New Plan of Attack?

[Jessica]

Hey, everyone. I seem to be in a predicament, and I'm not sure if I'm in my right mind for it. Maybe I'm just worrying about it too much. I'm still educating myself about treatment options, so I'm hoping that this thread could help point me in the right direction.

I've had Crohn's for 2.5 yrs. I've had three colonoscopies. No surgeries, abscesses, fistulas, vitamin deficiencies.

I've been on Asacol for the entire 2.5 yrs. Ranging dosages, but almost always at the max of 3,600mg a day. I've been on Entocort for 2 yrs. Ranging dosages, but almost always at the max of 9mg a day. I've been on Imodium for the entire 2.5 yrs. Ranging dosages, but almost always at 1 pill each night.

Right now, I am at the point where I feel the Entocort is beginning to wear off. For a couple months at the beginning of this year was the first time I felt like I was actually in remission. It didn't last long, but it was nice. Plus taking a steroid for this long straight kind of scares me. And having to take the Imodium every night tells me that my other meds aren't enough. Oh, and today I just found out about steroid indused diabetes. My mother is hypoglycemic and her father has diabetes. Ya think someone would've told me before?!?

I just feel like I'm always on the edge of a flare. So I'm stuck between remission and flaring. I might only go to the bathroom 2-3x a day. But I feel like I have to 10x or more. So, I believe I should change meds. I just don't know if I should try an immunosuppresent or just skip to the biologics. I've been looking into Cimzia, and it seems great!

I think I'm just frustrated. I might not be in a full blown flare, but I swear I might as well be. Pains still come and go. Bathroom trips are almost the same. UGH!

I don't know what to expect from posting this. I guess I just want to know that I'm not crazy in thinking that this shouldn't be a norm for me. Ugh.

Thanks for reading the rant either way <3

 

[Nica]

Jessica,

I am not a doctor, so these are just my thoughts as someone who has had crohns for 12 years.

How is your bloodwork? Do you have an elevated white count? Getting extra-intestinal side effects? Energy levels? Has your GI mentioned any of the other options? I think you should seriously look at how you are functioning before changing your meds at all.. It literally can be like opening Pandoras box IMO. It was for me.

I was about 3 years into Crohns when I was put on immuran. I remember being EXCITED to take it, thinking something might fix me. I was in the hospital 2 days later from Immuran and it started the chain of events that leads to my med list you see today.

I have found that a new "normal" exists for me. I want to say Clinical Remission is a CDAI of under 150. That means we are still suffering usually. Try tracking your CDAI index for a few weeks and see where you are at, keeping in mind that 150 is the target for the docs.. (no it is NOT my target or I think anyone elses )



Remember once you start the immunosupprsants and biologics you are running to some nasty possible side effects. I saw you are concerned with taking Entocort for such a long time but, that is one of the safest drugs for Crohns out there (according to my GI) Dmards (immuran methotrexate) both have serious side effects, one gave me pancreantitis and one makes me flu like, dizzy and generally I feel like crap (so not much better than suffering with non flared crohns IMO). The biologics are known to be dangerous meds, if you wonder how dangerous just go to the website and read the warnings. Plus with the biologics you run the risk of developing anti-bodies.

I noticed you are taking Echinacea, I know for a very long time I was told to stay away from it as it boosts your immune system.

Just weigh out all the options and dont jump on the harsher med train without really seeing what they can do for you.
.

 

[Entchen]

Dear Jessica: I can hear your frustration and feel so bad that you are in this situation -- and have been for so long. No info or advice, just support (and a hug, for what it's worth!). Hang in there; I hope that you will soon find a solution that works for you.

Nica, I appreciated reading your entry; it reflects a question that my mom and I have been discussing recently.

 

[Nica]

It's a rock and a hard place I know. If I can help you please feel free to PM me.

 

[Jessica]

Nica - I had my blood done about a month ago. WBC's were within limits. Extra-intestinal are only headaches, arthris, mouth sores, eye twitching, leg numbness, and some nail & hair changes.

I know that Entocort is one of the safest choices for Crohnies out there. But I don't want to become steroid dependant or have steroid induced diabetes (I have sugar issues already it seems, plus it runs in my family). The CADI thing I'll have to look into more. Honestly, I think this is only the second time I've heard about it. My doc has never mentioned it.

