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Anyone notice that UC and Crohn's have the most posts on here?

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Posted 10/21/2008 10:54 AM (GMT 0)
I just noticed that UC has 90.000 posts and the Crohn's board has 100,000 posts...way more than the other boards.  I find it very interesting.  Maybe it's because it's such an "embarrassing" illness so we come here for support since it's hard to talk about with people who don't have the disease. Maybe it's because most of the medications don't work for most of us and we're all trying to figure out how to treat this disease without surgery. 

One thing that I find so weird is that I've had 4 GI's so far.  Every single one of them ends up acting shocked that most of the meds don't work for me.  They treat me like I'm a freak of nature but then I come here and find that most meds don't work for a lot of the people posting here.  I've had doctors at University of Michigan and Cleveland Clinic, so they are supposed to be some of the best and they still act like I'm their only patient who doesn't respond to the meds.

Posted 10/21/2008 11:23 AM (GMT 0)
Yes, I sometimes feel like a freak because I have reactions to certain medications that others normally don't. In fact, my GI refers to me as one of his unusual patients. As for the posts, yep - I think that because of the natures of these conditions that when someone finds people that can truly relate, they can't stop talking! :)
Posted 10/21/2008 12:14 PM (GMT 0)
Sherry-Since we're both from Michigan maybe it's only Michigan girls that don't tolerate any of the meds..lol.
Posted 10/21/2008 12:17 PM (GMT 0)
Hmm or maybe it's the water here in MI that makes us intolerant to meds??? :) I KNEW it just wan't right when I pulled in that fish with 3 eyes from Erie! *j/k*
Posted 10/21/2008 12:18 PM (GMT 0)

glamourgirl - I am in the same boat.  So many doctors act as though I am unusual because my UC has not responded favorably to any medication I have taken to date.  I haven't taken all that is available because, honestly, some drugs scare me...like Imuran and Remicade.  I have been so depressed over this lately.  I want to live like I used to live.  My husband and I used to take day trips to New York frequently..getting up early, driving there, enjoying the day, and driving home.  We can't do that anymore because I have such a hard time in the mornings.  I get up between 5 - 6:00 AM and I am lucky if I feel as though I can leave before 10:00.  Some days, I am good after 10:00 and some days I am running to the bathroom the rest of the day.  It's so uncontrollable that I don't have time to find a bathroom in a public place.  I don't know what to do anymore.  I sit in my house so much because I am afraid to leave. I just never know if it will be a good day.

I seems as though every doctor I have seen has the same approach to treatment and they act as though it helps most people.  I doesn't help me!!

Posted 10/21/2008 2:01 PM (GMT 0)
Perhaps it's likely that people with UC and a more serious condition post on here (i.e. people who are well and no symptoms don't post here much) and therefore the people who are the most ill are more likely to be resistant to standard treatments.
Posted 10/21/2008 2:39 PM (GMT 0)

I think you're right, glamourgirl. It could be the fact that we can't talk to just anyone about the disease or the fact medications aren't that great. Also, when we're flaring we can't just go out and forget about it--we end up at home (and therefore in front of our computer)!

glamourgirl, if you don't mind me asking, who did you see at the Cleveland Clinic?

Posted 10/21/2008 2:49 PM (GMT 0)
I think it's not just because of having a hard time talking to others about our disease, but with it being so different than other diseases and medications not working, we are trying to find some comfort and support other than family. Also I think our problem is not just the medication not working but the foods, sometimes the foods we know we can have isn't that good of a choice. It's a tricky disease. Sometimes it's hard to wrap your mind around cuz it's so different and weird.
Posted 10/21/2008 2:49 PM (GMT 0)
I know I'm a freak. If there's a weird manifestation on anything, I get it. Fortunately, I'm not allergic to any meds, they just haven't worked well for me until I started Remicade. My GI told me I was one of the most difficult proctosigmoiditis patients he'd ever had to get into remission, because nothing before Remi touched my symptoms. Even Pred only got me down to 15 bathroom trips a day.

But then, that's why we're here, isn't it? I describe my life as an ongoing medical adventure. Cracks my primary care doctor up every time I say it.
Posted 10/21/2008 3:58 PM (GMT 0)
I have been to 3 different doctors for my UC. The first one stop taking my insurance, the second one was an arrogant *ss who insinuated that I was exaggerating my symptoms, and the third one ( who I presently see) is beginning to get frustrated that none of the medications are working. He is still in the fight with me, but I, like you guys, am a tough case.
The people who struggle with this disease the most are the ones who are posting. I know there are people with UC out there who do respond to treatment. My aunt basically used the Rowasa enemas and reached remission.

go figure....
Posted 10/21/2008 4:57 PM (GMT 0)
I'm lucky with my new doctor because he also has ulcerative colitis (which was SOOO exciting for me because I always wanted a doctor who had been through it firsthand) so he knows that not everyone responds to medications, and when I tell him I don't feel like something is working, he agrees and we move to the next step. It's so nice to finally not have my doctor disregarding what I'm saying and actually trying to help.
Posted 10/21/2008 5:06 PM (GMT 0)
I was lucky that my first GI was a medical faculty/researcher, and the drug study with 5ASA saved my colon. It was being studied for Chrohns and he got a special protocol from FDA to let me try it.
My GI now (I moved) is OK and accomodating but certainly not very imaginative. I learned more that made sense (and worked) in an hour with the Naturopathic Doctor -- much of what has been confirmed here by folks -- than I learned in 20 years from the GIs.

