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[cyano]

I have collagenous colitis; it's an uncommon type of colitis and generally much more mild than Crohn's disease. However, I had a major flareup on my first year of the tenure track and I lost 30 pounds. I think stress plays a bigger role than I admit. Several colleagues hinted that I might need help with anorexia and I finally explained to a few people I trusted  what was going on. Now I am fairly open with my colleagues and students.

When I'm having a flareup, I definitely don't eat before teaching or meetings. I also occasionally put a trashcan outside the door and carry babywipes to class in case I don't feel well and can't keep things down. I also keep a change of clothes and a package of babywipes in my office.

Asacol quit working, but fortunately entocort is working and my doctor has agreed that long-term use of a mild steroid is better than flare-ups. Even entocort seems to suppress the immune system enough that colds lasts for weeks. So I usually try to not touch anything (face, computer, phone) after touching my students papers until I wash my hands.

It must be tough to deal with the surgeries and maintain your energy. Feel free to PM me. Sometimes I think the hardest is the uncertainty, the not knowing how you'll feel tomorrow let alone in a few months.

[shambelle]

Apparently, I can't edit my own post... weird...
Anyway, I wanted to correct something below. I was tired... and now as I sit in an airport killing time, I see that I'm not very good at typing after all.   :)

There's another topic in and of itself - traveling with IBD... oh, what fun!

Being alive is worth the side effects. Is that selfish? Perhaps - but my GI doc - who will be working closely with both my surgeon and my gynecologist once I am pregnant - has said that the worth worst thing I can do to my unborn child is not treat my disease. That's enough for me to realize what I needed to do, and what I will continue to do.

I am a pharmacist and I have Crohns disease. I went through it all and back. It's not easy to be able to do your job at work and at home. The moment I found that I have Crohns I knew that I don't want to be on medications forever. There had to be another way. It's unusual to hear this from a conventionally trained pharmacist. But I was looking for more natural ways to heal my condition. I found great success with acupuncture, herbal prepartions, homeopathic medications, yoga, breathing techniques and many more. I started my own site and I add more and more interesting information to it. I hope you will find it very helpful http://www.journey-with-crohns-disease.com. I wish you all the best

Untreated or insufficiently treated Crohn's can lead to irreversible complications and even death. CAM can play a vital role in the treatment of Crohn's and UC, but someone who discontinues allopathic medications against medical advice is probably playing with fire.

[spork]

I am a pharmacist and I have Crohns disease. I went through it all and back. It's not easy to be able to do your job at work and at home. The moment I found that I have Crohns I knew that I don't want to be on medications forever. There had to be another way. It's unusual to hear this from a conventionally trained pharmacist. But I was looking for more natural ways to heal my condition. I found great success with acupuncture, herbal prepartions, homeopathic medications, yoga, breathing techniques and many more. I started my own site and I add more and more interesting information to it. I hope you will find it very helpful http://www.journey-with-crohns-disease.com. I wish you all the best

Go peddle your witch-doctory elsewhere.

[shambelle]

Teehee.
Before I wrote out my response, I considered the following instead:

"Quack!"

...maybe that would have been a better - or at least funnier - option!

I am a pharmacist and I have Crohns disease. I went through it all and back. It's not easy to be able to do your job at work and at home. The moment I found that I have Crohns I knew that I don't want to be on medications forever. There had to be another way. It's unusual to hear this from a conventionally trained pharmacist. But I was looking for more natural ways to heal my condition. I found great success with acupuncture, herbal prepartions, homeopathic medications, yoga, breathing techniques and many more. I started my own site and I add more and more interesting information to it. I hope you will find it very helpful http://www.journey-with-crohns-disease.com. I wish you all the best

Go peddle your witch-doctory elsewhere.

[burglar]

Dr Jill Smith, professor of medicine at Penn State, has had some success in phase 3 trials on Chrons disease using LDN (low dose naltrexone).  Enough success that the NIH gave her $500,000.00 for continued study.  Some doctors are already using LDN off label.  Since naltrexone in an orphan drug the drug companies will not sponsor any studies so if you can get your doctor to try LDN it will help all of us.