I just hate feeling like I'm on the edge all the time. It certainly can't mean that these meds are working the best that anything can for me. And having to take an Imodium EVERY day can't mean that the other meds are working either.

I don't like taking all these pills. Not this young (only 26). And I don't like that even taking so many doesn't do the trick. If I feel like I have to go to the bathroom this much, something isn't working anymore. I've had my high points in remission. This isn't it. Something stopped being so effective. I just don't want to wait until I have a full flare and have to try to stop that.

I'd be fine taking the pills if I didn't have to make the trips to the bathroom so much. Like before, I took all of these same pills and was fine. I went on rollercoasters with no problems. But missing two dosages and having a week long reaction is rediculous to me.

The Echinacea I've noticed doesn't mess with my Crohn's. I took a bottle and actually felt better. Not as run down. I buy my supplements all at once. So once I run out of these bottles, I'll get more on my next pill run. One one run, off the next. That way not too much.


Kelly - Thanks for the support, and hugs right back at ya! <3


Either way, I have my sig. other going with me to the docs next Monday. This way he can read into things I'm not. Or remember to tell the doc things that I don't. I always manage to forget to tell them about my spasams. Eh. We'll see how things go.

If not immunosuppresants or biologics, maybe there's something else that could work better than the Asacol/Entocort mix he's had me on. There has to be something else that will work as well as this used to on me.

Sorry if the spelling and focus on this is wrong. I'm still working while I type this. My thoughts aren't as well thought out as usual today. Had a spell this morning.

Thanks everyone! <3 And Nica <3

 

[Nica]

I really understand where you are coming from. It seems like a waste to take 10000 pills and still be in the bathroom all the time.

Entocort is supposed to stay in your guts (I don't know that I believe that tho!) and minimal systemic reactions with it.

The meds I can think of is pentasa which is basically asacol with a dif name. Some tests are out that talk about an antibiotic used for travelers d that is working for crohns. There is also LDN, if your doc will prescribe it.

I was only in my mid 20ies when I was diagnosed as well, Its a hard road! I wish I could help you more.

The CDAI is something I had to look into when I was going to do some clinical trials, there is a website with a chart you fill in to see where you are at for the week and it pops out a number. My GI asks the same questions basically when I go into the office to see how I am doing. I use it as a tool to see where my disease is at when I am getting into a flare up.

For bowel spasms they can give you a bowel muscle relaxer ( I forgot the name its been awhile since I was on it) For lots of Bathroom trips they can prescribe lomotil.
I am not sure if its generally still regarded as a good idea or not but my GI's have told me in the past that taking lots of immodium will make your symptoms worse in the long run, in fact my first one would not allow me to take it at all I just had to deal with the trips to the bathroom.

 

[Jessica]

Yea, Entocort is a bit like Asacol. I believe it's the methos of delivery (type of capsules) that make it so that they don't break down until they reach a (kinda) specific part of your intestines.

This is my 2nd doc since I've been diagnosed. The first had me on Lomotil. When my second found out, he got really upset. Said he didn't want me to become addicted to the opiates in it, and make me switch right away.

For the spasams/cramps, I used to be on dicyclomine. I was never this bad before either. It feels like my insides are throwing fits at least once or twice a day. I haven't noticed a pattern yet, be it related to eating times or what I'm eating.

As for antibiotics, I believe those are a bit of a waste. I mean, Crohn's isn't an issue with bacteria. And on that notion, my doc also made me stop my probiotics. Says there isn't enough studies showing that they either help/hurt Crohn's. Better be safe than sorry, guess he feels.

You were also diagnosed in your 20's, Nica? Wow. Definitely aren't the best years of my life anymore. Hopefully they can get better once this is really under control though.

<3

 

[Nica]

It's unfortunate that Crohn's is a young persons disease, most are dxed before 35. I consider myself lucky I had my son before I got really sick, looking back I did have some symptoms before, but not enough to make me check into them.

