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And the tummy troubles continue...

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Ulcerative Colitis
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Posted 4/7/2016 4:00 AM (GMT 0)
I went to my pcp today because early in the morning I called and they put me in a cancelation slot.
He advised me to up my imuran to 100mg and he said I might be able to lower it to 50 after tjings look better.
I am so happy that I have such a good pcp

Also, he wanted a urine sample cuz I am having urinary pain. But when I went to give the sample messed it up. I relaxed and than I had an accident (convienentky over the toilet)

He also said that depends can cause utis
Sorry for rambling (and that I didn't bring up rectals)

Thanks guys
Posted 4/7/2016 1:26 PM (GMT 0)
raising imuran best done with blood work to check theraputic dose, metabolites, and liver

may also take a few weeks to show result

good luck
Posted 4/7/2016 2:20 PM (GMT 0)

Dikid said...
I went to my pcp today because early in the morning I called and they put me in a cancelation slot.
He advised me to up my imuran to 100mg and he said I might be able to lower it to 50 after tjings look better.
I am so happy that I have such a good pcp

I mentioned in your previous thread that my GI recommends upping the dose for a few weeks as a treatment but if you continue after 2-4 weeks at the higher dose then you need to get blood work done.

When is your next Remicade dose? You might want to increase the frequency to 6 weeks between infusions, that was the only way Remicade worked for me, double doses every 6 weeks.
Posted 4/7/2016 2:58 PM (GMT 0)
Thanks!
Hopefully the increased dose will be temporary
My next remicade is supposed to be in about 5 weeks
Posted 4/7/2016 3:19 PM (GMT 0)
Dikid,

Maybe your PCP can get the Remicade antibiodies tested for you; I'd be concerned about the insurance company covering/approving it if it is not done at a GI's office....you know how insurance companies are, if they can reject it they will.

How often do you get the infusions? 8 or 10 weeks?
Posted 4/7/2016 3:37 PM (GMT 0)
I get the infusion every 8 weeks.
I have an appointment today with the GI dietician so I think I am just going to ask her advice
Posted 4/7/2016 3:45 PM (GMT 0)
Didn't you have migraines after your last infusion? and now you're semi-flaring? I'd try to get the antibodies tested, you might be having a reaction to the Remicade. I agree with your PCP about upping the imuran is a good alternative right now.

I'd try to get an appointment with your new GI as soon as possible.
Posted 4/8/2016 3:36 AM (GMT 0)
Thanks. So I saw the GI dietician and she mentioned she wants to discuss what's going on with my doc!! Yay so I don't have to deal with the awkwardness of it.
She said he might want to increase my frequency of remicade
And test levels n stuff- so she was thinking along your lines about reaction or antibody possibly

And she thinks I am having some malabsorbtion going on. She said it might be something like celiac
Esp cuz immune things like to come together
But if I test negative for celiac than she wants me to have a upper endoscopy. Joy

At least I won't need any obnoxious bowel prep for that
Posted 5/6/2016 3:45 PM (GMT 0)
Dikid,

How are you feeling?
Posted 5/6/2016 3:59 PM (GMT 0)
Thanks for asking!

I am doing ok now,
Doc tested for celiac which came back negative
He ordered a CT E to check for small bowel inflammation
I am waiting on insurance before scheduling

How are you doing?
Posted 5/6/2016 5:32 PM (GMT 0)
Have you gotten switched over to the new GI yet?

Don't wait too long on the insurance scheduling; my last scan I had to call them a get them to approve it, mine got lost in the approval process.

I am doing ok, last week I started my higher dose of Stelara (90 mgs every 8 weeks, originally it was 45 mgs every 12 weeks), I still think that I could use a higher dose because things aren't perfect but they are better. I'm restarting Enteragam and mixing it with Oatmeal and that really helps mask the awful taste of it. One of my GI's partners swears by it for pouchitis but my GI is skeptical. I just really want to get off of the antibiotics.

I've been tested for Celiac too, which came back negative... kind of wish it was celiac because that would've been easier.

Have you been tested for SIBO? that can affect the small bowel, it is common with IBD'ers. I tested negative for that too, again that would've been easier to treat.
Posted 5/6/2016 5:56 PM (GMT 0)
Not yet it's a complicated process I am trying to get into one in the same practice, who is not currently taking new patients
The switch needs to be made by my GI (I think the practice doesn't want ppl switching between all the docs all the time)

I am not going to push for the CT E just yet becuse I am hoping to see if the other GI thinks that is a good idea

What testing do they do for SIBO?

Cleveland is kind of a trek but Bo Shen is possibly the worlds best pouch specialist, maybe he would look at your profile without you going?
How long do they think the increased stelara will take to help?
Posted 5/6/2016 6:31 PM (GMT 0)

Dikid said...

What testing do they do for SIBO?

It is a 2-hour breath test for SIBO, you can technically do it at home and mail them the results.