It is such a relief to be able to talk and hopefully help, here. I hope my employer doesn't notice how often I check in! My husbands appears to get excited as me about small, weird victories, but he can't really understand.
Posted 10/21/2008 7:44 PM (GMT 0)
I think lots of people come here because no one really likes to engage in poop-talk and we can all do so here quite freely and openly. Plus everyone here understands and doesn't really just pay lip service. It really isn't a glamorous condition, is it? When do we get our telethon? I can just invision rows of toilets on risers as we answer the phones....
Posted 10/21/2008 10:51 PM (GMT 0)
Too funny~
Posted 10/22/2008 2:00 AM (GMT 0)
I saw Dr. Shen at Cleveland Clinic.

Sherry-LOL about the fish from Lake Erie!

Discouraged-I soooo know how you feel. Before UC, me and my DH went away to northern Michigan almost every weekend. My family has an awesome cottage on the lake. The problem is that there is only one bathroom that many people have to use. Even if it's just another couple there, it's still too hard for me to go since I know if someone else is in the bathroom, I'll have to use it. The stress of it all and the reality of the disease prevents me from going to the family cottage. We did get away this summer and stayed in a hotel. I'm comfortable enough with my DH that I told him to keep the bathroom door unlocked just in case. Luckily I never had to barge in on him..lol. Since you were talking about day trips, have you tried Immodium when you first wake up to see if that will prevent you from going all morning so you can get on the road? It really works for me and allows me to do things in the morning if I have to. It also helps with the anxiety, I use it kind of like insurance. I don't like to use it all the time, but I use it when I have to and it works!!
Posted 10/22/2008 2:35 AM (GMT 0)
I too noticed the numbers were so large for UC and CD.
Even though meds have worked for me, even though my flares are now mild, I have stored up years and years of longing to talk to others who really do understand. Since I am so old and was diagnosed in the dark ages, and spent most of my life feeling like I was the only human being on earth who had this "embarrassing, unglamorous" disease, this ability to talk with others has been a godsend.
My friends now are at an age where they are developing things like diabetes and diverticulosis etc, and they suddenly talk about living with chronic disease in front of me as if I don't understand. Because so many are embarrassed to talk about this disease, it seems to me, some do not think it is much of an issue. I never told people about having to make emergency stops on the way to or from work, or having to keep a change of clothes and extra underwear. I never wanted to talk about why I was so grumpy (quiet) when I was staying someplace where there was only one bathroom, or where someone had not bothered to buy extra toilet paper.

In the end, I am not sure anyone, even doctors, get what living with this disease can do to one's self esteem, one's life at work, at home, the way other people with the disease understand. We can laugh with, cry with, empathize with each other in an intimate way even without knowing each other in any way other than on line.

I think people with UC and CD do not get the same kind of daily support and empathy from the public that people with diabetes or heart disease get generally but here we do.

Anyway, that is my take.
Posted 10/22/2008 11:54 AM (GMT 0)
glamourgirl - I have tried Imodium before.  I find that it helps with the D, but while my movements are more formed, I still have urgency.  I just can't hold it.  I have had accidents in the car with my husband.  I feel bad for him because he panics and doesn't know what to do.  It seems like there is never a place to pull over when that feeling comes over me.  I wonder if taking Imodium the day before and into the next day would help.  I will try anything.  I also found that I don't feel so good for a day or two after taking Imodium.  Maybe it's just me??  Have you ever heard of Lomotil?  I have read of people with IBS taking it and calling it a miracle drug.  Wonder if us UCer's can take it occasionally for things like long trips. 

Posted 10/22/2008 12:29 PM (GMT 0)
Glamour - your comment about the cottage is like a page out of my own book! My in laws have a small house on the Tittabawassee river in Gladwin. Absolutely beautiful - but this small house only has ONE bathroom. When everyone is there - well lets just say that I've had to do my fair share of grabbing my gut in pain while waiting for that bathroom. Not fun. Since I've managed to get my Uc fairly under control, I have more control of my urgency so now it's not too bad. But I used to joke that I was going to put a portapotty outside just for me! I might still do that though seriously. Luckily, this house is near a lot of woods so I can create my own little haven in the trees :)

Jjc - I know what you are talking about. I have had Uc for a long time (not as long as you though) and I thought I was the only one in the world that had it. So when I found HW, I thought *Wow! A place where I can finally talk to others about this without them blinking twice!* This is such an ugly disease that it's not something you can bring up at the dinner table - though I have done that on occasion with the family! LOL So it was soothing to know that others could relate to me.
Posted 10/22/2008 1:50 PM (GMT 0)

Discouraged said...
glamourgirl - I have tried Imodium before. I find that it helps with the D, but while my movements are more formed, I still have urgency. I just can't hold it. I have had accidents in the car with my husband. I feel bad for him because he panics and doesn't know what to do. It seems like there is never a place to pull over when that feeling comes over me. I wonder if taking Imodium the day before and into the next day would help. I will try anything. I also found that I don't feel so good for a day or two after taking Imodium. Maybe it's just me?? Have you ever heard of Lomotil? I have read of people with IBS taking it and calling it a miracle drug. Wonder if us UCer's can take it occasionally for things like long trips.





