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So, I did something really stupid...what should I do now?

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Ulcerative Colitis
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Posted 8/24/2010 4:34 AM (GMT 0)
Here's my back story:

I was diagnosed with UC 10+ years ago.  I was around 19-20 years of age.  I had never heard of UC and my doctor didn't explain anything about it to me, he just shoved a prescription to me.  My doctor didn't seem concerned about it...so I wasn't either.  I took the medicine sporadically and saw him every now and then when it hurt.  According to further colonoscopies, it was getting progressively worse, but still I didn't take it seriously...mostly because he didn't seem to think it was a big deal.

Looking back now, I know that this is my fault and I needed to be proactive about my health. 

Last year, my stomach hurt progressively more.  I called my doctor's office and tried to make an appointment.  However, apparently there was a $10 charge that I never paid, and thus the doctor's office wouldn't let me see him or any of the other doctors at the practice again.  I finally found a new group of gastrointerologists and made an appointment.

My new doctor is near my age and a woman.  I don't feel embarrassed to discuss my symptoms (as I did with the other doctor).

I saw her in January of this year.  She prescribed 4 pills of Lialda a day.  I started taking them immediately and scheduled a colonoscopy for March.  I think the pills had started to help.  When I got the results back from the procedure, she said she didn't even think I had UC, just proticis (spelling?) as the inflammation was only near the end of my colon near my anus.

I couldn't understand this.  I know UC can't be cured, so I didn't understand how I had so much of my colon involved when I went to the other doctor and barely anything now.  She said it was probably because of the Lialda I was taking.  I wasn't buying it.  She wanted me to get a follow-up colonoscopy because she had biopsied a normal area and it came back having a polyp.

At first, I put off having the second colonoscopy because I had to pay so much out of pocket for the 1st one.  My deductible is $2500, and my insurance only paid $42 of it.  Then I realized, that since I had met my deductible, I would only have to pay 20% of the next one.

So here's where I did something stupid.

I stopped taking the Lialda since I knew I would be having a new colonoscopy.  I was having intense pain before I saw this new doctor and she couldn't find a reason for it with the first test.  I wanted to see what would happen...would she find anything different from the first test?

It backfired.  My stomach pain and bathroom habits increased. 

I finally called to have my 2nd colonoscopy much earlier with a different doctor within the practice.  I had it last Tuesday (as opposed to the appt. I had on 9-16)

He took out several more polyps (how fast do they grow?!!!).  He also said he wasn't sure I had ulcerative colitis...he thought it might be crohn's.

I just had my blood drawn today for crohn's tests.

My stomach pain is the worst it has ever been.  Generally (within the last several months) I have a BM about 7-10 times a day.  Within the last several days, I feel the intense need to have a BM every ten minutes or so, but only bloody mucous comes out.

I have been missing work more frequently. 

On Wednesday, I have to have major dental work performed, so I was given penicillin to take for three days prior.  It has wreaked havoc on my stomach. 

So, my question is this...I have an appointment with my doctor in a few weeks to discuss my colonoscopy results and blood work.  Should I start taking the Lialda again.  I know it takes a while to work...and what if I have crohn's...isn't that a whole different set of drugs?

It's my own fault...I am well aware of this...but I am sooo tired of feeling sick all of the time.

If you have taken the time to read this whole post....THANK YOU!

Posted 8/24/2010 4:47 AM (GMT 0)
Geez dude, you really didn't do yourself any favours here did you.  If the doctor has prescribed you Lialda, I would say take it.  It's purpose is to keep down inflammation (like a number of drugs we all take) and it sounds like your colon isn't in great shape at the moment.  Three weeks can be a long time not to take any meds at this stage.  Unless you can get in for a consult with your current doctors to discuss meds, take the Lialda in hopes of easing your current symptoms and making things bearable in the mean time.
Posted 8/24/2010 12:31 PM (GMT 0)
I would take the Lialda for now and just try to be patient for the next three weeks.  Yes I read the whole post.  Your welcome.  UC can be mysterious in how it works.  I went from pan colitis (the whole colon) to half the colon being effected the whole colon being effected.  I had approximately 6 different GI docs (due to moving or due to them being skilless) over the course of 20 years.  I have had people tell me my colitis was very mild.  When a different doc looked at the same pictures he said my colites was horrible.  I had one tell me my colitis had gotten worse and then a few months later I had a GI doc tell she wasn't even sure I had UC in the first place.  What I am trying to get at is that what you experienced is quite common.  If you read enough threads here you will find this out to be true. 

