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Posted 7/5/2011 6:58 PM (GMT 0)
Less than three weeks off prednisone and I am back to having D 10-20 times/day with blood. I've been on Humira for three months. I am guessing it is a failure. I am being prescribed Cortfoam. I've never been able to retain enemas, but I am told I will be able to retain the foam. This sounds like a another temporary fix to me just like prednisone.

I went camping this weekend (crazy I know) and I realized I no longer want to live like this. I am 21 years old. I should not have to wear diapers. I scheduled a surgery consultation the day I came home. It is November 2nd at the Cleveland clinic with Dr. Dietz. I am just wondering what am I suppose to do until then? Just keep taking steroids?
Posted 7/5/2011 7:05 PM (GMT 0)
Hey bostwis, I am sorry you're not feeling well but I would like to say congratulations on making the decision to consult with a surgeon.

One thing that you may opt to try is an antibiotic therapy, I've seen a few people having luck with one lately. You could also try Fecal Transplant, I am not sure if this is something you would be willing to try but I think I would if necessary.

Have you considered LDN or clinical trials?

Just trying to give you some ideas for things that could help you until you decide whether to have surgery. Have you tried Imuran? I don't see it in your failed meds list. Methotrexate is another immune supressant that is used more for Chron's but some have luck using it for UC. Worms are a posibility but they are very expensive.

There is as ticky thread at the top of the forum called "UC Resources", a few posts down there is a list of Alternative & Medical treatments - please take a look, you may find somehting you think it worth trying.

I hope whatever you choose you find happiness, even if you have to wait until November to get there.

I think you will be able to retain the foam, it's not a lot of fluid and it dissolves. I hope it helps you.

Posted 7/5/2011 7:08 PM (GMT 0)
You're right about the diapers. I hope you get some great advice.

How long were you on the pred before you stopped three weeks ago?

November 2nd, huh? An ominous day. I was diagnosed by colonoscopy then and I hate that d*mn day. mad

Posted 7/5/2011 7:35 PM (GMT 0)
I understand that I have other options to try, but I've already wasted a year of my life trying different medications. I do not want to waste another year. I was on prednisone since March. I feel like I've been on it for a whole year. I've only been able to stay off of it for 2 months at the most. I feel like getting the surgery done at a young age will make for a good recovery.
Posted 7/5/2011 7:50 PM (GMT 0)
Just throwing it out there....have you tried a diet change, something like an antifungal diet, the SCD, or even the extreme Maker's Diet? I know of at least one person -Crazy Harry- on the Crohn's forum who was scheduled for surgery, experimented with The Maker's Diet and got well enough to forgo the surgery. Of course, everyone's symptoms and severity of UC/Crohn's is very different and sometimes there is no other option than surgery.  However, many here, including myself, have had improved symptoms, or gotten well again eliminating and/or restricting certain foods from our diet along with taking other supplements like probiotics, immune boosters, and assorted antimicrobials. Hope you can feel better soon.
Posted 7/5/2011 8:08 PM (GMT 0)
bostwis1,

Sorry it's to the point where you have given up. And I realize it must have been tough to finally get to the point where you picked up the phone to make a surgery consult. UC sucks. But remember that surgery is not reversible.

It is November 2nd at the Cleveland clinic with Dr. Dietz. I am just wondering what am I suppose to do until then? Just keep taking steroids?

Might I suggest you try LDN, Transdermal LDN? It's no secret that I am a strong proponent of Transdermal LDN, and I do believe, that together with an SCD diet would help you greatly, and who knows may even be able to give you pause until your Nov. 2nd appt.

What have you got to lose, except to start feeling better?

I would be glad to post any information here on LDN, if you like. Just let me know.

I hope you start to feel better soon. Don't give up yet....please.


 

Posted 7/5/2011 8:19 PM (GMT 0)
 

One last note bostwis1,

https://www.healingwell.com/community/default.aspx?f=38&m=2153471&p=1

Did you see this post by beatUC:

No, surgery does not cure UC:

www.internalmedicinenews.com/speciality-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show/32ee77e67e.html

http://www.ibdsupport.org/forums/topic/116136-help-post-surgery-nightmare/

Many more stories and studies like this.

In my opinion, surgery should be the very last resort, to save your life.

 

Wanted to share this with you, given your difficult decision...

 

Wishing you better health.

