Remicade Reprieve

The test results are in. Nothing really scary on the ct scan. Yay! Even better, we seem to have some room to play with upping the Imuran dosage instead of starting right away on Remicade. So, we will very, very, very cautiously up it with lots of blood tests.

Well...

First, do you wonder if these docs made use of some samples after the indigestion?

Second, doctor today was fast! (everyone was in a hurry for lunch...except me...I just wanted to get back to work) Unfortunately, not good. Some new fancy ct scan on Friday. She also said the F word...yeah fistula. So, no work on Friday. Sigh. Also...Remicade started ASAP. sigh. Lots of sighing. Not good. But wait...my fasting blood sugar was fine! Yay! Blood pressure unremarkable. Pulse not horrid. I didn't jump off the table when she prodded my belly, but yeah it still hurt. Anyone know why she does this leg thing every time too? She leans over, presses her hands on both of my thighs and seems to meditate. Sometimes this takes her a lonnnnnng time. Especially lately. Not just the ankle squeeze thing they do. (she does that too.) Crohn's rots.

Gold Standard

Decision Resources, Inc., one of the world's leading research and advisory firms focusing on pharmaceutical and healthcare issues, finds that Abbott Laboratories' Humira will replace Centocor's Remicade as the clinical gold standard for the treatment of Crohn's disease by 2010. According to the new report entitled Humira Emerges as the Leading Therapy: A Crohn's Disease Study, Humira outperforms Remicade in efficacy, safety, and convenience.

"Data from Phase III clinical trails suggest that Humira more effectively maintains remission and clinical response than Remicade," said Cynthia Mundy, Ph.D., therapeutic area director at Decision Resources. "Humira's less frequent and less severe hypersensitivity reactions, lower rate of minor side effects, and subcutaneous administration also are improvements over Remicade."

Are you buying it? Convenience maybe, but the rest? I am not so sure. But, then again, I am not so sure about the Remicade either. Maybe I am just naturally suspicious when the words Gold Standard are used with this cruddy disease.

Camera Update

I have been meaning to get here with the newest update on the camera endoscopy. My doctor called Wednesday. She first spoke with my partner since I was at work and she called me at home. She gets high marks in my book for actually speaking to my partner, especially at length. Then she called me at work.

We spoke for quite a bit. Camera endoscopy looked good as far as all that small bowel stuff. She was also reassured about the mystery spot. She has decided that at this point surgery isn't necessary to remove the mystery spot. YAY!

However, my stomach looked to quote her "bumpy and inflamed" She says the camera isn't such a hot way to look at stomachs so she wants to do a regular upper endoscopy.

Since I have been doing relatively well over the past few weeks she also has decided to hold off on the remicade for as long as we can. Another yay for that. I think she also perhaps concerned about the hives and how remicade and hives won't mix well.

All and all, pretty good news. Upper endoscopy is not my favorite idea of how to spend a day but it could well be worse.

Snake Oil

Friday during a trip to the most inane drugstore in the country, I ran across (while pondering all the other over the counter things that might conceivably make the crohns feel better) a box with Crohn's and Colitis on the front in big letters. What was this? I surely was no stranger to this aisle. Digestive Advantage for Crohns and Colitis (Go ahead click the link and peek, looks like they have free samples) The box claims it relieves diarrhea, constipation, pain, and bloating. Woo hoo. It quickly landed in my cart.

Yeah I know. Probably no good or overpriced packaging for something I could get unlabeled for less. Still...it might work right? I still can hang on to the idea that the all wise GI docs just missed this in order to use the Imuran/azathioprine and I should give it a try before the Remicade. Anyone else tried this?


digestive advantage,
colitis,
ulcerative colitis, tummy troubles, imuran, Crohn's Disease, Remicade

ARG!

I was feeling bad because I think I only whine here despite really not being that bad off comparatively on the tummy trouble scale. So I say something nice. What happens? TUMMY TROUBLES. Painful nasty yucky disgusting tummy troubles.

colitis, ulcerative colitis, tummy troubles, imuran, Crohn's Disease, remicade

Not doing too Bad

The nausea issues seem to have passed for a few days. YAYYYYYYYY. Still haven't picked up the new script for the nausea meds.

Unfortunately I seem to have gone from a pattern of predictable(for me) bathroom trips to somewhat less foreseeable ones. Annoying.

I am thinking I should go back and read up on Crohns and diet and so on. I have to confess I skipped a lot of that info because it didn't apply to both Crohns and Ulcerative Colitis. I used to be annoyed that there was soooooooo much on Crohns and not much on UC.

colitis, ulcerative colitis, tummy troubles, imuran, Crohn's Disease, remicade

Appointment Update

Yesterday was the CT scan update appt. No real news from the ct scan. Dr was confused as to why I hadn't already done the capsule endoscopy. Uh hello, you said to wait until you got the ct stuff back. I got to see the color pictures of the mystery bump.

Capsule endoscopy has to get approved by insurance which make take a month and the office folk said they are scheduling them a month out right now. So probably two months before that.

She in her intense gi doctor way said she was concerned the mystery bump was an encapsulated carcinoid tumor but that was rare. Sort of her way of saying she is alarmed but I shouldn't be I think. Surgery chat was interesting in a vague analytical way. As stated earlier, the world famous G.I. doc says it can be done with colonoscopy without perforation. She isn't so sure. In any case it would take both. If I do perforate or we go surgically with this in the first place, it may be able to be done laparascopically butttttt appendectomy scarring may prove to make that impossible as well. So rather than answer all the work questions like how long do you need off for this surgery, I have no answers for them. "Could be just a day for the colonoscopy. Could be a week for the laparascopy. Could be much longer for full abdominal surgery.