I think that crohn's has taught me to take advantage of the good times, and wait out the bad. I really don't make long term plans now because of it. I never know where my guts will be at.

lomtil and immodium have the same opiates in them I think. They only effect the receptors in the guts no "high" so getting addicted is pretty rare. But with immodium on a regular basis you still run that risk of obstruction, toxic mega colon and a few other things (at least thats what I was told before). Also, if you are in true pain the risk of getting an opiate addiction is pretty low. Physical addiction is always an issue, but true addiction is usually not. For me, when I got the sickest the only thing that helped was opiates, the pain and the D went away and I felt almost normal! BUT, you dont see your symptoms and then don't get them treated. I assume using lots of imoduim is the same thing.

If it starts to get really painful be careful with the immodium, in my experience lots of pain means strictures or obstructions.

 

[Jessica]

I'm starting to be the same about plans. Although my boyfriend's favorite saying is "Don't let your disease live your life for you." I still pause at times when trying to plan out holidays & vacations. Our safest bet so far is cruise ships. They have bathrooms EVERYWHERE!

I just had a colonoscopy within the last two months. I remember the report saying strictures and adhesions. I'm still trying to understand them both and where they came from. Let alone what they lead to! lol Just too much sometimes.

I never have more than one imodium a night. I refuse to. But I went down to half last month since I was doing really well. Only lasted two nights before things crept up too much again. It just shows me how much I need them as my other meds are working.

Hence the start of this thread I suppose.

I am thankful that I didn't have symptoms until college. Knowing how hard it was for myself, I could only imagine what it would've been like in high school or younger. Hopefully I'll be able to have kids and they won't have to suffer this. *fingers crossed*.

 

[Kathryn]

Hi Jessica,

I'm sorry you're going through a rough spot trying to make decisions about future treatment vs what you're on right now because of how you feel. The best "advice" I have is talk to your doctor about your concerns, why you have them, and what he/she thinks would be some changes that could be made to correct them.

I was diagnosis shortly before I turned 25, and it took about a year and a half/two years to find the mix of drugs that gave me the quality of life I wanted without having to take too many pills. I totally have pill issues, which my doctor is aware of and understands.

What works for me now is immuran daily, and a round of pred when I'm in a flare-up. Neither pentasa or entocort ever worked well enough to get me better, and I've gone down the Remicade path when trying to get over a particularly nasty flare-up. I want to feel "well" not "well enough" even knowing and understanding that I will always feel some sort of underlying "pain" or "discomfort". So my GI and I kept playing with what I was taking until we hit on something that worked for me.

The fun of different bodies! Good luck talking to your doctor about your needs and wants regarding your quality of life and I hope it only gets better from here!

-Kathryn

 

[Nica]

Ahh the beauty of doctors saying I found a stricture and not telling you what that means, I guess they assume you already know?

I took a vacation to vegas, and flared, I didnt leave the mirage hotel for 2 days, ran to the elevators to my room numerous times.. but figured out how to win on the slots I hit for 1000.00 in a single shot and several 100.00 + wins. So my vacation didn't cost me anything at the end of it... My family all went to the sights while I plugged away at the slots and ran to the room every so often, it could have been worse. I did get really badly dehydrated from that trip (being the middle of a desert how did that happen? LOL) and wound up in the ER shortly after the trip but it was worth it! I want to say I lost 12 pounds that week.

Jessica, I just noticed you don't live to far from me. There is a doctor in Gainsville that is supposed to be "THE" crohn's specialist in Florida, I keep getting referred there and my insurance won't cover it. You might want to go have a consult with him.

 

[Jessica]

I guess I just need to have a heart to heart with my doctor. I have an apointment scheduled for Tues Nov 30. Day after my birthday (*sarcastic YAY*). I've never seen him with someone else. This time my boyfriend will be going with me. He's never been to any of my apointments before. Only tests. It'll be nice to see how he reacts to it all. Plus, maybe he'll help give me strength to stick to my guns.

Nica - What's the name of the doc in Gainesville? I've gone all the way up to MayClinic for second opinions. I can travel when necessary. Esspecially if the doc is worth it.

Kathryn - Thanks for the advice. I'm glad that you were finally able to find a right mix of meds. Doesn't sound like a lot of pills.

Hope everyone enjoys their Thanksgiving <3

 

[Nica]

Dr Shiniski is his name he was the head of Gastroenterology at UF.

Have a Happy Thanksgiving! Don't eat too much you shouldn't!