New to HealingWell, Forums, and UC but NEED HELP or maybe just some sanity!

Hi,
as said in the subject I am new to many things. One being diagnosed with moderate to severe UC in Sep 2008. I am 28 female, with 1 child, and was Married in Oct 2009. I have tried many different drug therapies and I am finding they are effective for about 6 months and then they are no longer effective. I was also diagnosed by family practitioner as borderline anemic.

I have not gotten into a strict low residue diet yet because I am unsure what that really means and how to maintain it.
I have tried pills, steroids, and now on Remicade. (for those of you who are on this there is a rebate program to help with the costs - google RemiStart) I am still spending thousands of out of pocket money (enrolled in Federal Health Care program) to pay for these treatments that I started back in Sept 2009. And now its as if I haven't taken anything. I am flaring all the time, the pain is so bad that its causing me to throw up most days. Which has caused me to learn what foods not to eat as they are terrible the second time around.

I have discussed this with my doctor and he seems reluctant to hear me out as he has all these other options he wants to try but are extremely costly to me. Category D drugs, more infusions, more steroids, probiotics, more tests for C Diff which has been done 4 times and each time come back negative. I have suggested things that I have read about such as endometriosis, Anthrax vaccination (I am in the military), and more natural herbs and he doesn't seem to care only refers me to other doctors (OBGYN, Military Facilities, and herbalists). Now, I have had 2 scopes and now about to be scheduled for a 3rd.

I am so frustrated I really wish to know if anyone else out there is having the same run into the wall feeling like this? I am on my 3rd doctor since 2008 because they don't seem to listen when i tell them the drug stops working but the next doctor can clearly see that it has. I don't want to go through this all over again with another doctor to be scoped, re-diagnosed, and then only to hit a wall again in 6 months.

Drug list / My Reactions after 6+ months

A) Lialda (6 pills a day) no remission, caused terrible scaring lesions all over my legs
B) prednisone 60 mg a day short term remission, caused my heart to jump and then drowsiness for hours
C) Probiotic - doesn't seem to help except keep gas down
D) Antibotic - helped when i had an infection
E) Calcium Supplements - helps but not enough to put me in remission
F) Remicade Infusions (1 every 8 weeks) worked fine from Sept to Jan then had bad reaction and had to stop infusion and get benadryl and steroid shots now I get them as premeds. I have flat veins so it also takes 2 to 3 sticks to get an IV and I'm black and Blue for weeks.


Please help me, anyone?!? Thanks for listening - "Angry Amazon"

Thank you both for your encouraging and quick replies.
I now will have a little more sensible ideas to take to my doctor tomorrow other than "you're fired"!

Remicade was working up until January's infusion. I went a few weeks and did not have any issues then would flare and go a few weeks and be fine. But, since I just had another infusion last week, I've been flaring everyday. So it seems its worn off or my body has ignored it. One thing I wanted to also note was in January the day after my infusion i had pain in my joints for about a week. The first day being a Tuesday I had pain in my left knee, then Weds it was no longer there but in my lower back, by Thursday I could barely sit or drive because my hips were in so much pain Fri, Sat, and Sunday i had pain in both my shoulder blades. Thankfully this past week has been fine, just dealing with heavy sinus allergy thanks to Maryland's High Pollen.

It just never ceases to amaze me how the body can pick and choose what it wants to do. Unlike a computer program for example which any symptom can be analyzed and fixed with logic. The body on the other hand will just keep you guessing.

The scariest part about this for me is my job. As stated above, I'm military... I am currently being held on a "Medical Profile/Waiver" and that means I'm useless to the military. If I go under surgery and have a bag installed I will lose my job because I cannot go overseas. I am already at risk for that because of the infusion every 8 weeks and more so if I can't get my weight down (I'm 5'10 @ steady 220 for the past 5 yrs, the military would like me to be closer to 175-190). Of course my doctor said to see a dietician when I asked for his expertise and followed that statement with he's not too concerned with me losing weight right now until I go into full remission.
But that aside, the steroids are making it hard for me to lose any weight. Is there any suggestions to this?

Thanks again for your insight.
AA

Fruitgirl I <3 you lol but seriously, Thank you because I didn't understand what anyone meant by surgery. My only experience of this was from my grandmother who had an external bag and I helped her clean it and such - nasty experience. I was dreading that option but from the way you put it internal doesn't sound as bad. I will DEFINITELY be asking my Doc about Humira tomorrow first though. Self injected sounds humiliating and embarrassing but if i works and keeps working that's better than the pain.


edited: wait... is Humira a rectal drug or needle?

Post Edited (AngryAmazon) : 4/19/2010 5:05:41 PM (GMT-6)

Amazon

UC is not any fun and impossible to get a handle on. We all seem to be different which is why I think doctors just keep trying different drugs hoping something works.
Like you drugs haven't done much for me, except Rowasa enemas and steroids both helped stop my bleeding but only as long as they were used.
I'd like to make an alternate suggestion before you head to surgery: an elimination diet to see if foods are causing some of your problems.
I've tried every diet in the world over the years but this last time I started by eliminating gluten (bread products and other) and my bleeding stopped within days. There are more people like me that a gluten-free diet has helped.

I also have eliminated most dairy, fruits and juices, caffeine and chocolate.
The Specific Carbohydrate Diet is what I adhere to (with some changes just for my gut). It's very healthy and similar to the Atkins and Paleo Diet. You will lose weight but be healthy. It's not a fad diet.

Just give it a thought. My feeling was I had nothing to lose. No it's not easy in the beginning but neither is running to the toilet 20 times a day. I don't do that any more and life is so much better.

Best wishes.
(imagardener, I deleted a post of yours where the only thing written was "dupe post" I'm guessing that you noticed this post was showing up twice, edited it to say that, and I figured I'd just delete it to lessen any confusion. For furture reference, you should be able to delete your own posts, by clicking on the red X next to the pencil in the upper right corner. --fruitgirl)

thx-ima

Thanks everyone, some very good things for me to try when i thought i was at the end of my rope. I had no idea all these things were even out there for UC. Needles sounds scary to me, but I will still ask my doc about it hopefully he can put my mind at ease and get me back into remission.

I'll keep you all informed and keep checking for any more great ideas like i found today. God bless you all.

Hey Peety,

I was scoped in Sep 2008 for first diagnosis, then I switched doc's and was scoped in Jul 2009 to confirm diagnosis (the first doc was useless according to my current doc) he wants to scope me again to see if I am getting better or if its spreading or what not. I don't think its necessary but he doesn't listen to me. Just like testing me for C-diff just about every other time I visit him, when I've never been hospitalized. ( I read that's the most likely place to contract that).

I guess the more I read about this in others threads the more I'm learning I know practically nothing about this disease. I thought it was majorly like cancer: either A) you're lucky enough to get into remission and it was unlikely for you to come out of it but possible or B) you fought to be in remission the rest of your life. I thought I was lucky to finally find something like Pred to put me into remission and then Remicade seemed to confirm it and make it stay there. Now that its stopped working I figured I would have to move on to something else and stop wasting time and money on Remicade and keep fighting to find that remission again.

I suppose that would make sense to keep up on other drugs for supplements when I flare. Its just a new concept to me, as is all of this.

Thanks for your thoughts!
AA

Have you tried the specific carbohydrate diet? It didn't help me but a lot of people have luck with it. I think you're doing the right thing by starting the prednisone and waiting on Humira. The options do get limited if you can't tolerate 5ASAs and you've already tried the majority of conventional treatments, your choices become less and less. I have heard of people having luck with LDN or Flagyl. Have you had stool tests?