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Posted 8/13/2009 4:40 AM (GMT 0)
Hello everyone...

Im a 22 y.o. Male who was surfing google finding informative stuff about my disease and ended up here.... it been 6 hours since ive been on this website and boy o boy do i feel bad for some of you and sooooooo scared and shaking (crying) for myself.

I was diagnosed with proctitis 5 years ago. My symptoms are some months with just 3-4 BM a day and sometimes like right now 9-10.... but they r quickies and i just need to go empty myself bc of pressure and come out. (is this how it is for everyone)

I started on Canasa first time i had flares went into remission and thought i got healed so i stopped. after 2 months it came back mad and went to doc who wanted to kill me saying why did i stop the canasa. This time he put me on Canasa and Asacol full dose (12 tabs) and things started to get better and this time and tapper off very slowly and cabum....! it all came back again. Yes by now i started to understand wt MAINTENACE dose means. and just to make the story short i have till now tried CANASA, ASACOL, LIALDA, COLOZAL all at full doses... they gave me some hydrocortisone and Rowasa enemas but i just CANT hold them in.

I havent seen my doc for the past 6 months bc i was in remission and since then i was using 1 canasa a day and 6 colazals and my sysmptoms were fine. Till the beg. of this week i started flares and its like 10-12 times a day and sometimes im waking in college campus and it just comes and messes up my pants and underwear all i can do is to go to bathroom and just CRY and CRY and CRY. My doc said to me 6 months ago that ur next option is cortisone suppos and hydrocortisone by mouth if u fail dose (and since u failed the rest of the meds) we need to put u on a hardcore medication by the name of Remicade which i see alot of ppl in this forum r on. But he said i dont like that drug bc its will make u suseptible to chronic infection and cancer (G-d forbid).

I DONT KNOW BUT IM VERY SCARED AND DEPRESSED. SOMETIMES I JUST WANA GIVE UP.

ONE QUESTION: PPL ON REMICADE DO U GUYS REALLY HAVE A NORMAL LIFE? WILL IT REALLY BE ONE DAY THAT I HAVE FORMED STOOLS NOT WORRYING TO HAVE TO RUN TO BATHROOM AND GET MY UNDERWARE AND PANTS DIRTY BEFORE I GET TO THE STOOL IF I GO ON REMICADE...

Please guys anything u guys say and tips i would apprEciate... my doc is a great one from UCLA but i feel lots of u know more than him. I PROMISE that the more tips and helps i get here i will payback by sharin with you guys what i learn as well and pray for all of us for a LIFETIME TREATMENT OF THIS DARN THING!!

Thank u for reading my post...!

