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Ulcerative Colitis
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Posted 10/1/2007 11:36 AM (GMT -8)

Hi everyone,

I am new to the forum--just joined today actually.  I have never spoken to anyone else who has UC, so it's amazing to see how many there are.  I have had IBD pretty much my whole life.  However, I have been bleeding consistenly for the past 3 years and was diagnosed with UC.  I have been through a ton of different meds (Rowasa, Lialda, etc) and nothing has helped.  It recently got worse and the bleeding won't stop.  I was put on prednisone for 1 month and it worsened yet again so I tapered off.  Right now my GI has me on 9 Colazal a day and steroid enemas.  I'm finding that the Colazal makes me extremely nauseus and tired.  Even now, I am still bleeding and have incredible amount of pain.  I'm frustrated because my GI keeps calling me "special" because nothing seems to help.  I don't want to be special...I recently got married and I have been nothing but miserable because of my condition.  It's hard for me to go anywhere or do anything--and at 24 (or any age for that matter), it's no way to live.  I cannot remember the last time I felt good.  I have a hard time getting answers from my Dr., like what the next step is if this doesn't work so I feel kind of in the dark.  Any words of advice, knowledge, anything?  What has it taken for some of you to improve and how long did it take?  I need help.

Posted 10/1/2007 11:51 AM (GMT -8)
Hi Emtk and welcome to HW. You have had a really bad time off it haven't you!!The first bit of advice i would give you is get a good doctor. If you don't have a doctor who is working with you and is totally working to get you better, you need a new doctor.Have you tried the 5-asa enemas? Have you been immuno suppressant drugs?What dosage of PRED WERE YOU ON?

Posted 10/1/2007 12:07 PM (GMT -8)
Hi fatboyslim.  Thank you for responding.  I have taken Imuran and tried Rowasa.  I was on 40mg of Pred.  Currently I am doing the hydrocortisone enema as well as the Colazal.  Unfortunately, this is my third GI....I have yet to find one who won't give up on me when things don't work--they keep referring me to other Dr's around Philly.  Have you ever tried the hydrocortisone enema or heard of any success people have had with it?  I am truly hoping this will be the one to work, but I'm not holding my breath.  Also, I'm wondering if it is normal to be this nauseus and vomiting on the Colazal--my body seems unable to adjust to it.
Posted 10/1/2007 12:14 PM (GMT -8)
EmTk2,

Welcome to HealingWell, so sorry for your suffering, I can't add to any suggestions just want to let you know we are all here for you.

Take care.

Dave
Posted 10/1/2007 12:26 PM (GMT -8)
i know i always have nausea and vomiting when i'm flaring bad anyway.I am on a hydrocortisone foam enema which does help me.You really need to get this under control.yOU MUST get a doctor who will get a plan of attack.It is not acceptable to be just left suffering.There are other treatments like Remicade which have helped many here who have tried every other treatment without luck.
Some here have found that thy have had food intolerances that have kept flares going for ages,and when they wliminated these foods they went into remission. A limited few have had success with Aloe Vera gel and some with changing their diets. None of these did work for me though as my flares all seem to be triggered by stress, and they do not get better until i become less stressed.
I'm glad you found us, feel free to ask as many questions as you need answered.
Marty
Posted 10/1/2007 12:30 PM (GMT -8)
welcome! i'm glad you are here!
Posted 10/1/2007 12:48 PM (GMT -8)
sorry to hear you are having such a tough time. I've been on 60mg of pred for 3 weeks and I don't think it's helping me either, also, don't know if the hydrocortisone enemas are helping me either, too.

I am working on finding a GI who can wrap their head around what's going on w/me. Don't give up!!! I feel beaten down right now but we've got to just keep on trying and pushing them and being my own advocate.

I was 24 when I was dx'd but had it pretty good for 7 years, I know what it's like to be young and married and deal w/all this. I'm also very active and the last two weeks have been such a pain to deal with.

