Should I be worried?

Happy you were mostly able to enjoy your trip, Plucky! But so sad that Humira doesn't seem to be working for you. I hope Stelara does the trick!

FlowersGal said...
Happy you were mostly able to enjoy your trip, Plucky! But so sad that Humira doesn't seem to be working for you. I hope Stelara does the trick!

Thanks FG! I'm encouraged about Stelara based on what the IBD Specialist said and also I have followed U B Tough's thread on the Crohn's board--she has been WAY sicker than me with multiple fistulas that won't heal and keep abscessing--and she said she felt better and symptoms basically disappeared immediately after her first infusion of Stelara (her fistulas are not healed yet though). I dare to hope.

There's really no reason to rush into surgery if you're not ready, you have options left to try, and it sounds like you're managing okay. I personally knew it was inevitable and I wanted to move on with life, but maybe you will find something that works for you - really, the fertility issue, and wanting more children makes surgery much more difficult to accept. I didn't want children, never have, so that was not a concern for me. If it were, I would have had to figure something out. What is the implication of ileo surgery on fertility? I know any abdominal surgery can make it more difficult, but I would think an ileo would have less impact on fertility compared to jpouch since it's less surgeries. Have you met with a surgeon and asked? Not saying you should have surgery or even consider it, but I am curious about fertility with an ileo. Surgery is very final - so take your time, exhaust the other options. What about doing an FT? or ask about IV steroids, or cyclosporine.

Gah! I have confirmed that I "glutened" myself last week with some of the stuff I ate--at least twice that I know of--I ate mochi and apparently there is wheat flour in the chewy outter layer! darn it I thought it was just rice flour but I should have confirmed that. No wonder I was having the bloating/gas/explosive/pain. Stupid stupid stupid.

Anyone have suggestions how to cleanse my gut of the gluten?

jsanch6couv said...
Oh Plucky, I read your story last night and I haven't stopped thinking about you since! You poor thing! I too am in LA and have struggled with having to drive long distances for a good GI. I've been flaring for a while, and my med "cocktail" was changed about a month ago. Like you, this flare has been different from others and a b***h to get a handle on. Unlike you, my kids are school age and I haven't had to struggle with the fun extra of a fistula. Hugs to you! Hoping you can find some healing soon!

Well howdy fellow LA'ian! Sorry to hear you're in a flare and also struggle to find a good GI--needle in a haystack round here, eh? I hope your new meds do the trick!

I actually spoke to my Humira ambassador yesterday and told her that the Humira isn't working and I'm going to quit--I'm SO disappointed because I've had no real side effects and I like working with the program/support people. It was scary to actually say "I'm quitting Humira because it's not working", like, I have officially *failed* Humira. Ouch. It stings. I was up super late looking at ostomy sites and pictures of hot girls with ostomies wearing cute clothes and bikinis, trying to get inspired about surgery. Still trying Stelara first, but if that doesn't work I need to quit wasting time and get on with it.

UPDATE:

Saw IBD Specialist and her NP (nurse practitioner) today. Was supposed to go on Friday but my car told me I had "low tire pressure" and I actually paid attention (sometimes I ignore my car's warnings) and as it turns out I had a nail in one of my tires so I had to reschedule to today.

Things discussed:

1. They said Stelara is a good option for me. Further, the NP informed me that Stelara has far less risks and side effects--I was not previously aware of Stelara's advantages over Humira and Remicade. No added risk of Lymphoma or a host of other complications (infections and such). Very cool. Tgey said tge infusion centers are "backed up" and it will probably be 2 weeks+ before I can get my initial infusion.

2. Meanwhile, they told me to stop taking my weekly Humira injections. That is scary even though I know they don't do much for me. Also I still have a Humira pen in the fridge and I hate to see it go to waste. Any ideas on what to do with the pen?

3. They told me I won't need to take 6MP with Stelara because there is only a small chance of developing antibodies and at 50mg my dose would need to triple. I'm not tolerating the 6MP well--I've gained 8lbs since I started it almost 3 weeks ago and I know it's the 6MP making me retain water. It's also making me anxious, which I noticed right from the start and it's only gotten worse. I have occassional tremors and muscle spasms/cramps. It just makes me feel like crap. But it's helping. My Colitis symptoms are better and I saw my blood test results from last week and everything is close to "normal"! IBD Specialist said it can't be doing anything for me because it takes at least several weeks. She also said it *must* be the prednisone causing my weight gain because 6MP "doesn't do that". And yet, I lost a bunch of weight at 60mg prednisone and maintained most of that weight loss *right up until I started 6MP* and *nothing* else changed--I have been eating the same. I hate it when doctors believe statistics over my *actual real-life experience*. Despite her skepticism and assertion that the 6MP couldn't possibly be healing me nor making me fat, IBD Specialist said I'm welcome to continue taking it until 3 weeks after my first Stelara infusion. Because she knows I'm terrified of getting sick again. And I appreciate her taking my feelings into consideration.