Posted 8/13/2009 4:54 AM (GMT 0)
Welcome to the forum.  We have all been where you have been.  Hang in there, keep posting.  We're all in this together. 
Posted 8/13/2009 5:16 AM (GMT 0)
First off, Welcome to Healingwell. I'm really glad you've found us. We all have been in your position and are willing to help!
So you have tried asacol, canasa, lialda and colazal, and some enemas? Is that right? I'd make an appointment with your GI asap if you're feeling you're flaring again. Usually the quicker you catch it, the better. Have you tried prednisone? I think usually GI's try that to get patients into remission quick and they place them on a maintenance med (it's been a while since I've flared so I don't remember exactly).
I was a lot you while flaring. I tried every name in the book until eventually remicade was my next choice. It is a heavy potentially harmful medication but you have the way the pros and cons. I wasn't getting better with anything and remicade was our only hope at the time so we decided to try it (I was 16 at the time too...). It didn't work for me but there are plenty of people on here who have found remicade to be very beneficial.
Hang in there. I know it's tough but we are here for you! :)
Posted 8/13/2009 11:12 AM (GMT 0)
Mike, hang in and things will improve. The rectal meds are vital for someone in your situation, use them and hold them as long as you can. If the docs say prednisone, take it and handle the side effects, it will work wonders on the inflammation in a very short time. At your age, I feel hitting the inflammation hard will let you heal. Tell us what happens. The "accidents" and frustration and loss of sense of wellbeing are very familiar to most of us here.
Posted 8/13/2009 11:43 AM (GMT 0)
Hi, welcome to Healingwell :) When was the last time you had a colonoscopy? 6 Colazal a day is not the full treatment dose. The treatment dose of Colazal is 9 a day. So if you feel the symptoms coming back, have you tried increasing your Colazal a bit?
Posted 8/13/2009 1:21 PM (GMT 0)
Mike, don't get too worried about some of the things that you're reading here. A lot of people get in remission and stay in remission without a problem. You probably won't find them on online forums because they don't have much of a need for that. And for those of us who are on the forum, we've had a lot of success from sharing ideas about medicines, diet, supplements...so it's all good.
Posted 8/13/2009 2:12 PM (GMT 0)
Rio is absolutely right, remission is a possibility, especially for someone your age. I was first striken at the age of 28, and went into years of remission after about a year and a half - with primitive 1980's medial care.
Posted 8/13/2009 2:23 PM (GMT 0)
Hi Mike1212--welcome to the forum. I think most of us can say Been there, Done that to your situation. Meaning we have gone through it or are going through it and are here to help.
As to your questions about remicade, I just tried it for 2 months and didn't have success. I guess that is the case for about 40% of the people who try it.
Try your best to carry on and be sure to take your medications as directed (i.e. do not taper yourself off of them just because you are feeling better). Also it is always good to educate yourself about UC by reading this forum and doing other research.
Best of luck!
Posted 8/13/2009 3:00 PM (GMT 0)
Hi,
It's hard to adjust to the changes that this disease causes in the way you manage when -- and to some extent what -- you eat. We haven't had a post in a while about how to manage, but I can tell you I learned not to not eat before I knew I was going to be not able to get to a bathroom easily (like driving, or walking, or sitting in a meeting or class). And to give yourself time to use the bathroom before those times, regardless of how you feel. Sometimes you have to get to a bathroom in the middle of something anyway. I only had one accident in all this time, with very active disease, and it was a long time ago, but I probably broke my own rules.

Ask your doctor about taking immodium to calm your gut. I could take as little as 1/2 a pill before heading out the door in the morning, and would calm my gut but not stop things up, which can be really uncomfortable. And if I needed to make my gut stop because of something I needed to do, like give a speech, I would take as many as two pills, with pretty good success. But you can't do that very often.

I started Remicade this year and am so much better! Normal, maybe! I still don't trust my body, but I am not constantly -- and I mean constantly -- planning my next move anymore. My doc says it's part of my DNA by now to think about my gut all the time.

And we need to accept that we have a chronic disease, and taking medicine is not a bad thing. I know some people struggle with that, but you'll do better if you get past that. Sounds like your doctor is conservative about using prednisone, I have always used it to get out of any bad flare that was interfering too much with my health and life. I got the weird side effects, but fortunately it has not had any permanent effects on my health or bones. And I started using it when I was only 25 or 26. So it doesn't have to be bad.

You'll figure it all out. Be strong.
Posted 8/13/2009 3:10 PM (GMT 0)
Hi, Mike. I've been on Remicade for more than three years now, and just recently have been having a little increased frequency after several rounds of antibiotics for an infected tear duct. Hydrocortisone suppositories are clearing that up quickly, and my recent colonoscopy was normal - no active UC.

I live a normal life. I can't believe this, but I actually don't know where the restrooms are in some of the restaurants we eat in often! I no longer have to schedule appointments around my morning bathroom time. So yes, there is hope for the future. And as young as you are, there will be even more effective treatments coming in your lifetime; perhaps even a cure.

There's no question that this disease sucks big time, but you'll be surprised at how well you'll learn to cope. And those coping skills will transfer to other areas of your life when you no longer need them to cope with a flare.
Posted 8/13/2009 3:30 PM (GMT 0)
I don't think I have muct to add to what the others have said! Have you tried just using 1/2 or 1/3 of an enema at a time? It can make it much easier to hold it in, and while you're not getting the full dose, you're still getting the med in there and it's doing a lot of good! As to oral prednisone, don't be scared of it too much. Yes, it's NOT ok to be on it long-term, but short term doses are usually just fine, and it can get you into remission quickly. I did a relatively quick shot of pred...it got me into remission and I was able to taper pretty easily. Also, if you were having 3-4 urgent BM's a day, and calling that "remission," I don't really think you were in remission. So, maybe the pred will get you into a TRUE remission, and then the maintenance meds will be able to keep you there.

