things worse!

I recently just had a bowel resection, and I had actually been in remission for over a year. There was some scar tissue that had formed in my terminal ileum and ileocecal valve when the disease was active, and it caused an obstruction. So, they just went in and took out the section. Not all surgeries end in a colostomy bag! Mine was actually all done laproscopically, so I only have one small incision through my belly button and two tiny ones on my left side. No big deal!

You're going to worry yourself sick! If you do end up having to have surgery, my best advice is to do a lot of research on nearby teaching hospitals (out is the Medical University of Ohio) where they are constantly figuring out new procedures. It saved on my healing time by like a month!!!

Best of luck to you

 

[ReeRee]

I've been on so many different drugs for this over the years I doubt if I could remember them all. So here's a list of what I'm on as of now:

Methotrexate
Donnatol
Aciphex
B12
Flintstones Vitamins
Allegra (for allergies)
Elavil (for depression and pain management)
Prozac ('cause I'm wacked in da head! kidding. No she's not. Yes I am. Don't listen to the other voice. She's really crazy. No I'm not, don't scare these people.)

 

[cookey]

Hi everybody, hope you're all having a great weekend. Just stopped by to see my crazy wacky friend...talking to her other voice...lmao. Little does she know I've fallen on the floor and I cant get up, lmao. Oh God, you kill me!!
Is this allowed Mike? To be chatting about nothing right now? Hugs to all.

 

[ReeRee]

HEY girl! How's it going? Ready for your company?

 

[mikeyarmo]

This land is your land....

Is this allowed Mike? To be chatting about nothing right now?

This is your place just as much as it is mine. Do whatever feels right and makes you feel good!

Just maybe gives us all a warning if you are going to remove your shoes and socks and put your feet up

 

[cookey]

Oh gosh no hun, I'll spare ya'll the torcher of me taking off my shoes and socks. Big hugs to you sweetie, you're the best. I'm feeling right at home here. So, maybe I will take off my shoes and socks...

 

[cagfire]

I have a weird question... When I go to my doctors and stuff I always have a lot of questions but I never ask them because my docotrs kind of a um how should i say this... Butthole... anyways he talks about the probability of surgury. but he never really explains it too much so Im always searching ti and just freaking my self out more. lets see I got diagnosed with I was 18 Im going to be 21 and have never been in full remission, so surgury might have to be an option I was wonder about that bad thing. do you have to wear it for the rest of your life? and if not how long do you have to wear it? and with ever surgury related to crohns do u have to use one?!

You are scaring yourself for no good cause. If your doctor is an arsehole tell him. Tell him you are scared. Make a list of questions before you go and fax or post or email them to him. Put him on notice. Make him listen to you! But to do this you have to become informed and educated about your crohns.

I always worry about having a bag but I know that my doctors have done the camera up the **** shute first, they have done xrays, barium follow thrus etc so they are well aware of what they are facing. If you do need a bag your doctor would be preparing you for it most likely.

If you've not had any surgery for your crohns then I can understand your fear, but don't let it take over.

Also, in Australia a bag is never a finality. I don't know about other countries but they have a procedure here called a 'j' pouch where you have a bag for a year or two while the bowel rests and then they re-attach the bowel and remove the bag and stoma. I'm no doctor or bag patient so please guys, don't shoot me if I have that wrong.

If you Ulcerative Colitis the only cure is a bag due to total removal of the large bowel. If you have crohns, it's only one of many, many options and is usually a last resort option.

 

[Jeff D.]

All I take are 6mp and acidopholus

J

 

[Sparrow]

currently taking Pentasa, Prednisone, Sulfasalazine, metronidazole, lactobacillus acidophilus, triazide and atenolol for bp probs from pred, and starting the meth injections soon..