I forgot to ask for pain med refills. I also didn't cancel the appt scheduled for the 11th. I need to do both today.

I really regretted the pain med ommission yesterday as I had serious, serious gut wrenching (giggle, nice pun) pain all day that progressively got worse. Still owie today.

colitis, ulcerative colitis, tummy troubles, imuran, Crohn's Disease, remicade

I Want My UC Back.

Ok, I am going to whine just because I can. Let me say up front I know that people are trying to be comforting/encouraging. I appreciate it. I do.
But people who say "Oh my 3rd cousin twice removed", "the son of the guy my husband works with", "my great aunt" had crohns/had surgery/never had another problem are driving me crazy. Yeah, well that is swell. I hope I will too. This didn't happen much with Ulcerative Colitis.

Added to all of this...I have become the topic of department gossip. Let me just say these people are going out of their way to be nice and accomodating to me. They have been sorting out how to deal with the fact I have no sick leave left and obviously need my insurance and a job. I really, really appreciate it.

On the other hand, I have spent the entire time I have worked here trying not to be the topic of conversation. I don't want to be chatted about because I am the poor, sick girl. I don't want to be chatted about because I have the weird kids. I don't want to be chatted about because I am the famous ex-wife. I don't want to be chatted about because I am the lesbian. I don't care if anyone knows any or all of the above. (ok, the poor sick girl thing I would be happy to hide) I am proud of my partner and our children. Want to meet them? Want to chat with me about them? Want me to ramble about them? They get dropped into daily conversation. Hell, I am even generally proud of my ex husband. (I should be, I worked my ass off to get him where he is today.) Don't gossip about my tummy troubles geez..

colitis, ulcerative colitis, tummy troubles, imuran, Crohn's Disease, remicade

Doctor's Appointment

Mystery thing in my colon has grown since my last colonoscopy. They want to do surgery to remove.

Biopsies of disease area are consistent with trohnd, crohts, ckohbs, glotns (my personal favorite) ok, those are reconstructed words that mean, yes, I have not Ulcerative Colitis but Crohn's colitis.

CT scan Thursday with what sounds like close to the prep from hell. Anything they start by telling you "Buy hawaiian punch or kool aid and make it as sweet as you can" can not possibly be good. And that is STEP 2 after the appetizing looking brown white stuff I have to drink 7:30 the night before.(Which brought me to wonder if that is what they use to make the "money shots" in those movies...you know the sort). They were kind enough to give me a special souvenier sippy cup for the prep though. Insulated and everything. Woo hoo. My first Crohn's souvenier.

Then another doctor appointment next Thursday. Followed by the capsule endoscopy. Followed by the surgery. Followed by remicade infusions. At least that is the preliminary plan.

Wearable Meds? FDA Remicade?

This seems like the perfect answer for tummy troubled folk and their meds...wear them. Hmmm...but why not just go with a patch? (and just why aren't tummy troubled things available via patch or are they?

"Re Midi clothes will be made from specially developed fabrics that release a controlled dose of a complementary or homeopathic medicine into your bloodstream through your skin while you wear it."

BTW-Rumor is that the FDA approved remicade for use with ulcerative colitis. I wonder if this means my doc will suddenly get happy about it.

Third Follow Up

I went to the doc yesterday. I am very growly about the whole thing. The one that has been assigned as my regular gi doc is out of town, so I saw a different doc in the practice. Which is fine, I don't particularly like my regular doc and this is one that was decent to me when I was in the hospital.

So, he goes through, wants to put me back on prednisone, I explained that I didn't do much better on that than I am now off of it and the side effects of the pred sucked. Wants me to try colazol again, which I had serious almost going to the hospital again reaction to 2 1/2 months ago when they tried it last. Then he decides to up my 6-mp again which is what the regular doc discussed last time I was there and then doing a test in 2 weeks to see if I have therapeutic levels. No problem.

Then during the examination he says that I am running out of options for treatment and that the next step would be remicade or surgery. He didn't seem all that fond of remicade. I have my own questions there...whether insurance will cover, what it involves, etc. He says "If this is affecting your quality of life, then surgery seems like the way to go" Uh well, DUH its affecting my quality of life, I am in the bathroom all the time and in a lot of pain, exhausted much of the time and can't do nearly the things I should be able to do.

After that...we sit back down and he is prepping to write the scripts and I ask about pain meds. I explain that the Tylenol 3 isn't working anymore (which I had said at the beginning of the appt...that it worked for a couple weeks and then stopped so I stopped using it.) I got this LONGGGGGGGGGG lecture about narcotic usage and how I should avoid it. He made me feel like a junkie even though I really am loathe to take any medication esp the pain meds unless I am really miserable. I hated the whole thing. It is hard for me to go in and ask for meds, particularly pain meds in the first place and to be treated like that made it even worse.

He also wants to do another colonoscopy but wants my reg gi doc to order it and such. So I was supposed to have an appt in 4 weeks, they couldn't schedule me until September. Grrr. I don't have time in September for such things. The blood test can't be done by the lab that the insurance covers so I have to go to another lab. (lets hope insurance will cover it...)

I came home ranting about how I wasn't going back. I really don't want to. I am tired of all of this. Anyone got a good snake oil treatment that can't possibly work any worse than all that I have taken so far? Yeah, yeah I know...I just wish something would work without having to deal with the doctors.