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Ulcerative Colitis
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Posted 10/10/2011 1:57 AM (GMT 0)
Hi everyone, I am DESPERATE! I have not been in remission since 2008. My UC has become very severe since the beginning of this year. I have been on 40mg of prednisone since January, switched from Asacol to Apriso, started Cimzia injections in May, unable to take Remicaide due to a severe allergic reaction, referred to Vanderbilt for help, and I am currently sitting here in the hospital for my second time in two weeks.
Vanderbilt would like me to increase my Cimzia injections & start Methotrexate. I am suppose to have ANOTHER colonoscopy & EGD tomorrow or Tuesday. The doctors here just stare at me now when they come to exam me with bewildered looks on their face. I am physically & emotionally drained. I am at a point were I just can't take it anymore. I can't take the pills, injecting myself with meds that offer no help,pain, nausea, fatigue, & the constant disruptions in my life. I'm worried I will lose my job.

Here's my question/questions....When is it enough? We are looking into surgery. Removal of my colon with a J-pouch. I am 25yrs old, and I am so afraid of what this might mean for my young life, but I am at the end of my rope. Is their anyone out there who has had this surgery? I would love to here positive and negative feedback, and any other advice you have to offer.
I am sorry this post is so long. Thank you for your time! cry
Posted 10/10/2011 2:09 AM (GMT 0)
Three things I've always told myself I'd try if surgery became my last option- worms (though expensive and travel involved), fecal transplant (if you can find a doctor to do it, or DIY), and triple antibiotic therapy.
Posted 10/10/2011 2:11 AM (GMT 0)
I had jpouch surgery 10 years ago due to refractive disease. Best decision I ever made. It's not an easy surgery and the recovery is long but one is finally healthy which makes recovery easier. The best recommendation I can give you is to get a top CR surgeon; one who has done hundreds of these procedures.

Sue
Posted 10/10/2011 2:30 AM (GMT 0)
My 13 yr old daughter had a colectomy 12 days ago. She suffered for 3 years; tried just about every medication and countless rounds of Prednisone. She hasn't been able to go to regular school for 1 year. Granted, it is early in the game to comment on how this will affect the rest of her life (she will have take down surgery later this year) but she had no quality of life for the past year. It's a very personal decision...I suggest you meet with a surgeon and discuss the procedure, recovery, etc. You need all the info you can get. Good Luck :)
Posted 10/10/2011 2:44 AM (GMT 0)
I'm so sorry for the pain your going through right now, I dont know if i could be any help, but i was just wondering what dietary changes you've made since being diagnosed? What changes in your life physically and mentally for your lifestyle have you made? Whats a normal day like? Where do you stressors come from?
Posted 10/10/2011 5:37 AM (GMT 0)
your situation is similar to mine
I tried 6mp and imuran. now remicade has stopped to work
Posted 10/10/2011 6:00 AM (GMT 0)
If you have been on pred at 40 mg. since Jan. 2011, that should tell you that surgery may be your option. I have heard nothing but supportive and positive comments from people who have had surgery.

I really, really feel bad for what you are going through. Thanks for reaching out to us.
Posted 10/10/2011 7:53 AM (GMT 0)
Please try fecal transplant!! I was where you are now, i couldnt take anymore of it. i hadnt been close to remission for over 2 years and nothing helped. I did it, and two weeks later i was in remission for the first time! i now only go once every 24 hours, just like a normal person! I did it at home and it was easier than i thought. I can give you the protocol and help you through it. please email me [email protected] its so worth a try! =]
Posted 10/10/2011 2:35 PM (GMT 0)
Before you look to remove your colon you should look at your health intake and think "Am I doing everything I can for the disease?". Because when you realize you were deficient in something or had bad lifestyle habits that could of fixed it, you might regret taking out your colon. You could try to heal yourself OR live without a colon, pooping 6 times a day from a J pouch, guaranteed.

Im thankful I didnt make an irrational decision to get mine taken out when I found out a week later I just had a mega vitamin D deficiency and was reacting badly to artificial sweetners and gluten. Another thing you should give your body is melatonin. Mother nature has intended out bodies to get melatonin at night, but with bright lights, computer screens and messed up sleep schedules it greatly affects your health and GI tract.

Id say try vitamin D 5000ui daily and melatonin 3mg at night. Its cheap and what mother nature designed our bodies for! And a ton of research behind both. They both serve as a natural anti depressant (its proven) and youll get the best sleeps of your life with melatonin :P its natural and non addictive. Gives those a try before you give up on healing your colon.

Also, never eat breakfast, its pretty unnatural and aggravates the GI tract. 10,000 years ago before farms, humans were designed to hunt and work for food and eat at the end of the day.

