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Ulcerative Colitis
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Posted 3/15/2009 10:52 PM (GMT 0)
I thought it about time to actually join in. You guys have really helped me get through the last 9 months. You have all taught me so much. In the begining, in the worst of my flare, some of the stuff I was learning scared me but some times you made me laugh till  cried.Like the thread about how fast food had gone from entrance to exit. You guys are so funny! Sometimes it has all been a bit overwhelming but I learned I just had to take things a day(or week)at a time and try each thing one at a time till I found what worked for me.

A little about my journey: I was dx July '08 with mostly leftsided UC. Dr. said there is one spot way down on the right side. The pictures from my colonoscopy just about scared me to death! There were several places where my colon was almost swelled shut.He put me on Asacol and it just about killed me before I realized it was the meds. making me even sicker. By the time I realized what was happening I had 13 of the side effects. I decided then I wanted to try to go the natural route as much as possible and although my Doc wanted to put me on Remicade,6-MP and steroids, I was very stubborn and he was willing to give me a chance to try it my way. I told him I didn't get this way from lack of drugs in my system and I wanted to figure out how to get  things balanced back like they were supposed to be. Said he had other patients who had not been able to tolerate the meds. At the worst of my flare I was off work almost 2 months. On the john 20+ times a day, lost 40 lbs(one good symptom :-) )and for about 2 weeks my ankles were so swollen and sore I had to use 2 canes to get out of bed in the morning. Thank God for Vicoden!! Being a hairdresser I knew I had to have the frequency and urgency and the pain in my legs and ankles under control befor I could even think about going back to work. So I actually feel, compared to the things some of you have had to endure, 2 months wasn't too bad.

I'm down to fairly normal bm's(usually 2 or 3 trips to finish) in the morning then do pretty good till about 2 after I eat lunch. Never fails! Got to go!! Then pretty good till I get home and eat. Down to small amount of blood that just wont seem to go away and still some mucus. I'll be so glad to finally achieve remission but am pretty happy with where things stand now and getting better every day. (Unless I go crazy eating things I shouldn't).

So thank you all for being here for me. Now I hope I can return the favor.

Edy 

 

Posted 3/15/2009 11:33 PM (GMT 0)
Welcome to HealingWell, Edy.
Posted 3/15/2009 11:36 PM (GMT 0)
Welcome Edy.  What did you do in order to achieve remission?

Posted 3/15/2009 11:41 PM (GMT 0)

Welcome and glad you are doing so well.  We would like to know more about your treatment.

I, too, found all mesalamine medications making me very sick - not UC sick - flu-like sick.  I am on the prednisone and 6MP and doing well.  Seeing my gastro doctor tomorrow.  Not sure what is next.

ElaineNY

Posted 3/15/2009 11:43 PM (GMT 0)
     Hi Edy, what meds are you on?

Posted 3/16/2009 2:58 AM (GMT 0)
Well, I just spent 30 min. answering each one of your questions. Had computer trouble. Lost everything I had writen so now I'll start over. This could take a while 'cause I'm not very fast at typing.......

Hi to all of you.
Mamas Boys, I won't really concider myself in remission till there is no more blood and mucus and I'm not having more than 2 BMs a day

Elaine, After the Asacol craziness, I really went sort of overboard with the suppliments and eventually narrowed it down to aloeMPS,probiotics,enzymes, C and E, Curcumin, and grape seed extract and selenium for anti-oxidents. I can't say any of them have worked miracles but over the long haul I guess they've helped. It's a constant fine tuning process. I just decided to try upping my probiotics to see if I could tell a difference and at this point it seems to have just given me more gas. Which is the one thing that causes me to still feel the urgency (unless things are really moving through) but from what I've read, that could mean that the good guys are just kicking the bad guys out. So we'll see. I have had problems with yeast so I hope this will work. I have now been on the spinach/sunflower seed diet for about 2 months(I'm so sick of spinach)No miracle here either but something is working so I'll stay with that ,too. I've been trying to eleminate what ever I can that causes me gas especially at work but limiting food is very difficult for me because food has long been my drug of choice. Especially sugar which is the worst thing you can eat and I know it. It just kills your immune system and just feeds the yeast. It's just constant trial and error!