[see_wolf]

Just found this thread... I was diagnosed with UC in 1999, after a very short, intense episode.  I have been hospitalized twice for it, but it has never affected my job, as both were in the summer.  Recently, I have had an acute flare up, and just started prednisone (60mg) yesterday.  We tried entocort for a week (new med for me) but it made me very ill, so my doc gave me the option of oral or IV (& an admission to hospital) pred. I chose oral.  I was having trouble taking care of myself and house - just showering and dressing was becoming a chore, neve rmind scooping litter and cleaning and other house hold stuff.  I'm going to plug away at it, a little at a time, today and tomorrow.

Trying to figure out how to deal with classes and my job.  I'm an adjunct, and only have Tu/Thurs classes, but work at the college full time (in sports medicine).  I'm hoping things settle down to be functional by Monday.  I took Friday off, which is rare for me, but very very needed. 

[shambelle]

Hey, see_wolf! Thanks for finding this and writing!   :)

I would be so happy to stop being hospitalized during the semester... its happened 3 out of my now 7 times. Awesome. I guess those odds are still pretty good, though. Unfortunately, all of that has been clustered in the last 2 years, and the last two times where in the past 3 weeks (surgery + complications).

I think I mentioned previously, but I am very lucky to be steroid-independent. It's really strange, because I have really bad Crohn's. I do count my blessings - pred scares me - I had a cat that had to take it.

I know exactly where you are with every day things being difficult. One of the things that has bothered me the most is something you mentioned - I love having an incredibly clean living space, and I actually really enjoy cleaning. I hate how messy my place seems to be right now, and it also really bugs me when I don't have the energy to scoop my cat's boxes, too. My kitty seems to understand, though, which is wonderful.  :)

It's so hard to figure out how to deal. My job is different than yours, but I have many of the same issues, I'm sure. Feel free to send me a private message if something arises as you try to deal with work that you don't want to post up here!  :)

Just found this thread... I was diagnosed with UC in 1999, after a very short, intense episode.  I have been hospitalized twice for it, but it has never affected my job, as both were in the summer.  Recently, I have had an acute flare up, and just started prednisone (60mg) yesterday.  We tried entocort for a week (new med for me) but it made me very ill, so my doc gave me the option of oral or IV (& an admission to hospital) pred. I chose oral.  I was having trouble taking care of myself and house - just showering and dressing was becoming a chore, neve rmind scooping litter and cleaning and other house hold stuff.  I'm going to plug away at it, a little at a time, today and tomorrow.

Trying to figure out how to deal with classes and my job.  I'm an adjunct, and only have Tu/Thurs classes, but work at the college full time (in sports medicine).  I'm hoping things settle down to be functional by Monday.  I took Friday off, which is rare for me, but very very needed. 

[lolar2]

I guess I should check in on this thread. I have either Crohn's or UC, depending on which doctor is looking at the exact same lab results. I don't feel like posting much about the particulars right now but I want to identify myself! I feel the need to represent. :) (By the way if the lawyer who talked at CCFA was Jennifer Jaffe, I know her.)

[shambelle]

I'm bumping my own thread to ask a question...

For any of you that have taken Remicade, or know people who do - have you or those people deviated from the normal maintenance protocol of having infusions every 8 weeks? It looks like I start getting really sick 6 weeks after an infusion, so when I go for my next one this week, we're going to have to talk about going from 8 weeks to 6 weeks between infusions.

Thanks for any experiences you may have! I'm just curious if infusions get more frequent, do people eventually reach a point where they'd need it even more often than every 6 weeks or so. I might just need to do it for a while since I'm still really sick and far from remission; maybe I could get back to every 8 weeks some day.

Sorry that my writing sort of stinks in this post. Exhaustion has taken its tool on my brain.

[lolar2]

I've heard of people taking it more often. At that point they are, of course, more likely to get side effects, but it isn't unheard-of. I blew out most of my veins on Remicade five years ago, so I'm on Humira now.