HealingWell
Search Close Search
☰

Accutane induced colitis

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/21/2011 12:37 AM (GMT 0)
Dear healingwell UC forums,

I was diagnosed last year with UC after taking 40mg of accutane for 1 year

I have no family history of this disease and after doing some research, I am positive my UC was chemically induced by isotretinoin

I have [become quite depressed] upon realizing that I was inflicted with a chronic, uncurable disease, and was wondering how you guys cope with this terrible disease. It causes me to have severe depressive moments where I wish I could have it all go away, regretting the fact that I agreed to take accutane in the first place.

I am taking Apriso at the moment, but fear that one day it will be ineffective for me

My deepest fear, as revealed to me in a nightmare a couple days ago, was having bloody D

My dream was so vivid, so intense, all because I ate some pepperjack cheese earlier and had some blood on wiping

What I've found works for me:

BLUEBERRIES, scientific research confirms its efficacy in dealing with IBD, maybe a cure within these magical berries
Psyllium husk fiber, nicely shaped stools
Dr. Mercola's Probiotics, not sure if these work or not

What hurts me:
Milk
Pepperjack cheese (never again!)
Corn

Anyways, more hope came from googling "gene therapy ulcerative colitis"
from http://www.sciencedaily.com/releases/2008/05/080520163044.htm

Its the year 2011, does anyone else here have reason to believe in a cure, possibly in the next decade or two?

What other alternative treatments have you guys heard about?

I honestly do not want to be dependent on Apriso for the rest of my life, I try to take as few pills as possible as infrequently as I can get away with, because I fear one day it will no longer work and that I would have to up the dosage or go up to steroids

I would spend every penny I have to cure this disease

Thank you

Post Edited By Moderator (songlady) : 6/20/2011 6:55:08 PM (GMT-6)

Posted 6/21/2011 12:54 AM (GMT 0)
Welcome, and I understand your despondency at having this diagnosis we all live with...... but I do need to commend to you the forum rules, in particular, no discussion of suicide.

It is indeed difficult to get one's head around having a chronic disease. I remember having difficulty with that myself, when newly diagnosed..... before I had my kids, before I took up horseback riding, singing and performing, and the various other activities that have been part of my life after my UC diagnosis.

One of the first things I did was to get over my fear of pills. If my body has, to put it simplistically, a chemical imbalance, I see no reason to be phobic about taking a medication to correct that.

The 5-ASA medications are very safe - safer than having a flare. The 5-ASAs are mostly topical in how they work... and a lot of us here have had excellent experiences with the retention enemas. Since my diagnosis so many new medications and such progress has been made that I feel very optimistic about a cure for UC. When I was first diagnosed, there was sulfasalazine and prednisone, and maybe steroid foam. Now there are Asacol, Asacol HD, Lialda, Colozal, Pentasa, Apriso... and Rowasa, Canasa,and the 6-MPs, and the biologics.....

For myself, the role of probiotics is amazing. They have helped me enormously. I may try the home fecal transplant route, also.... that makes a a lot of sense to me. Other folks here are doing well on LDN (transdermal), and the Specific Carbohydrate Diet.... we are all different in how we respond, and the only thing you can do is try a few options.

Are you flaring at present? How far into the colon is your UC located? If I were you, I'd take the Apriso (or other 5-ASA) for the moment... who knows what the future may bring.

Some talk with a good therapist might help you regain some perspective.
Posted 6/21/2011 1:13 AM (GMT 0)
Hi fightUC, like you I also had my first flare of UC shortly after a 4 month course of Accutane. You must take solace in the fact that the decisions you have make were with the best of intentions, and even if you could parametrically show the causation of UC from Accutane, you can still argue that UC could have been triggered by any number of variables and circumstances later on in life.

What's important is to understand that while the disease is not always pleasant, it is not debilitating either. As songlady mentioned, us UCers live fulfilling lives, and having this disease does make you appreciate the good times a lot more.

I too believe that we are close to a cure for this disease, and that barring a cure the therapies available still let you live normally. So keep your head up (I know it is easy to say, but positivity is probably the cheapest therapy out there :) ), and do not blame yourself for making a decision to improve the quality of your life - it is that same tendency that will keep you happy.
Posted 6/21/2011 1:17 AM (GMT 0)
I have ulcerative pancolitis, and I believe I am in remission atm (no blood, no D)

What scared me was seeing blood on wiping due overindulging on pepperjack cheese

I am 21, and hope to find a cure traveling to the corners of Earth if I have to

Transdermal LDN seems promising,
Nanosphere Gene therapy?
Blueberries/black raspberries,

I don't want to introduce too much politics here, but the basic idea that there is more money in treating a disease than in curing a disease shifts incentives towards treatment rather than cures, and it makes me wonder what wonderful breakthoughs we could all be enjoying if not for these backward incentives

There is a controversy involving the Burzynski Institute and the cure for cancer, and makes me wonder if UC is similar

I have no doubt Big Pharma rakes in lots of cash from keeping UC patients treated with pills/doctor visits, rather than curing us

Thank you for your strength in dealing with this disease, the hope you have given to me is extremely powerful in itself
Posted 6/21/2011 1:37 AM (GMT 0)
We've had the political discussions, and to be honest, I don't think that's the best use of the forum.

There seems to be a number of causes of UC. I asked my GI last year if he thought UC might in fact be 6 different diseases, and he said, " More like 100!" I think this is part of what makes finding a cure tough. One person responds to probiotics (which, for my money, possibly do more for me than any other medication) while another finds no help there but does well on, say, Asacol but not Pentasa or Apriso. There has been a thread in the past few days about combination antibiotic therapy. Someone else will find remission through the SCD, while others of us find that diet changes don't effect our UC at all.