Keep on trying and this place has been great for me. My Mom had UC (she now has an ostomy) my father's new wife has Chron's, my friend has Chron's and my friends Mother in-law has Chron's and my best friends father has UC. I had never really talked about it to any of them before. Poop or rather bloody/mucous/diareah is easier to talk about on-line I guess!
Posted 10/1/2007 1:07 PM (GMT -8)
I completely understand how you are feeling. I too have been bleeding for approx 8 months with all the other annoying symptoms of a flare. I got married about a month ago, so I understand your frustration with that as well. Thank goodness I have a very loving husband....I just hope something will soon work for me so that I can get back to my old self. I am really tired of feeling sick all the time. I have been through a lot of the meds....nothing is working for me right now. I've done the enemas, the suppositories, the 5-asa drugs and even the god awful steriods do not put me into remission. I am currently doing the remicade tx with Imuran. So far no relief with two infusions under my belt. My next step is to go see a naturalopathic doc b/c I am really running out of options. I hope things start looking up for you. Definitely get a new doc though. I was told I was a "special" case as well.

Natalie

Posted 10/1/2007 1:09 PM (GMT -8)
Hi and welcome

I was surprised when I joined that there were so many sufferers as well.  It sounds like you have been having a rough time, I can relate.  I know what you mean when you are frustrated with your doctor.  I am experiencing that very same thing today in fact!  I am not sure when the last time was that i felt good either.  The only thing I tell myself is it could be worse.  I try to think positive and recently started doing yoga to ease my anxiety.  I am currently on 12 asacol and canasa enemas for the constant bleeding and urgency.  Have you tried those yet?  They do seem to work, unfortunately when I went off them last time the flare up came back.  I am going to use them longer this time. 

I wish I had some more advice to offer you but I am new to having UC and are with you in frustration!

Would love to chat sometime,

Take care and think positive

Amy

Posted 10/1/2007 5:22 PM (GMT -8)

I honestly did not expect such a huge response.  I wish I had done this 3 years ago because I felt completely alone not knowing anyone esle who goes through this.  I truly appreciate all the support and advice. 

Amy, you had mentioned yoga.  Do any of you feel as though exercise helps ease some of the symptoms?  I have been told to exercise and it will help--just one problem...I am exhausted from bleeding, anemia, and the meds I am on.  Maybe something like yoga will be easier than trying to go for a run.  Also, I have tried Canasa enemas (which did not work), but I haven't taken asacol before.  Beth, you had also mentioned being active, so I'm interested to see how exersice can affect things.  

And Natalie...what exactly is a naturalopathic doctor?  Wow, I have so many questions and actual people to ask!!! 

Posted 10/1/2007 7:02 PM (GMT -8)

Hi from another new member!  I was really glad to find this forum, too...it is always comforting to know that you are not alone.

I have had UC for over 11 years now, and for the past 5 or so I have been successful controlling my flares with hydrocortisone enemas and Colazal.  I have UC throughout my colon, but most of my recent flares have been isolated to the end of my colon - where the enemas can reach.  As I understand it, if your flare is too far up into your colon, the enemas will not be able to get up far enough to work.  Do you know where your inflammation is worst?

Unfortunately, I am now in the middle of a major flare that is not responding to enemas, so I am back on Pred and they are looking at Remicade as another option. Still, I did have great success with the other treatments for several years -- and an enema beats an oral steroid any day in my book.

I agree with the others, however, you need to find a doctor who will work to get you better and not just pass you off. 

As far as exercise, I am in too much pain and too tired when I am flaring badly.  When it goes down and during remission, however, I am really active - cardio, abs, weights, you name it.  I think it does a lot to keep me healthy and a little less stressed.  I am about to try accupuncture and think yoga could be perfect for the stress, as well.

Good luck!

Kris2336

Posted 10/2/2007 3:30 AM (GMT -8)
hi Emtk2

Greetings from another sleepless night, yet another all nighter in the bathroom.  I am just pooped!!  No pun intended!  LOL

I do yoga only when I can. Yes there are days when I am too uncomfortable and in too much pain to do it.  When I do yoga it just relaxes me.  I am not sure it eases the symptoms of UC but I have such bad anxiety due to this that yoga eases it. 