I am the same! I will take Immodium if I really need to be somewhere and I know I won't be able to get to a bathroom. Thing is.. I always feel bad a couple days after I take it. I have to weigh out whether I want to feel good for ONE day as opposed to worrying bout a few days after. For airport trips..I don't care what I have to do I def take it cuz those security lines STRESS ME OUT.

I also believe taking immodium every day of my 7 day cruise on my honeymoon sent me into my first really bad flare...
Posted 10/22/2008 3:46 PM (GMT 0)
glamourgirl, I've seen Dr. Shen as well. I actually saw him to get a 2nd opinion when I went to see a colorectal surgeon. I didn't think he treated me like a freak. He recommended that I try Remicade for a bit longer before going to surgery.

Jjc--I know what you mean. It's so easy to say "I have diabetes" but no one wants to listen to what UC is. A lot of my former friends and acquaintances know that I've been sick a lot since last year, but I don't tell people what I have. If it was a more common and less disgusting disease like diabetes, I wouldn't mind telling them.
Posted 10/24/2008 3:23 AM (GMT 0)
Dr. Shen is my doctor as well. I didn't think he treated me like a freak. In fact, he even recommended the j-pouch surgery that I wanted. The meds didn't work for me and I didn't want to do the Remicade and Imuran routes at all.

As for not telling people about my condition, it was impossible for me to hide it, so I just told everyone. At my work, I deal with over 200 people in our office and over 150 people in the field/counties that we work with in NE Ohio. They all know that I had UC (about 2 months after being diagnosed) and what the j-pouch surgeries involve. It's hard to hide that I was in the restroom 20 times a day, stopped traveling, missed 40 days of work, and that when I had my surgeries, that I was off for 2 months at a time without getting fired....naturally I thought people would begin to notice that something was up. I've only been to work 5 months this year...and I'll be off another 3 months coming up.

I think the more that you let the other people around you know, the better it is for you, plus I didn't have to worry about hiding it. In fact, we just had a fundraiser for the Crohn's and Colitis foundation, so they all know what Crohn's and UC is now. Also, by telling people about my condition, I found out that 3 people in my department have spouses that have UC. And that another co-worker in a different department has a best friend that had UC and had the j-pouch surgery 10 years ago and is doing fine now. I got a lot of j-pouch surgery questions answered by him. And we have 3 people in other various departments living with Crohn's disease. So these things I would have never known if I kept my UC a "secret." I think now there is a greater understanding at our office on what we all with UC and Crohn's go through. So in return, I think that benefited everyone, including myself.

I just hope more and more people talk about it, rather than keep it quiet.
Posted 10/24/2008 1:36 PM (GMT 0)
GISGuy31, I agree about telling people about it. I work in child care, and I tell my co-workers, and my boss for cautious reasons. With child care you really can't run out of the classroom if you need to, so I talk about it as a heads up just in case I flare up unexpectedly, (which I haven't.) I'm just extra cautious. From talking about it I found out that my co-teacher had a boyfriend with Crohn's, and my boss had some experience with Crohn's in her circle too. So, it pays to talk about it. I've thought it to be a hush hush kind of thing, but it's a big part of my life, so talking about it helps me.
Posted 10/24/2008 4:51 PM (GMT 0)
ComedyDork-That's weird that Dr. Shen recommended Remicade for you. When I was his patient (3 years ago) he would not prescribe it. I never wanted it but he would talk to me about it at every appt. At the time, he would say "you don't die from UC so why would I prescribe a medication that could kill you?" He told me that he only had one patient who he prescribed it to because they begged him. Maybe his opinion has changed about it since that was 3 years ago.
Posted 10/24/2008 5:33 PM (GMT 0)
Well, I was already on Remicade through my other GI when I saw Dr. Shen. He said that he only likes to keep patients on Remicade for a year, and then try to wean them off on 5ASAs; if that doesn't work, then he'll suggest surgery. He also said many people have problems with pouchitis after surgery, so he recommended trying the above in order to keep my colon. So, it seems like he's okay with short-term Remicade use.

Wasn't Remicade approved for UC just 3 years ago? Maybe he felt like he hadn't seen enough trials or reports on Remi?

Posted 10/25/2008 12:06 PM (GMT 0)
I don't know when it was approved for UC, when I saw him it may have only been approved for Crohn's but people with UC were still trying it (like how Humira is now).
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