Christine, I'm not on any oral meds except my suppliments. I have gone on steroids twice when the bleeding was out of control. Last time was after the holidays. Got WAY of the diet.I'm fortunate that I don't have bad side effects from thosebut the highest I've gone is 50mg for 3 days the a rather quick taper. And I seem to hold what ever progress the give me. I may even ask him about going on another round just to see if it will take me on into remission. I see him in about 2 weeks. He also wanted me to try 6-MP which I was terrified of and I told him I would not tolerate 3 side effects. Fatigue, can't work if I'm fatigued. Mouth ulcers, been there done that on the asacol. Had 8 at one time Talk about HURT!! And hair loss, who wants a bald hairdresser? My hair started falling out by the handfulls before a month was out. I told him if the side effects are worse than the symptoms then it's not quite worth it!! I did try the Rowasa enemas but it wasn't long before it started getting in my bloodstream and I started getting mouth ulcers again. So much for those. I do use steroid suppositories at times also.

So that's about where things stand for now. My goal is to be in remission by summer.I hope I can make it.
Edy
Posted 3/16/2009 3:23 AM (GMT 0)
Christine and Mamas Boys, I'm so glad to know you're in remission. I pray it stays that way.
Posted 3/16/2009 3:25 AM (GMT 0)
Shoot hit the wrong button!I'll get the hang of this pretty soon.
Elaine, It won't be long before we'll be able to say the same.
Posted 3/16/2009 3:30 AM (GMT 0)
Welcome Edy. You sound just like me when it comes to meds. I tried 3 different 5 ASA's and they all made me much worse. Then my GI wanted to go to the next level of drugs, starting w/6mp which I'm terrified of. I'm trying the natural route myself w/supplements. Tho I'm limited to what I can take since I am nursing right now. I'm so happy to hear that you have made such a big improvement w/o Rx drugs. Good for you! :-)
Posted 3/16/2009 3:36 AM (GMT 0)
Hey Southernbelle. I see that you are on Threelac as well. How's it going for you?

I stopped crapping out yeasty stuff and I'm almost there. Did you experience the same thing?
Posted 3/16/2009 3:46 AM (GMT 0)
Edy.... I to am on some of the similar " non prescription drugs... as well as still on lialda..... and still taperin off the predd.... But am getting closer to being off that D drug. I am almost to 100 days on the spinach/sunseed diet. And I attribute most of my success to that. was on doc's drugs forever to no success. Started noticing a improvement after just a few days of the diet. but that is not what made me post here tonight.

I noticed you were on aloe pills also. I started on those in the beginning. have been on those till about a month and a half ago. I ran out. and forgot to get them.. have stayed off them for a month and a half and haven't noticed a change for better or worse. am thinkng they were doing nothing for me. I know each of us are different... but believe they were not helping me in the least. I also believe they were not hurting anything. and my be helping some. but quesion them.

I fel the probiotics... and the diet... and yes I can't rule out the med change to Lialda ( yet) have helped the most. As soon as I have tapered off the pred... (down from 60 - to 7.5 ) I am planning to start tapering the liadla. Trying to get off all meds.

This was just a thought for you when i saw you were on aloe also. And sorry... I couldn't come up with a humoress Bit for this post. Just nothing funny here. But I try when I can. LOL
Posted 3/16/2009 1:07 PM (GMT 0)

I can understand everyone who is terrified of 6MP and side effects.  I was scared too but more scared of the word "surgery" - probably because I am 68 and need knee surgery bad.  I have takne the 6MP for 16 days - no bad side effects like the mesalamines, thank goodness.  Of course, I understand it does not really kick in for a while so still on prednisone.  Seeing doctor this afternoon.  Best part is the symptoms of UC are slight - tiny blood some days, formed BM's - maybe only 2 in morning - much less nausea and my arthritis feels wonderful, skin is great, etc.  Moonface from prednisone is not fun but ok for now.  I have not lost any hair but too soon for that.  My husband lost hair all over from chemo - it came back (more on one leg than other lol) and who cares - he is in remission from lung cancer.