Hope this advice helps!
Posted 10/10/2011 3:17 PM (GMT 0)
I would suggest getting with a doctor who believes in triple combo antibiotic therapy. It helped me a little, never remission.
Posted 10/10/2011 4:02 PM (GMT 0)
Vitamin D, melatonin and not eating breakfast as "fixes"?  Seriously?   This is the first time in my 43 years of living that I have heard someone say "eating breakfast is unnatural" and that it "aggrivates the GI tract"!    So, not eating all day and then eating a big meal at night wouldn't "aggrivate" the GI tract?  Please tell me how your colon knows whether it is day or night??  confused confused   
Posted 10/10/2011 5:01 PM (GMT 0)
For me I had enough and opted for surgery when I had absolutely no quality of life left. That and the fear of actually dieing....I was in really bad shape.

Surgery was the best decision I have ever made. I love my j pouch. Beats the heck out of being on dangerous drugs or antibiotics the rest of my life too.
Posted 10/10/2011 5:41 PM (GMT 0)
Yikes, you are having a hard time, sorry to hear it. Interestingly, you are the only other person I have seen on here who is also on Cimzia.

I don't know if you want try the alternative therapies listed, but it certainly can't hurt. I can also understand if you are just fried and want a solution. There are some people on here who have had surgery who are great, I have had some good conversations with them as I am not far from surgery myself. Check out the 'ostomies' forum too, lots of info and folks with experience over there.

And ColitisMastery--lay off the guilt a little, will ya? 'irrational decision'?? I agree that is not a bad idea to check out vitamin levels and food sensitivities, but its not the solution for everyone, and this person clearly has been through the ringer recently. And I am not even going to touch the 'never eat breakfast' comment...
Posted 10/10/2011 5:57 PM (GMT 0)
Deciding to have your colon removed because you are seriously ill and out of options is NOT irrational and don't ever let anyone tell you otherwise. I wish you the best.....
Posted 10/10/2011 6:28 PM (GMT 0)
And don't be misled by the comment on "pooping 6 times per day". Emptying a jpouch usually occurs when one urinates and is as fast as urinating. So while we do have a higher frequency, time spent on the toilet is actually less. I have no idea what my frequency is because I have no idea how often I urinate in a day.

I too loved the breakfast comment. How does the poster know what the diets were like for the general population 10,000 years ago? Very funny!

Sue
Posted 10/10/2011 6:32 PM (GMT 0)
Sorry you are going though this. I opted for permanent ileostomy surgery and it has given me my quality of life back in every way that I had hoped for. My life feels normal and I am doing everything I did before except that there is a pouch under my clothes that no one would ever detect if I didn't tell them. I am 11 months post-op and work full-time, travel, do lots of outdoors sports and spend time doing things with my friends and family with no worries about colon pain or finding bathrooms. I keep a blog (click the icon in my profile) so you can check out how things turned out for me after surgery.

I was on Prednisone tapers a few times since 2006 when I was officially diagnosed, and then one very high one (60 mg) when I had a severe flare in autumn of 2010 and was admitted to the hospital for a couple of weeks. Even at this high dose, Prednisone completely stopped working and the doctors said taking Prednisone was no longer an option for me due to the risks of bone loss. I was in rough shape, rapidly losing tons of weight and declining quickly and the choice came to Remicade or emergency surgery. I tried a dose of Remicade and it ended my flare in 5 days and got me out of the hospital. However, I had a horrible reaction to it with excruciating joint pain a week later. I couldn't even walk when the pain was at its worse. That was it. I became excited for surgery. I did lots of research and saw that so many people were happy with life after j-pouch or ileostomy surgery... including several people I contacted and talked to in-person or on the phone. My doctor said that over 90% of people are happy with the results of their surgery. Those sounded like pretty good odds to me.

At that point, I was not willing to try diet modifications or fecal transplantation because for the first time, I realized UC could be a threat to my life. I wanted my colon out of there. The one Remicade infusion bought me a month of relative colon health, and used that time to gain strength and quickly get to a top CR surgeon for a consultation, to schedule surgery and to have the operation before I slipped back into a flare once the Remicade wore off. I knew that if I flared again, with Remicade off the table, things could get bad. I never wanted to have to get emergency surgery. It is much better to get surgery when you aren't in horrible shape and have time to choose your surgeon, get a good stoma placement etc.

Before my final flare, I was on a strict gluten free diet because I also have Celiac Disease. It did nothing to help my UC though. I never had much interest in the SCD diet because I feel that eating a variety of foods and being able to enjoy meals with family and friends... go to picnics and out to dinner etc. is a big part of my quality of life. I did not want to give that up. I have not had to with surgery. I eat most anything I want (except gluten).

These are the things you need to ask yourself. What are you willing and not willing to do? What fits best with your lifestyle and what you want out of your future? Surgery might be just the thing to get you there. Your answers will be unlike any one else's because they are based on your values. It is a deeply personal decision. Do lots of research to get accurate facts from a variety of sources (doctors and surgeons, internet, books and magazines, talking to people in person if possible) and then follow your heart. Do not let fear of the unknown (and all the horror stories out there) stop you from moving forward with whatever route you decide on.