 

Posted 7/5/2011 8:26 PM (GMT 0)
I stayed on around 20 to 30 mg of prednisone until my first surgery. Even on it I still flared but at least it was manageable with the prednisone. Can you get in any sooner? November seems like a ways away. I was able to get into the Cleveland Clinic for a consult in just a few weeks and then had the first surgery two weeks later. I had to have the three-step procedure and had my last surgery in December. It takes the body a while to adjust to everything but overall I'm doing well. You are not giving up but taking charge of your life. Good luck to you.

Posted 7/5/2011 9:14 PM (GMT 0)
so sorry you are at this difficult point. You need to be able to live your life. You have to make the best decision for you.

I did not see imuran or 6mp (I think you can take one or the other). Also, I saw someone post about LDN, I would check that out and see about a clinical trial.

I know for myself, if I do have to have surgery, I want to know that I did everything I could first.

I would also recommend getting a second opinion, just for your own peace of mind, you may get more info or a confirmation of your current course.
Best of luck to you on this difficult time. Take care.
Posted 7/5/2011 9:36 PM (GMT 0)
Thank you for the responses. I don't view surgery as "giving up." I view it as getting my life back. I do not believe the studies that show a low success rate. I was not even comfortable with being on Remicade or Humira. I rather not have a colon than not have an immune system.

I don't believe diet modification can get me out my flares. They are too severe. I've tried gluten-free and I could not stand the food. At least with a pouch I will be able to eat what I please and not have to live on grass and tree bark. Who honestly enjoys those diets? lol. I am willing to try things until my appointment, but not long term.

I was told that was the earliest I could get in. Should I call again?
Posted 7/5/2011 10:13 PM (GMT 0)
When I had to buy a package of Depends to wear to be able to attend my niece's wedding, that's when I new it was time to finally take charge to get my life back and I went to see a surgeon for a consult. I didn't have to wait that long though. Is there any way you can get in sooner? If it were me I would keep bugging them to move you up. I hope you can get in there a lot sooner. You sound just like I did when I was at the end of my rope. I hated taking Remicade...I'm actually glad it didn't work b/c now I'm drug free. Deep down inside you just know when you are ready. Best wishes to you...hang in there.
Posted 7/5/2011 11:21 PM (GMT 0)
bostwis1,

I am willing to try things until my appointment,

So, does that mean you are willing to be open to LDN? And give it a try until your appt?

Posted 7/5/2011 11:30 PM (GMT 0)
bostwis1,

My daughter's surgeon had told me it not giving up it's another altenative for a better life. Trust me that was the last thing I wanted for my 15 year old daughter. After her surgery, she had hers done in 2-steps, she was back to a normal teenager again. I won't lie she didn't handle having the bag that well. She coped with it. Her surgeries were 8 weeks apart. By the time she got used to it , it was time for her second surgery.

Yes, that was the hardest thing I had to do as a mom is buy my 15 year diapers to wear when we going to be out of the house for any amount of time.

I agree with byebyeuc, You know when it is time. My daughter was on remicade and it wasn't working. Was going to try humira and we were in the hospital in January of this year( 8th time within a year). They were going to start her humira the next day after her scope showed her colon getting worse. She talked with me and said mom I am tired of being sick and tired all the time. If this doesn't work, then I wasted another 3-4 months of not being able to do anything. Two weeks later she had her surgery. She is just 3months from having her take down
and is doing great. A couple of little bumps on the way. I can honestly tell you she does not regret having her surgery. She can't even remember how many times to goes to the bathroom anymore.


Good luck in your decison. I think I would call and see if I could get in sooner. I always started crying when I had to make another apt. for my daughter. Maybe that's why she always got in sooner. lol
Posted 7/5/2011 11:52 PM (GMT 0)
bostwis1,

I forgot to add in my previous post...just a little inspiration....I am a year out from my step 1 surgery. My takedown was in October. Yesterday I spent the entire day on the beach and only had to visit the restroom once. Then on the way home our car broke down and we had to sit another 2 hours on the side of the road waiting for our ride...still had no urge to go to the bathroom. I could have never done that in my UC days! Just wanted to share that with you so you know there is a light at the end of the tunnel in this very difficult time.

PS- You got it right- You can eat anything you want with a J pouch! (after you re-coop for a while of course!)
Posted 7/5/2011 11:55 PM (GMT 0)
I couldn't agree more with 'You know when it's time.'

