New to the Forum and need some encouragement

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?

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.

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

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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

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keep the faith

Pred40mgs/asacol/proctifoam/omoparazole 40mgs/Domperidone10mgs x 3 daily




http://www.myspace.com/martybuzz1<FONT]

welcome! i'm glad you are here!

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katie
23
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery
gastritis

VSL #3
Amitriptyline to slow gastric emptying
Forvia
compazine

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!

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Beth, 31

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.

Hi and welcome

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!!! 

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

hi Emtk2

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!

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Pan-colitis and GERD diagnosed May 2003

 

Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed

Aciphex, Effexor XR, BCP, Rhinocort nasal spray

Culturelle, Biotin, Folic Acid, Forvia, Calcium, and B12

 

Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.

 

Co-Mod for the UC forum

Keep HealingWell running smoothly:  www.healingwell.com/donate

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.

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Diagnosed with UC Feb 06

Have you tried experimenting with your diet? It helps some people if they avoid certain foods or go on a no carb diet.

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Proctitis - diagnosed April 2007 (symptoms starting in October 2006)

Flares treated with Rowasa enemas

Mild food diet (chicken, rice, collard greens, no sugar, no corn, no beef/pork, etc)

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.

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diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm

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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Diagnosed with ulcerative colitis spring 1999