On a side note, I was diagnosed with Osteopenia last week due to the Prednisone use. My doctor thinks it may be reversible with diet and exercise now that I am off the stuff, but I am really glad I will never have to take Prednisone again. It sounds like you have been on it a while.
Posted 10/10/2011 6:47 PM (GMT 0)
Thanks for all the help! Yeah, I think I'm just at a point now that I am afraid of the consequences of these medications I am currently taking, and I highly believe surgery is in my future no matter what I do anymore. I am very afraid if things continue the way they are I will end up with colon cancer.

As far as other remedies...I have tried everything. I currently taking VD & Calcium Supplements plus Mult-vitamins. I have tried a gluten free diet in the past w/ no success. I am currently on a low-residue GI diet, but it honestly does not matter. As soon as food goes in it comes right back out. I have been to wholestic type doctors etc. You name it I believe I have tried it!

I have never heard of the worm suggestion or fecal transplantation??? That sounds somewhat interesting.

Definitely, never been able to go w/o breakfast. That is one meal that I actually need to make it through the day. I am sick otherwise.

I go in for my EGD and colonoscopy Wednesday. They want to make sure I haven't developed Chron's disease. Doctor just came in and started me on IV iron too.
Posted 10/10/2011 6:51 PM (GMT 0)
Triple antibiotic combo therapy pulled me out of a year long flare where I was steroid dependant. If I were in your shoes, these are the options I would consider in order of preference:

1. Fecal Transplant by a doctor with experience doing it (hard to find!)
2. Fecal Transplant at home
3. Triple Antibiotic Therapy
4. LDN (low dose naltrexone)
5. Humira?? I don't know if your allergy to remicade would make this a no-go
6. Drug trials?? There may be other therapies you could try, like other biologics perhaps?
7. Surgery

Having said this, I am not a doctor and I don't know your medical history, so you would need advice on which of these would be appropriate and safe for you.

Oh yeah, one more thing. Some people respond well to high doses of VSL#3DS which is a probiotic (live healthy bacteria). It can restore the balance of good/bad bacteria in your gut, especially if you have taken a lot of antibiotics.
Posted 10/10/2011 7:47 PM (GMT 0)
I wish you well in making a decision. I will pray you get better. If you are so inclined, I recommend you contemplate Psalm 40...if it's not your thing, listen to the U2 song "40".  Good luck and God bless you!
Posted 10/10/2011 7:48 PM (GMT 0)
My husband leads worship at a handful of churches in our city and he has been playing that song the past couple day....I think he is planning to do it one night for church! haha
Posted 10/10/2011 8:04 PM (GMT 0)

C_G_K said...
Triple antibiotic combo therapy pulled me out of a year long flare where I was steroid dependant. If I were in your shoes, these are the options I would consider in order of preference:

1. Fecal Transplant by a doctor with experience doing it (hard to find!)
2. Fecal Transplant at home
3. Triple Antibiotic Therapy
4. LDN (low dose naltrexone)
5. Humira?? I don't know if your allergy to remicade would make this a no-go
6. Drug trials?? There may be other therapies you could try, like other biologics perhaps?
7. Surgery

Having said this, I am not a doctor and I don't know your medical history, so you would need advice on which of these would be appropriate and safe for you.

Oh yeah, one more thing. Some people respond well to high doses of VSL#3DS which is a probiotic (live healthy bacteria). It can restore the balance of good/bad bacteria in your gut, especially if you have taken a lot of antibiotics.

I fully, completely and strongly second everything that is said here. Seriously.
Posted 10/10/2011 8:43 PM (GMT 0)
Ok, I'm defiantly going to research and suggest these to my GI doctor. Thanks!
The only thing I can't do is the drug trials. They tried to get me involved in these, but I'm not accepted b/c I have seizures.
Posted 10/10/2011 9:28 PM (GMT 0)
JellyBean,

Don't expect your GI doc to embrace all these ideas with open arms! Hopefully your doc is open minded enough to think outside the box since you don't have a lot of traditional options left. Don't be afraid to seek out a second opinion too.

Best wishes with whatever you decide to do!
Posted 10/10/2011 9:52 PM (GMT 0)
That sounds awful, three years without remission...you must be super strong willed. I'm sorry you've gone through all that for so long.

Believe me, I NEVER wanted surgery. But...so far, I'm very glad I did. For me, there was nothing left to try. I'd been through every drug including some 'alternative' drugs as well as diets etc.

I'm not saying something else might not work for you, but flaring for three years can't be nice for you at all. Surgery has given me my life back and I had some of the worst years of my life with UC. And that was between 20-27. I only wish I'd had it done sooner.

Good luck and I hope whatever you decide works out for you. :-)
Posted 10/10/2011 10:54 PM (GMT 0)
i had surgery over 4 years ago, i opted for a permanent ileo (the bag) though. And i think its great! i'm very happy with my decision, i just wish i had done it earlier.
If you choose surgery, please don't ever feel like you "gave up" or are weak for choosing that option. thats the absolute opposite of the truth! surgery isn't giving up, its beating UC and kicking that colon out!

good luck with whatever you decide!
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