As far as doctors go, I do like mine, but fear he is too conservative with me.  I just tell myself since he doesnt have this problem he really doesnt know what I am going through.  He only knows what he has learned this far.  Thats why this site is so helpful to me.

I hope joining this forum has helped you, it has me.  I cant believe how many people have the same problems I do.  It makes me feel a little more normal!  If that is possible.  LOL  I hope you feel better soon!  I am off work again today, I will be around to chat. 

Take care

Amy scool

Posted 10/2/2007 10:13 AM (GMT -8)
Hello - and welcome to Healingwell! It's nice to see new members. Well, not so nice that you have UC... But nice that you found us! This is a great forum - I have learned a TON about UC which I thought I knew a fair amount about... Guess I was wrong!

A good doctor is key! You really need to have a good "team" of people. A good PCP, a good GI, and a good support system. Knowledge is power - so learn all you can! Finding this team can take a while. I know, it's hard to find the right docs (I'm about to start the hunt again after moving) and sometimes it takes a few - or more - tries.

Best of luck - and let us know what questions you have!
Posted 10/2/2007 2:22 PM (GMT -8)
To answer your question about a nauturalopathic/homeopathic doc....Their practice/focus is on natural remedies. We all know that our disease is a mixture of environment and genetics and each individual gets the disease for different reasons. I am a holistic person and believe in the strength of natural remedies, as well as the need for true medicine. I am just running out of ideas to help in my case b/c nothing is working for me. I would love just to hear a different opinion and try a different route since medicine isnt helping. I wish you the best of luck in your search for the best tx for you personally.
Posted 10/2/2007 5:26 PM (GMT -8)
Have you tried experimenting with your diet? It helps some people if they avoid certain foods or go on a no carb diet.
Posted 10/2/2007 7:06 PM (GMT -8)
Hi EmTK2

Welcome. Glad you found this place. Glad I found it. I have lived with UC for 46 years having been diagnosed with it at age 15 back in the dark ages. I spent a month in the hospital, missed an entire quarter of school and for most of my life I did not know one person who had this awful disease. I was 60 years old when I found this site.
I remember how lonely and embarrassed and frustrated I was, especially in my 20s. It seems to me my version of UC was at its worse from age 15 to age 30. Maybe the meds got better, maybe I learned about my own body and listened to it better. But still, it has been a long journey.

And because I always felt so embarrassed by it, I never had a support group. Funny, when I had open heart surgery in 2005 I had amazing support. It was ironic. UC has been a zillion times harder than heart surgery and yet the real support only came when they cracked open my chest. I recovered nicely. People do not understand chronic disease unless it is something that has visible issues. I guess if we all had to give ourselves shots instead of have to always know where bathrooms are, we might get more understanding.

But here it is different. We get it. The down times. The up times. The anger and even sometimes the humor about it. Here we can say things like "wet farts" and know others won't get upset and know what we are talking about.

Hang in there. Keep working to find a better GI, for meds that work and for a long remission.
Posted 10/3/2007 6:12 AM (GMT -8)
My advice: keep looking for a gastro that will listen to you and work with you. There are several excellent docs in the NYC area. I'm making plans to travel there to see Dr. Ronald Hoffman after working my way through seven different gastros here where I live.

Educate yourself on dietary modifications and natural supplements you can try that will support your healing process. If you haven't tried these things yet, they can make a huge difference in helping you get your condition under control. Listen to Your Gut by Jini Patel Thompson is a great place to start. Other books you might find helpful are Breaking the Vicious Cycle, The IBD Remission Diet, The New Eating Right for a Bad Gut and Optimal Digestion.

Hang in there... it does get better, but healing takes time and commitment. It took me a couple of years to figure out what combination of things worked for me and to start feeling consistently better.
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