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Ulcerative Colitis
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Posted 9/17/2008 2:21 AM (GMT 0)

I have never done anything like this before. I've had ulcerative colitis for about 11 years (diagnosed at 16), and I have always shunned the whole support thing because I didn't want to be a sick person.Well, this not wanting to be a sick person has gotten me into trouble on a couple of occasions now; in the form of not taking my meds because I felt great, or just fogetting to take them because I felt great, and thinking that I would be fine forever. Well, I'm certainly paying for that now. I feel really alone...not in the sense that I'm lacking support from my boyfriend/family/friends (they are awesome), but more that I sometimes feel like I'm the only 20-something woman suffering from this; like I am the only friggen person on the bus on the way to university who is sersiously worried about having to have the bus driver pull over on the highway because I'm going to "throw up"(lie lie lie)! How many times have I been in my Specialist's office surrounded by senior citizens (no offense to senior citizens)? ARRGHGHGH! I make light of it as much as I can, but it still makes me want to feel sorry for myself sometimes...nothing makes you feel more isolated than when you feel you somehow don't measure up to the normalcy factor of the general population. A lot of this stuff is embarrassing you know...obviously. Especially when you're dealing with something that you almost NEVER hear about and that people never talk about...most people I know had never even heard of it before me, and definitely had no idea how serious it is, or how it can disable your normal functioning and affect your self-esteem. I guess I would like to talk to, or get advice from, someone close in age to me who is going through this well...crap. Pun intended.

Ok, so I'm flared right now. I DO NOT want to go on prednisone again. I absolutely hate the side effects, hate how it makes me feel and hate how long the side-effects stick around after going off of them...I heard about this other new (enema administered) steroid drug that doesn't absord into the body, therefore eliminating side-effects, but I cannot remember the name...does anyone know? Also, I am currently on Imuran and Asacol. The things I have heard (as far as possible side-effects) of Imuran really scare me. In the next year to 2 years I will definitely be trying to get pregnant...but I hear so many different things about Imuran and pregnancy it makes my head spin! I will obviously go to my doctor to find out more, but I was hoping to get some insight from people who are actually dealing with this in their own lives. Sorry for the uber long post, but it was my first time...next time it won't be such a rant!

Asacol

Imuran

Posted 9/17/2008 2:56 AM (GMT 0)
It is so hard to deal with a chronic disease like this at such a young age. I was diagnosed 6 years ago and I just now turned 30. I was on steriods non-stop for 4 years (along with trying ALL of the other medications that failed time and time again) and last year I made the decision to have j-pouch surgery and it is the best decision I ever made. I have my whole life ahead of me and now I can live it med free. I could not have raised a child as sick as I was so in my eyes if I ever wanted children I needed to take care of myself first. Now that I am through my surgeries that is the option that I have and I still have plenty of time to have them. You are not alone. There are plenty of other young women suffering from this awful disease while our friends live happily and steriod-free (moon face and all) I felt like I was too young to have accidents all of the time and it just wasn't fair. My mind was constantly worrying about having accidents and it got to the point that I was scared to get in the car or go anywhere that I was unfamiliar with the bathroom situations. Hang in there, you aren't the only one out there!
Posted 9/17/2008 4:22 AM (GMT 0)
Thank you so much! I guess sometimes I should be thankful that I have only had months long - not years - long bouts of steroids; and I should be glad that I do seem to respond well to them, and then to other meds while I'm taking them regularly. But it is so scary to me that things could get worse...and I know that that totally goes against what you're supposed to think about when you have an illness that is so responsive to stress. Could you tell me a bit more about the surgery? I have always seen any surgery as an absolute last resort. My mom had a colostomy at 23 due to the fact that at the time there wasn't the greatest drugs, she got pregnant with my brother while very sick and took no meds during the pregnancy. She just was not able to bounce back after he was born, and it was basically surgery or death. This is not a route she wants for me, nor do I want it for myself. She has been through a lot, and experienced problems related to the surgery. I don't know a lot about your surgery though and would be interested in knowing more. As far as there being a lot of younger women and men dealing with this, I guess I do know that they are out there somewhere, I just have never had the pleasure of knowing or talking to any of them! I pretty much rely on my mom because she's the one person who completely gets it - because she's been there. Sometimes I can't believe how little I know about this disease or the different medications out there...even about my own diagnosis. I still do not know what type I have: Proctitis? Left-sided? I'm pretty sure it's not pancolitis...I think it's left-sided. I have been hospitalized once for 5 days, and was put on IV steroids and responded rather well, although it took some time for me to fully recover. I know these are things I should have discussed with my doctor years ago, but you know, I always seem to forget all my questions when I'm sitting there in the bustling office, knowing how busy the doctor is and how many people are waiting. But, I have now made a list which I intend to take to my next appointment! Thanks so much for responding, look forward to hearing from you again!