By the way, spinach gives me LOTS of gas - my IBS!!  Can't eat sees or nuts because of diverticula.

ElaineNY

Posted 3/16/2009 1:31 PM (GMT 0)
Hi AMK77...As for the 6-MP..I feel anything that suppresses our immune system, unless nothing else is working, is just scarry!! I've been reading a book "The Immune System Cure" and it really makes a lot of sence since what we're dealing with is an auto-immune disease. One thing they are big on is plant sterols which helps to modulate the immune system Plus they talk about other suppliments and diet(NO SUGAR!)that help to get the immune system back in order so the body can heal itself. The sterols is actually one of the things I started with but dropped just trying to simplify things. I think I'm going to order some more today to try again to see if they make any difference. If you are really flaring do what ever it takes to get you healthy so you can take the best care of yourself and precious little one. If you have the time, you might want to research the sterols to see what you think.Congratulations on your new baby. I hope you are both doing well.

James...Unfortunately I haven't been able to give the Threelac or any other yeast treatment my full attention because of the unpleasent side effects if you go full into it. With working on clients all day I try to not eat anything that is going to cause more problems because I really hate to have to excuse myself with somebody in my chair. So I just go all out on the weekends and I'm not sure how much good that really does. Next time I take a few more days off I think I might go at it with a little more diligence to see what happens. I'm very happy for you that you were able to get such good results with the things you have tried.

Unclebubba....I have been watching your progress for a while and am so glad to see you doing so much better. When you first joined, I remember you were really struggling. You touched a place in my heart right off because of your name. My cousins called my Dad Unka' Bubba when he was living so you kind of stood out to me.
As for the aloe. I'm just about out so I decided to try leaving it off to see if it was actually worth taking because what I'm taking is VERY expensive. I left it off for about 10 days and started back this morning to see if there is any change. I'm almost hoping there's not much change so that will be one less expence. I so happy to see you almost off the meds. I hope your symptoms hold fast as you come off the pred. So many seem to relapse as they try to come off it.

Hope everyone has a blessed day.
Edy
Posted 3/16/2009 1:41 PM (GMT 0)
Elaine.. I'm so glad to hear your husband is in remission. The stress of that couldn't have been very friendly to your system. I really hope the 6-MP works well for you. I'm really trying to eliminate anything that I find that gives me gas. When that stuff drops down into my inflammed rectum and I'm working on a client there's no way to hide it. The look of terror that involentarily comes on my face till it settles down has got to be almost funny!!Not fun!!
Posted 3/16/2009 2:10 PM (GMT 0)

southernbelle - yes, that is when my worst flare started - stress from my husband's illness.  Taking Xanax has helped calm a lot of stuff down.

GAS - one of my worst enemies and pain maker!!  Sugar (my problem) is a culprit and I take Gas-X (recommended by my doc) and Beano when I know I will eat something that might "offend".  Helps!

As someone said - if we could only find something that WORKS like prednisone without all the side and after effects!  I am 68 with very strong bones so hoping in my lifetime not to have too many problems. 

ElaineNY

Posted 3/16/2009 2:37 PM (GMT 0)
I actually feel my UC started when I was stressing over trying to get my house sold. My sister and I have moved in with my mom to care for her. She has dementia. The yard here is 1 1/2 acres and an acre at my house an hour away. Dealing with 2 1/2 acres and selling a house in this market (plus all the sugar I was eating ) the old body just threw in the towel and shut down on me!. Thank God my house sold the end of Aug. so at lease some of the stress was removed. Mom is actually doing fairly well under the circumstances. A very slow digression.

I also learned from you guys to keep Gas-x on hand. It does seem to help. I do have some thining of the bones starting so I'm very glad I haven't had to be on the pred very often.
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