I truly understand, like everyone on here does, of what you're going through. I found it exceedingly difficult during college to simply get on two buses to get to school, then to spend 12 hours at an institution when you're feeling horrible.

You always have options, and if you think you want to get rid of this disease then go for the surgery. I can't convince you to do so. This is your rant. No one here can convince you otherwise.

LDN, Imuran, SCD, worms, 5ASA's are options you can try. But when it gets to the point where you're considering surgery then perhaps you know it's the right time.

You're not giving up, you're taking your life back. I'll do the same thing when it's my time.


Hope everything goes well for you. :-)
Posted 7/5/2011 11:57 PM (GMT 0)

bostwis1 said...
I don't view surgery as "giving up." I view it as getting my life back. [ clip]

I salute you.

You tried the meds, suffered enough and made your decision. Good on you.

Good luck to you.
Posted 7/6/2011 1:43 AM (GMT 0)
Yeah, I would call back to try to get in sooner. Is Dr. Dietz your first choice? Just to let you know in advance some of the surgeons there will do the surgeries laproscopically if they are able to and others won't. One of the ladies on here had Dr. Tracy Hull who did her's laproscopically and she really liked her. She was one of my roomate's surgeons and she seemed like a very caring doctor.  I didn't opt to have it done laproscopically but if I was you age I might have went that route. If you go on the hospital's website and look at each doctor's bio a lot of times it will say if they do it laproscopically. I don't know which number you called to make the appointment but I would call the Dept. of Colorectal Surgery directly. There's no reason you should have to wait that long and then you'll probably have to wait some more after your consultation before you can get in for surgery. I think all of the surgeons at Cleveland Clinic are good or else they wouldn't be there. 
Posted 7/6/2011 1:55 AM (GMT 0)
I would call again - that's such a long time to wait.

Best of luck, and keep us posted!
Posted 7/6/2011 2:04 AM (GMT 0)
i am so glad to see you thinking of it as taking your life back! That's what it is.
If you are at a point where pred is all that is helping, then you need to call again and have them see you faster.
I agree with you about the diet changes, i never tried it, that to me seemed like giving up. I chose a permanent ileo, and i have had it for over 4 years and i am very happy with it!
i was 21 when i got sick and i wasted all my 20s being sick with UC, and miserable. Now i have to make up for it, which is a good excuse for eating lots of nachos and ice cream :D But seriously, i don't like to see people miss out on things when they don't have to.
I justread those links, the second is about a misdiagnosis, where the patient most likely has crohns, and surgery is not a cure for crohns.
The first seems to be about obstructions causing extra surgeries, or about the possible failure of a jpouch. Most people post surgery will have a blockage at some point, most won't need a surgery for it. It can happen and there can be other complications, everything has it's risks.
good luck with whatever you decide!
Posted 7/6/2011 2:07 AM (GMT 0)
I am the person scrap girl was referring to. I also answered you at j-pouch.org. I don't know if you saw this over there, but it gives good reasons not to wait. Call tomorrow and try to get in earlier. I don't know if Dr. Dietz will do it laproscopically, but if he doesn't and you are interested in that inwould do what scrap girl suggested. Good luck.

http://www.everydayhealth.com/colitis/webcasts/colitis-and-surgery-why-you-shouldnt-wait-too-long-transcript-1.aspx
Posted 7/6/2011 4:52 PM (GMT 0)
I love to read success stories. You truly do know when it's time for surgery. Dr. Dietz does do laproscopic. I called again and got put on their cancellation list. She said she would make sure to list me as "urgent", so hopefully someone cancels soon!
Posted 7/6/2011 5:23 PM (GMT 0)
Oh good news! Best wishes to you. If you have any questions, I would be more than happy to try to answer them for you. My email address is listed on my profile page :)
Posted 7/7/2011 12:28 AM (GMT 0)
Have you given rectal meds a thorough try? I am a firm believer in them.
Posted 7/7/2011 1:09 AM (GMT 0)
I'm glad you called back. Keep us posted!
Posted 7/7/2011 3:07 AM (GMT 0)
Yes, I have tried rectal meds. I can't retain them. I am currently trying Cortifoam, but I go to the bathroom so much the medicine probably doesn't have a chance to do it's job.
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