Good luck, and feel free to vent here as much as you need to. If you feel that you need it, definitely look for a counselor who specializes in chronic diseases.
Posted 8/13/2009 3:31 PM (GMT 0)
Hi Mike,

It's normal to feel frustrated because UC is a very frustrating disease. You just need to get yourself out of this flare before it gets worse. I am surprised that your GI isn't trying oral steroids, Prednisone, before considering Remicade. The steroids have their own awful side effects that you will get used to but they work really well on the inflammation and will make you feel better in about a week. You will need to taper yourself off depending on how your doc prescribes them. My doctor put me on a medication called mercaptopurine, or 6MP. It is an immunosuppressant that helped me for 4 years. The only downside is that it takes a couple of months to kick in. Therefore, he will prob prescribe steroids along with 6MP to get you under control. There are also risks with 6MP but you will have to read up on the pros and cons before you decide.

I have had 2 major flare ups where I was hospitalized and put on something called a bowel rest. You are not allowed to eat or drink anything to literally give your bowel a rest. You are given IV fluids through an IV and then they insert what's called a picc line to feed you nutrition called TPN. Sounds crazy but the hunger eventually subsides because the TPN is fulling. The donwside to a bowel rest is that it takes a couple of weeks before you are feeling great. They usually discharge you home with your picc line and a visiting nurse comes by to help you with the feedings. I am lucky because I am a nurse and was able to care for it on my own but it's very easy to learn. Best of luck to you. Don't give up. We have all been there. I have tried it all: Asacol, Colazal, Lialda, 6MP, Remicade, Prednisone, bowel rest, Colocort enemas, Canasa suppositories, etc. I am done with this disease. I have scheduled surgery to remove my colon, the j pouch for this October because I am sick of being sick. It's been 10 years. I think everyone eventually gets to this point if they continue to flare. However, hopefully you can get into remission and stay feeling well and not have to worry about it. Key to this disease is taking your maintenance medications!!!! Also, you have to try your best to retain those enemas as hard as it is. I used to sit in hot water in the tub, put a heating pad on my stomach and then lay on my left side and insert the enema. I would distract myself by praying, praying, praying our father and hail mary over and over again until the urge to let it out went away- usually took about 5 minutes. Just try to lay very still and pray- worked for me. Take care Mike.

Nutz
Posted 8/13/2009 5:38 PM (GMT 0)
Hi, Mike Im so sorry you are having a hard time with your uc. Don't ever give up it will get better we have all been where you right now. take car of yourself hugs
Posted 8/13/2009 7:32 PM (GMT 0)
Hi Mike,

Hang in there.  It is tough at first but it will get easier for you.  Only a month or two ago I was in your same shoes, I stumbled upon this website and would read for hours and just cry my eyes out!  I thought- why on earth are we all going through this!!  Being on here has really helped me to see how others cope and it made me want to stand up and FIGHT to get well.  I am learning all I can and trying others suggestions and that has really boosted my spirits.  Knowing that you are not alone is a great feeling and anytime you have questions or need to vent we are here for you.  I hope things start looking up for you!!!  :)

 

Posted 8/13/2009 9:53 PM (GMT 0)
Hey Mike,

Some tips I have are get on a good probiotic and take fibre supplements daily as well (and indefinitely, flaring or not for both fibre supplements and probiotics)....start with a small amount of fibre supplements (preferably pill for cuz they don't tend to have all the sugars, fillers, artificial sweetners which can all exacerbate IBD symptoms) and be sure to drink plenty of water (which you should anyways since IBDers do tend to get dehydrated from having D so much) especially with your fibre supplements.

Relax and don't let some of the posts scare you, stressing to much will end up making things worse, I find regular daily exercise a great way to cope mentally and physically with IBD.