I had the test in the room with about 6 other people, we all had to blow into these bags every 15 minutes and they would measure it (probably bacteria).
Posted 5/6/2016 7:09 PM (GMT 0)

Dikid said...

Cleveland is kind of a trek but Bo Shen is possibly the worlds best pouch specialist, maybe he would look at your profile without you going?
How long do they think the increased stelara will take to help?

I am following Dr. Shen's diagram of treatments (his protocols), I'm in the biological side of the treatment pyramid and unfortunately I've already used most of the biologicals when I had UC so I can't use them now due to antibodies.

I'm ok with the pouchitis, it's really not that bad but it's just something that I have to deal with and treat. If I was in really bad shape then I'd definitely go to Dr. Shen and if he recommended it then I'd go back to an ostomy.

My goal is just to get off of the antibiotics. I'm hoping that Stelara can accomplish that, anyway since it is not approved yet for CD the dosing for Stelara is not exact and the insurance company has final say over this stuff since it is off-label. 90 mgs is 1/6th of the IV dose if I was in the clinical trials.

I should have probably chose to go with Entyvio but I wanted something that worked quicker so I could get off the antibiotics.
Posted 5/15/2016 6:37 AM (GMT 0)
Update:
I had my remicade on Friday and I feel so much better! Like a new person. The blood is gone and the cramping is minimal.

I took Benadryl the night before and the headaches are not as bad as last time!

I think this means I just needed the infusion sooner. It would probably be a good idea for me to call the gi and let me know about this.

Can you get into some kind of clinical trial so you can get a higher dose of Stelara
Posted 5/15/2016 12:25 PM (GMT 0)
Sounds like you're getting a response then. The frequency is up to every 4 weeks for remicade. Antihistamine stays within your body for 24 hours. Why only 50mgs of Imuran? A more typical dose of Imuran is 100 or 125mgs (assuming a 1.5 to 2.0mgs per kilogram and 65kgs).
Posted 5/15/2016 1:00 PM (GMT 0)
It seems I'm on the imuran just to prevent antibodies to remicade, not as UC treatment. When my remicade works it's pretty good stuff

I agree with moving it up. Now I have to brave the office. this stuff gives me mild anxiety
Posted 5/15/2016 1:56 PM (GMT 0)
I'm glad that you are feeling better, I always needed to take antihistamines with biologicals.

Dikid said...

Can you get into some kind of clinical trial so you can get a higher dose of Stelara

I'm going to guess that since it is a blind study that I'd be excluded because I'm already on Stelara. Plus, there is no way that I want a placebo.

The good news is that I had a raging candida infection going on that I didn't realize due to the antibiotics, I just started treating it a couple of days ago and I feel 100% better.
Posted 5/15/2016 2:12 PM (GMT 0)
I'd ask about using Imuran to treat your uc as well. It seems you have a severe and stubborn case of uc, so it might help. I'd ask, assuming your WBC isn't too low right now.

Sucks it gives you anxiety calling them. Any reason why? Can you email them ir use a patient portal to send requests in?
Posted 5/15/2016 3:43 PM (GMT 0)

Dikid said...

Can you get into some kind of clinical trial so you can get a higher dose of Stelara

I'm going to guess that since it is a blind study that I'd be excluded because I'm already on Stelara. Plus, there is no way that I want a placebo.

*slaps forehead *
Obviously, I didn't think of that! Feeling a tad stupid about that.

Glad that the infection was found and it is clearing up! And even "gladder" you are feeling better.

Ipoop, I asked about increasing imuran and he didn't think it was a good idea. It's possible he was looking at labs when he made the decision.

The anxiety thing is rooted in that I always thought I was a hypochondriac. Most ppl don't always have tummy aches as a child. I went very long undiagnosed cuz my commonly recurring abdominal pain was never investigated. When I got older I stopped complaints cuz I realized that Nobody likes a complainer and I assumed my family was right and it was all in my head. Being diagnosed didn't change that and part of it is probably my family not being understanding and still believing in faking it a bit. Who knew you could fake inflammation but whatever.
I started just seeing a therapist who deals with chronic diseases, esp GI. She has crohns herself so she gets this stuff.
Posted 5/15/2016 4:35 PM (GMT 0)
Good luck, anxieties aren't easy to fight, it can certainly be a struggle. Stinks on your family creating them...
Posted 5/15/2016 4:46 PM (GMT 0)

iPoop said...
Good luck, anxieties aren't easy to fight, it can certainly be a struggle. Stinks on your family creating them...

Thanks
I can't just blame my family tho. I let myself believe it and I still feed into that behavior.
I'm working on myself but it's hard. I do not want to take anti anxiety meds becuse I think in my case it would just be numbing something that with time, will get worse if not dealt with and can be dealt with by cbt.
Also it's not generalized anxiety 24/7 it's just being assertive about my needs and symptoms to my physicians and healthcare providers.
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