Posted 9/17/2008 11:05 AM (GMT 0)
Hi, welcome to HW! :) The enema you are referring to is Colocort. This is a great med but you still do get some steroid into your system - only about 5-8mgs. If taken long term, you can still get the side effects like an oral steroid. But short term courses shouldn't be that bad.

Your story is so similiar to mine and what I went thru when I was younger. I was in major denial too and just wished, hoped and prayed to be just a normal person. It wasn't until I got older that I was finally able to accept this horrible condition. Well let me tell you - you are NOT alone now. You have found a great community in which people can totally relate to you and what you are going thru.
Posted 9/17/2008 3:01 PM (GMT 0)
Hi Dee,

I was dx'd at 24 and your story is similar to mine too, my Mom has an ostomy and i'm on imuran and may be on that while pg. There are some great threads here that discuss the whole drugs and pg situation.

This forum is great, unless people have gone through what we have they really cannot give us the empathy we need.

Hope your flare gets better real quick.

Take care,
Posted 9/17/2008 5:37 PM (GMT 0)

Hi Dee,

I was diagnosed with ulcerative colitis on my 18th birthday (I am now 26) and like you, I still don't know which type I have. I am sure my doctor discussed is with me when I was first diagnosed but I didn't really hear anything he said besides the fact that I will have this forever (unless I choose surgery) and that I will have to take medicine every day for the rest of my life for my body to live with this. It was pretty scary and I automatically went into a state of denial. Luckily, I have only experienced 2 bad flares and I have a wonderful doctor that works well with me.

I went into an extremely bad flare last year right before my wedding and did not want to go on prednisone because I didn't want to have "round face" and the shakes and gain all the weight that comes with prednisone (vein, I know) so my doctor put me on Entocort which is another steroid but the side effects are so minimal compared to prednisone. At least with me Entorcort worked wonders, but I have also seen people's responses about it on here to not be very good for them. I think with just about every med, it is trial and error for each person.

My husband and I are trying to get pregnant right now and luckily my doctor said that the meds I am on now will not be a problem. You should definitely sit down and discuss everything with your UC doctor and also with your OB before trying to get pregnant.

I had never met anyone with UC either, until I started coming to this forum for support. HealingWell has been a wonderful source of information and support for me. Hopefully you will be better soon and good luck!!

Posted 9/17/2008 5:53 PM (GMT 0)
Beth, our situations are so similar! Wow! This is so comforting...terrible that all of you are suffering with this, but still, comforting to know I'm not alone. I'm hoping to get into my Specialist soon. I don't want this flare to get super bad. I'm not in pain right now, as far as cramping, but I had to get up 5 times in the middle of the night last night to go to the bathroom, and I'm missing class this morning...so it's definitely bad enought to warrant a visit to my doctor. Sherry, thank you so much for putting a name to Colocort for me! I really need to get some control here, and I tricked myself into thinking I had it before because I was only going to do what I wanted to do...but how can you have control of a something you know so little about? I guess in our situation education is key! I am so glad I decided to join HealingWell!

Dee
Posted 9/17/2008 8:37 PM (GMT 0)
Dee try using a heating pad at night, it really helped keep my colon calmer while waiting for meds to kick in.
Posted 9/17/2008 9:05 PM (GMT 0)
Hi

I know what its like to feel like the only young person going through something like this.