:)
Posted 8/13/2009 9:53 PM (GMT 0)
WOW.... U guys r so awesome.... I didnt think i will get so much replies in less than one day...

U guys have really touched me and im a bit smiling now... today ive been better.

Thank u and thank u for all ur tips and guidance.

One good news is that i saw the link for Cansa discount program and i called got approved bc im low income and canasa is $$$... So hopefully it will reduce my cost abit.

I have some Qs...

1.Can someone define Remission for me? Does it mean a complete feeling good? Not more than 1 bowel movement? No blood? No mucus? No urgency?

2.I see some ppl on remission and NOT takin meds... isn't that bad?

3.What r some crazier Side effect of pred i need to know B4 i start it?

4.Also as far as the sunflower and spinach diet? What is the success rate? i see lots and lots of posts but does it really work?

5. last Q... if i like to ask Qs like this should i start a new thread or just continue it here?

cool  THANKS u guys r awesome!

Posted 8/13/2009 9:54 PM (GMT 0)
I just wanted to add, my GI was the one that suggested I take fibres supplements about 5 yrs ago now, fibre helps sweep the bowels of bacteria but bacteria (typically good and bad) is always present in the GI tract...taking a good probiotic ensures that the gut flora is balanced...fibre can cause excessive gas/bloating initially but this is normal (happens to healthy people too) and once your system adjusts then it will disappear (it took my system 3 months to adjust but was completely worth it)...I've been taking fibre supplements for the last 5 yrs daily with no ill effects, just continued benefits.


:)
Posted 8/13/2009 10:13 PM (GMT 0)
1. To me remission is not feeling like crap and crapping all the time. Formed stools 1 or 2 a day, no extreme urgency, no bigtime bloating etc. Peace of mind.

2. I've been in remission and only on fibre supplements, no meds. For years. Warning: Beware taking any antibiotics, they cause flares in many people. That's what did me in after years of semi-remission. Series of sinus infections, antibiotics and BAM.

3. Presnisone: stops inflammation and diarrhea and blood etc. IN ITS TRACKS for me. Side effects are weight gain, swollen face, insomnia, nervousness/anxiety. Has to be tapered very slowly. Long term use can cause bone loss and other bad stuff. Positive effects last a very long time for me.

4. Never tried the sunflower and spinach regime. Can't talk about it knowledgeably.
Posted 8/13/2009 10:37 PM (GMT 0)
The whole remission thing is different for a lot of us (I'm pretty sure). I could be considered in remission, maybe/almost, but I don't have the piece of mind that I want. I still go a lot, but I was before I got UC, so, I don't know what to think anymore.

After two years of not eating food when I know I'm going to have to be somewhere and I don't want to worry about having to go, it's really hard to figure out a way to work that back into my normal routine.

I have started to feel a TON better since taking Imuran (azathioprine). I started that back in January, and I think it took about 2 months for me to see results.

Soak up as much information as you can about UC and treatments. I find that even the best doctors forget that they are taking care of real people and not just a disease. It really sucks, but, it's reality.
Posted 8/13/2009 11:01 PM (GMT 0)
1.Can someone define Remission for me? Does it mean a complete feeling good? Not more than 1 bowel movement? No blood? No mucus? No urgency?
For me, remission is 1-2 BM's day, no blood (I didn't have much anyway), and most imporantly NO URGENCY! Basically, my pre-UC normal is remission.
2.I see some ppl on remission and NOT takin meds... isn't that bad?
Well, it's a personal choice, but I honestly feel it's not a good idea. Studies show that people who stay on maintenance meds have longer periods of remission. To me, it's worth it to take meds daily to help prevent flares. However, some people have found a lot of success with diet and supplements. I'm too scared to go off my meds to really give it a shot. And I seem well-controlled so far by my Rx meds and probiotics.
3.What r some crazier Side effect of pred i need to know B4 i start it?
I basically had no side effects other than slight moonface. The more common immediate side effects are insomnia, moodiness, weight gain, etc. These are all just temporary. The scary ones, which are usually not a problem with short term use are bone loss/osteoporosis.
4.Also as far as the sunflower and spinach diet? What is the success rate? i see lots and lots of posts but does it really work?
I doubt anyone can give you a true success rate, as this diet hasn't been tested. It's just something that people on here have tried, and it works for some, but not for others. I don't think it's harmful to try it, though.
5. last Q... if i like to ask Qs like this should i start a new thread or just continue it here?
Just continue here.
Posted 8/14/2009 12:25 AM (GMT 0)
I am so sorry to hear how down you are. I had the same situation with proctitis turning worse. Canasa was helping but I stopped taking it because I couldn't afford it and ended up having to get on 9 asacol a day to get out of a major flare. I still consider myself lucky to have been helped by Asacol, a lot of people never have any luck with 5ASAs.