4. Speaking of feelings... I dropped from 40mg prednisone to 37.5mg last week, and I felt like crap. But then I dropped from 37.5mg to 35mg today and I feel fine. IBD Specialist is totally fine with me weaning slowly and at my own pace--this is so refreshing because my previous GI constantly lectured me about getting off the prednisone with no regard for how sick I was or how it made me feel. He acted like it was a recreational drug that I was abusing. Then I weaned too fast, ended up hospitalized on IV steroids and now I'm all flucked up. So I really appreciate IBD Specialist respecting and understanding the need to wean slowly and cautiously. She actually has a more conservative plan than I had, which is to wean 2.5mg per week until I reach 30mg and then *hold* at 30mg for at least 3 weeks post-initial Stelara infusion. I let out an audible sigh of relief.

5. I still have my perianal fistula and it needs to be dealt with as soon as possible, but I'm still too inflamed to be messing with a fistulotomy. So we are "leaving well enough alone" for now.

6. Speaking of surgery, they told me their K-pouch surgeon won't do a K-pouch on a Crohn's patient. They won't do a J-pouch either. Too many risks of complications. So it's end ileostomy or nothing. I told them I am coming to terms with the idea of an ileostomy and realize it's my best shot at a "normal" life without complications of disease/surgery/meds. They think the surgery is a great option for me, because we all know it's in the cards at some point. I told them I'm sticking with my original plan--to try Stelara and if it fails, abandon drug therapy and have the surgery. I'm not sure I mean that, but I keep saying it in hopes that I will start believing it and follow through when the time comes.

So I'm quitting Humira for sure and considering quitting 6MP too, but probably am too "chicken" to quit the 6MP until the Stelara takes effect. Except I'm also vain and this weight gain is flucking with my already-fragile self esteem, so maybe I will quit... nah probably not... (infinity)

FYI, I didn't gain any weight on max doses of pred (or any other side effects) but once I started tapering I started seeing the weight gain and side effects. Worst at 20mg for me.

Glad you're moving forward to Stelara. Hopefully it will help you get to remission! Out of curiosity, is the IBD specialist in NOLA?

I always gained weight on pred, it took a few weeks before i noticed, but it always happened. Even if my UC wasn't 100%, though, I never had a situation where my UC didn't heal up pretty quick with pred. I have had it where it got nasty while tapering and I continued to carry the pred weight regardless. I just looked like hell the last few years living with UC. it was as if my body wasn't it's normal shape/size. Very awkward and very difficult to live feeling like your body is deteriorating. I hope the stelara works well for you Plucky. It's really hard with a complicated diagnosis ad fistula. Surgery can still provide a great outcome, but it feels like the risk is scarier, like what if it doesn't "cure" you? EvaLou had fistula, she was questionable for Crohn's and had an end ileo and she love life now. Do you remember her? Her colon path came back UC after surgery, but she wasn't a candidate for jpouch because of the fistula - but the ileo doesn't hold her back one bit. Anything is better than diapers or pulling over to go on the side of the road...

You should look her up. You will see her story, she struggled for SO long. I chat with her all the time off of HW, she's an amazing person. She can definitely help you with questions if you want to know about ileo or fistula & surgery. She is very laid-back and adapts well, she adapted well to living with the restrictions of having UC - like we all do at a certain point, but now we are past it and realize it was a loss of time and energy. All that fighting when we could have fixed the problem all along.

No, in BR. Huge practice, over 20 docs and NPs, all GI's. Keep us posted on Stelara!

That's fantastic. I am so happy you're feeling well and feeling positive about stelara. Best of luck for your infusion in a few days. 3-4x a day isn't too bad regardless. I'd take that if it's my only symptom! but with tenesmus and blood, you know there's more to it, and that's what's upsetting.

Was this your first stelara infusion? I can't remember. I know a couple of others posted that stelara put them in remission after they'd failed everything else. Hope it does for you too!