Over the past 25 years, I've had toilet bowls red with blood a dozen times a day.....and, yes, I've dreamt about the blood, too.

Here you will find many brave, good, smart people who grab hold of life despite UC, who question doctors and experiment on ourselves (sometimes with very good results).... who have many, many differing and thoughtful opinions. Welcome aboard!
Posted 6/21/2011 4:21 AM (GMT 0)
hmmmm. pepperjack cheese, yes, that would throw just about anyone into a flare.

sigh....

This again sounds interestingly familiar.

q
Posted 6/21/2011 11:54 AM (GMT 0)
fightUC,

Yea, UC sucks. And it is overwhemling when you first find out this is something you'll have the rest of your life. But if you learn what you need to do to to make yourself better, you'll feel more empowered and that you have UC, instead of UC has you. Sorry it's such a bummer.

What other alternative treatments have you guys heard about?

I'm surprised your body can handle blueberries - great for you.

The SCD diet has helped many, you may want to check into it.

Also adding supplements: omega 3 or krill oil.

Have you had your vitamin d3 levels checked?

Slippery elm bark powder is very good at coating the whole intestinal tract - a natural equivalent to 5asa, you could add it and see if it makes a difference?

A good probiotic, like VSL#3 - which contains 450 billion strains ( I think Mercola's only contains 60 billion).

L-Glutamine powder - at least 15 grams - to help with colonic repair.

I add the L-Glutamine to my Mercola Pro-Optimal Whey Protein shakes ( I have 2 a day at least) - made of course with almond milk.

And lastly, I am a big proponent of LDN. It's effective and cheap. Most doctors won't give it out, because BIg Pharma doesn't benefit from it. But you can find LDN prescribing doctors. If you choose to go that route, I would recommend transdermal LDN. And if you'd like more info, I'll be glad to post it here for you.

Good luck to you.


 

Posted 6/21/2011 11:56 AM (GMT 0)
fightUC,

One more thing: since your UC is accutane induced, can't you be a part of the class action suit going on?

I've seen lots of ads for accutane suits by various different lawyers...

Posted 6/21/2011 3:02 PM (GMT 0)
Hello There,

I empathise very strongly.  I too still battle bouts of depression and fear. In fact I joined this forum 6 weeks ago because the fear of going away on my 1st trip in 10 years (due to colitis) was causing so much anxiety that it sent me into a mini flare.  I'm taking an anti-depressive, see a therapist on occasion and I started with hypnosis CD's that really, really helped the anxiety when I was away.

This sadly is a chronic disease. you will have flares and periods of remissions.  Or for someone I know just stopped coffee and her colitis disappeared for 3 years!  Or you may go into very long periods of remission on its own.  Some people have seasonal flares.  Or you could be like me an others who live in constant flares.

I too was on 3 bouts of accutane, but my mom has uc so I was pre-disposed.  It does make me wonder, if I didn't take accutane would I have developed colitis too?  If you live in the States there are class action lawsuits for accutane and IBD, but none in Canada.

As far as help. If you need the meds take them.  HAving a flare is worse.  I do everything to avoid a 30 x/day for 3 month flare again.  I understand it's overwhelming and nobody likes to take meds.  But it is not unusual for docs to put you on several or change you up as needed.  I have a drawer full of meds.  Sometimes one works and then it doesn't then I switch back and it works.  This disease has a lot of trial and error to it BUT there are options.

In addition to the plethora of meds already listed try seeing a naturopath, chiropractor, research herbs and a really good probiotic.  I would strongly recommend SCD for 3 months.  If it doesn't work then move on. 

There is a lot of success with fecal transplants although I'm not sure I can get over the "yuck" factor yet!

There is life with colitis!  Sometimes you just have to adjust your lifestyle, take meds, watch your diet and take meds.  But there can be quality to life.  It's taken me years to figure that out but looking back on the last 10 years I have survivied and accomplised my goals.  It's just taken my longer then most.

You are strong and will get through this.  Seek help for your depression.  There is nothing to be ashamed of and although we are just names, know that there are caring people on this forum who know exactly what you are going through.

Ruby

Posted 6/21/2011 3:11 PM (GMT 0)
I am sorry that you are going through all of this. Therapy really helped me cope (I went to 5 visits and may need to go again sometime, many people go for many reasons for different lenghts of time). I was very angry for a long time that these diseases happened to me, by nothing I did and they are out of my control for the most part I am at the mercy of meds.

It also helped to get empathy from others on this board. Sometimes I get depressed, sometimes I cry....but then I pull myself up and try again.

I tell myself it could be worse, I also have kidney disease. I think of the children that need kidneys and are on dialysis and some die. I tell myself life isn't fair and that everyone get's whacked with something. I think of people in third world countries who die from starvation. Then I realized that it is horrible what has happened to me, but I have much more than many others, that I want to live my life to it's fullest that I owe that to myself.

I hope one day I can help others, but first I have to help myself physically and emotionally.
Posted 10/8/2015 12:37 AM (GMT 0)
I was on accutane for two years, and developed ulcerative colitis in the last 2 months of my treatment and I am 18. I would do anything to know if accutane actually induces this disease. I can guarantee most people who get colitis and took accutane before it, will not report it to the manufactures or be counted in the numbers that the studies trying to display a link between the disease and accutane.
Posted 10/8/2015 12:43 AM (GMT 0)
There are class action lawsuits out there regarding Accutane and UC.
Posted 10/8/2015 1:42 AM (GMT 0)
I don't think acutane causes UC it's a trigger
Much like people get UC after illness or a round of antibiotics.
Posted 10/8/2015 2:18 AM (GMT 0)
www.accutane-ulcerative-colitis.org
✚ New Topic ✚ Reply