Have you had a colonoscopy? stool tests?

maybe you can use your rectal meds more often?

Diet has never helped me at all but a lot of people have good luck. In my opinion, anything is worth a try. I tried the SCD Diet with no luck. You should look it up on google, a lot of people have luck with it. Have you heard of fecal transplantation? I've never done it but I have heard positive information. Have you ever been treated with Flagyl or anything to kill off a possible bacterial infection? Just some ideas, it's good to stay hopeful. I see a Dr at UCLA too. We must be neighbors but I don't go to school.

you could try herbal anti inflammatories like Curcurmin, Turmeric, Boswelia, Slippery Elm, Bitters Compund, Cal/Mag... Just to name a few. Best to introduce one thing at a time.

Posted 8/14/2009 2:34 AM (GMT 0)

Judilyn said...
I can't believe this, but I actually don't know where the restrooms are in some of the restaurants we eat in often!

Kablooey!! My mind was just blown!
LOL
Posted 8/14/2009 3:49 PM (GMT 0)
HA! Me too, AmyWaffle.

=]
Posted 8/14/2009 6:53 PM (GMT 0)
     My heart goes out to you Mike.  I also have ulcerative proctitis but I was 52 when I came down with this disease.  I do believe I had IBS for years before though.  My doctor usually starts me on 40 mgm of prednisone with a weekly 5mgm taper.  I've been on 6MP for about seven years and not too happy with it.  With this flare (which started at the end of May) he increased my 6MP to 100 mgm which sent my white count plummeting down to 1.4 (normal range is 3.8 - 10.8).  Being a former lab tech I am NOT happy with this.  God forbid I come down with even a cold...I have no antibodies.  My GI doctor stopped the 6MP when he saw those results.....if he didn't I sure would.  At the moment I am on 15 mgm of prednisone one day and 20 the next, six Colazals, Cort enema nightly and Canasa in the morning.  I know what you mean by the enema.  It is very difficult to hold in.

     I see where some people take a fiber capsule daily, but fiber irritates me terribly while flaring.  I stick to a low residue diet.  I do, however, place a tablespoon of Red Mill ground flaxseed meal on my rice cereal daily.  This is a great way to get the fiber without irritating your colon.   I eat salmon every other day.  Never tried the spinach and sunflower butter diet.  I do have the SCD book but haven't tried the diet yet.

     Good luck to you and God bless.

Posted 8/14/2009 9:20 PM (GMT 0)
Mike dnt worry. I was dx in Jan'09 and m still not in complete remission. Things did improve with canasa but flare came back soon.
How many times are you taking canasa...i use it twice a day. Try to use canasa twice - morning & night along plus also take your oral medication.
I would suggest try to fight with your flare up before you give in and move to next stage of stronger medicine. This is the suggestion i got from HW members and m still fighting :-)
Dnt worry abt accidents... happened with me when i was going to return rental car and had a loooooooooong drive before i could stop.

TIP :-)
1. Something i came to know with experience as well as through forum members... when using canasa check for its color change ....when it comes out as dark purple/burgundy color with stools - means you are still flaring & when it comes out as white medicine with stools....means u r moving towards remission. :-)
2. If possible try to lie down for 25-30minutes after using suppository....you will be able to hold it in for a longer duration, even though the "information" says "lie down for few minutes" :-)
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