What works for me is to be your own advocate.  Do your own research and be persistent.  Be polite, but be firm and make sure you a GI doc that you trust professionally as well as personally.  When you have a good rapport you can discuss anything and everything is on the table.  You have to trust your gut and your feelings.  This is a life long illness, you have to find a life long doc.

I would take the Lialda for now, it certainly won't hurt.  I would also definitely follow up with another colonscopy and biopsy when appropriate to make the final diagnosis.  What ever you do follow instructions otherwise don't go to them for advice in the first place.

MyUC

Posted 8/24/2010 12:53 PM (GMT 0)
From here on out you should always take your maintenance meds whether you feel good or not, and whether you have inflammation or not. Maintenance meds are designed to keep inflammation at bay. UC is very unpredictable and you could do yourself a huge favor by learning more about it and how to manage it. It's also critical that you share ALL of your symptoms with your GI. The best way they can help you is by knowing your symptoms. They can't tell how you are doing by looking at you. If you are uncomfortable with speaking candidly with your current GI, then go get a new one.

Sue
Posted 8/24/2010 1:04 PM (GMT 0)
A few bits of information that might make this seem more clear: For many of us UC flares starting at the rectum and spreads upward and so, for many of us it heals in the opposite direction. IMHO it would make total sense that after a few months on Lialda your inflammation would be limited to the rectum and anus. Many UCers use both an oral and a rectal mesalamine preparation to get all of the inflammation. If I were you, I'd restart the lialda and give the doctor a call and see if you can get an Rx for either Canasa (Mesalamine Suppository) Or Rowasa (Mesalamine Retention Enema - there is a generic for this one). Since you have to wait a few weeks to see your doctor anyway, might as well try the both ends Mesalamine approach! Good luck! I hope you feel better! :o)
Posted 8/24/2010 1:24 PM (GMT 0)
Aw, Teach, tsk, tsk.
It's horrible when we have to risk our health to save money - I'm so sorry.
I'm really glad you have a GI you can work with - that helps a lot.

I would take the Lialda again, since it did seem to help in the past. And then stay on them, because I've heard they don't work as well when we stop and restart all the time!
If you could try the enemas, that would be good too...
I would proceed as if it's UC until you know differently. If these meds help, good - whatever the disease is, you don't want to get sicker and sicker!
There is some overlap between UC and Crohn's meds, but I don't know a lot about that. I do know a friend of mine with Crohn's takes an oral 5-ASA.
The biopsies should be a key to the Crohn's/UC question, also - UC affects the colon lining, and Crohn's affects the whole thickness of the tissue. There's another thread on this at the moment, so, maybe check that out.
We all make mistakes in life.... the trick is to learn from them! So - don't beat yourself up, but be active in your own care, and - keep us posted!
Posted 8/24/2010 1:36 PM (GMT 0)
Take the Lialda. It is also used to treat crohns. It was working, right?

I still want to hear what happened with the nurse who caused bruises?!
Posted 8/24/2010 1:38 PM (GMT 0)
teachtoreach,

Here's my advice to you,

to increase my energy levels, I stopped consuming foods with sugars and I started taking certain vitamins and minerals like B-Complex, B12, Copper, Zinc, Magnesium, etc. (you might want to see a nutritionist to find out what minerals your body is low in, rather than taking a guess) and going to bed earlier. Light excercise is also extremely important at restoring energy levels and removing toxins.

I do not drink milk, or eat cookies, or drink sodas/fruit juices, no junk food, etc....By following this strict diet, I was able to come off of Remicade and my colon completely healed itself. I'm not saying it will work for you, but why not give it a try and see?

ps.
If you're going to have dental work done, don't let them use silver fillings.

NBT
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