My whole problems started actually with a hip problem. Im 21 and I've already been diagnosed with Arthritic, Alkalizing spondalytis and NOW I just found out I probably have Ulcerative Colitis. I'm both panicked and calm... panicked cause I've been reading up on it and it seems like yet another flare up to deal with, but calm because I finally have an answer to whats wrong with me.

If you ever want to talk to someone close to your own age about the problems faced by young people with diseases more commonly ascosciated with older generations I'd be glad to talk. You are not alone lol.

Also, if anyone would like to tell me some good ways to moderate the abdominal pain I would be very grateful.
Posted 9/17/2008 9:11 PM (GMT 0)
I know how you feel. I've been dealing w/UC since I was 23, I'm 31 now. I thought the same things you did, I would look at other ppl and think how lucky they are not have what I have. The truth is, everyone has "something" going on in their life.

I'm sorry to hear your mom had to get a colostomy so young after her pregnancy. I think it is due to my pregnancy that I am in remission (yay!). I cannot tolerate anything w/mesalamine. And I didn't want to be on anything that suppresses the immune system.

Welcome to the group - you're definitely not alone! wink
Posted 9/17/2008 10:08 PM (GMT 0)

I just wanted to chime in here and tell all you very young people how much I admire you.  Facing a chronic disease at any age is difficult.  I am 68 and newly diagnosed and find very few in my age group with UC newly diagnosed.

I am very fortunate and yet some days I feel sorry for myself that I have to deal with this so late in life!  I do have IBS, arthritis, hiatel hernia, GERD, extreme dry skin, obesity and two very bad knees that need replacing. 

All I can say is "one day at a time".  I am going to try Lialda starting Friday and crossing my fingers that it will help me along with the Rowasa.  If not, I also do not want to go on steroids or the immune suppressants so may try deal with it as I did for a few months with Imodium and pepto bismal, Tylenol and hoping for best.

ElaineNY

Posted 9/18/2008 3:12 PM (GMT 0)
Hi, I was in my 20s and in law school when I developed UC, in 1985 or so. I think it was caused by Accutane. It took me a while to figure out how to manage things, what to do and not to do. But here I am more than 20 years later, coping pretty well ~
I had never "met" anyone with this disease until I checked out this forum. It is surreal to hear people experience exactly what I have. Sometimes I read posts to my husband in amazement, and sometimes it makes me cry! I thought I was the only one who dreamed about finding a bathroom!
I choose not to tell people I have this, only my family knows and one or two old friends from "back home." My friends just think I have a small bladder, because when out shopping or playing golf I have to use the bathroom a lot (and I'm very good at sneaking off to go real quick). They don't need to know the details.

My situation: Since I did the food sensitivity testing and stopped eating everything I tested sensitive to, (I tested highly intolerant to gluten, for example), I think I can say, for the first time in years, I am in total remission! No blood at all, which is absolutely amazing. Who knows when I developed the gluten problem, I know I still have this disease, but it helped me.

I know prednisone sucks, but I still turn to it because it works. I also find the Rowasa helps some, but it disrupts my sleep so much that I avoid it unless I'm really suffering. I've been on asacol since before it was approved, but I've not tried a lot of the newer meds people mention here, my doctor has said they are not worth the risks for me, but we haven't talked in a while so I don't know what she is doing with patients these days (after all this time, she pretty much calls in my asacol, prednisone and rowasa whenever I ask for it).

When I am going so often it disrupts my day or my sleep, I take one-half an immodium, not enough to block me up but enough to calm things down. More will make you feel worse because you will want to go but can't. Ask you doctor about that!

Feel good, I hope it helps to know you are not alone!
Posted 9/18/2008 8:40 PM (GMT 0)
I have never felt that I'm only one who has this disease because my brother has it also, but I still have to be in my home while all my friends are having fun, drinking and partying and that really sucks. I also hate side effects of prednison si even I'm now in flare up I want to try it without it. I hope there will be some real cure soon.
Posted 9/19/2008 3:27 AM (GMT 0)
Dee - Sounds like you have a lot of support on this forum. It is comforting to see others that are going through the same things that we have with this disease. You asked about my surgery. A good website for information on that is www.j-pouch.org. It is a big decision, but some of us unfortunately did not have anymore options. It is a good surgery option, especially if you would like to have kids one day. Hang in there!
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