Should I be worried?

UPDATE:

I saw IBD Specialist yesterday for my first follow-up after my colonoscopy on May 2nd (3 weeks ago).

Let me rewind and say that I have been stressing about this appointment, afraid IBD Specialist would give me options I didn't like and then bully me to pick one. I have been waiting for test results and honestly looking more and more at surgery.

I tried to drop from 40mg to 35mg prednisone last Monday and it was awful. I had horrible withdrawal symptoms and started bleeding. That was very defeating and I knew it was a bad sign. I went back up to 40mg and stabilized. Actually not doing too bad--having BM's every day (this requires dulcolax though) and not too much blood. My tenesmus is much better and I haven't taken any bentyl in over a week. I'm still fatigued but managing to live my life despite it--albeit--my house is messy because somethings gotta give. It's great that my symptoms have improved but since I'm dependent on the prednisone + humira + cortifoam, it really can't be considered a "win".

Here are things we considered when discussing my treatment plan:

1. I am TPMT "normal" and CAN metabolize 6MP & Imuran--so these drugs became an option for me.

2. I do not have antibodies to Humira--BUT

3. My Humira serum levels were very low (they were 2) and IBD Specialist crinkled her nose and said "That's not doing anything for you".

4. Because my Humira levels are so low, I wouldn't have to wait any amount of time to start a new biologic, if that's what we decided.

5. So here are the options we discussed:

A. Humira + Imuran
B. Remicaid + Imuran (if I don't have antibodies)
C. Stelara + Imuran
D. Entyvio + Imuran
E. Diverting colostomy (temp until I heal)
F. Permanent colostomy

We discussed the pro's and con's of each treatment. I waited patiently for IBD Specialist to finish making her flow chart and explaining everything to me, before I asked questions and gave input.

My first question was "Am I a candidate for a j-pouch?" And I knew her answer would be "No", which was correct.
I immediately eliminated the option of a diverting colostomy, stating that if I was going to do surgery then I would choose the permanent surgery, since that's ultimately what I want...

Though I am disappointed that the j-pouch is not an option, I was happy when IBD Specialist said that surgery IS a very good option for me. Since I have never shown inflammation outside the colon, she said the chances of me developing disease elsewhere is maybe 2% and that after surgery I would not need to take any meds anymore! Woot! Ultimately I want a med-free, disease-free life, so that is very encouraging. I could live the life I want to live with an ostomy--barring complications.

But I'm not ready for surgery yet.

I told her "I've been researching and reading peoples' stories, and I'm encouraged because even people who have complications tend to be happy they had the surgery. I was afraid of recovery time but I see that most people feel better immediately and are active within a week or so after surgery. However... I'm having trouble getting excited about it. I want to feel good about it, but I'm still struggling to imagine life with an ostomy and I am scared of complications--if it didn't turn out the way I planned". IBD Specialist totally understood.

I told her I like the Humira because I do think it has helped me--I was much worse on steroids alone--and I like that I have no side effects. I have been wanting to try adding 6MP/Imuran to see if that can help me wean from the prednisone. So Humira + Imuran is my first choice. She said ok, no problem.

We eliminated Remicaid altogether because my response to it wasn't that good--I still had to use Rowasa enemas. If the Humira + Imuran doesn't allow me to get off prednisone, we chose Stelara + Imuran as my next drug therapy, mostly because Stelara works more quickly than Entyvio.

But... I am considering just going straight to an ostomy if the Humira + Imuran fails. It really just depends on how things go...

Something "clicked" during this visit. When I got in my car to leave I didn't cry or feel scared or confused. I felt relieved. Because surgery isn't sounding so bad. I am starting to have a positive vision of my life with an ostomy.

My family is going on vacation from June 4-10th and I asked her to keep things stable until I returned because I want to enjoy it. IBD Specialist said "Of course" and told me to just add the Imuran but don't worry about dropping the prednisone until I get back. I appreciated that. I will have blood drawn for monitoring on June 2nd and then I will see IBD Specialist on June 16th and have blood drawn again. I need to get a flu shot and a pneumonia vaccination. I am nervous about getting on a plane and also going to Disneyland (remember the measles outbreak?) while on 40mg prednisone + humira + imuran. On the other hand...my immune system is relentless and I'm physically pretty strong right now so chances are good that I will be fine. But any suggestions on how to stay healthy while traveling are appreciated.

So what do you think guys?

Good luck with everything. I'd try all my drug options before an ostomy. I hated the ostomy (granted I only had a temporary), but mine was always itching or burning, sleeping was awful because if you turned you had to be careful, you could feel the ostomy flopping around, couldn't lay on your stomach, I was always worried about leaks and if I had all my supplies, how long ago did I change the wafer last as to if I needed to change it if I went somewhere over the weekend etc. etc. Just a lot of hassle, not comfortable, body image was awful, just not a good fit for me.

Also, you'll probably need to visit a doctor who has serious knowledge of pred tapers if you're having serious withdrawal symptoms going from 40-35 so I wish you the best with that. I had 103* fevers dropping from 5-2.5 so I can only imagine how it will be for you.

Bull101 said...
Good luck with everything. I'd try all my drug options before an ostomy. I hated the ostomy (granted I only had a temporary), but mine was always itching or burning, sleeping was awful because if you turned you had to be careful, you could feel the ostomy flopping around, couldn't lay on your stomach, I was always worried about leaks and if I had all my supplies, how long ago did I change the wafer last as to if I needed to change it if I went somewhere over the weekend etc. etc. Just a lot of hassle, not comfortable, body image was awful, just not a good fit for me.

Also, you'll probably need to visit a doctor who has serious knowledge of pred tapers if you're having serious withdrawal symptoms going from 40-35 so I wish you the best with that. I had 103* fevers dropping from 5-2.5 so I can only imagine how it will be for you.

Thanks Bull--what is your story? Like how long did you have UC before you had surgery and how old were you at the time of surgery?

You make good points because people gloss over some of the limitations of ostomies. I like to sleep on my stomach sometimes.

Bull101 said...
I don't want to be a negative nancy, I'm just sharing my experience with it and explaining my reasoning for it. I'm sure you also get used to it I only had it for like 8-9 weeks.



I got diagnosed with UC Jan '15, went through several 5ASAs and enemas/supps, to azathioprine, to remicade, to Entyvio, saw a IBD specialist that had medical trials but chose to forego that, had my first surgery September '16, 2 step JPouch, reversal in Nov '16. Born in '91.

I see where you're coming from. My deal is, I've been on meds for 13 years already and being that I'm only 37 years old, I can look forward to being on meds for another 30+ years if I don't have surgery. The meds themselves have consequences (you know the laundry list of potential side effects)--many (most) of them are "new" (less than 20 years old) and we don't even know what the long-term consequences of them are.

I want to spare my liver, pancreas, heart, joints, etc. Also, I don't like paying for all these meds and I hate my morning & nightly routines of swallowing pills and sticking enemas up my butt--which is what I would have to do every day for.the.rest.of.my.life.

Plus now I have a kid. I don't want to be "sick mommy". I dont like her seeing me toss back pills and take injections. I dont like laying on the couch on days where I feel bad or dragging her to doctors appointments. I'm an athlete--I want to show my daughter that a woman with an ostomy can do a triathlon and coach soccer.

I totally see why a young man such as yourself would choose drugs over an ostomy because I would have too! But not anymore. I've had just about enough of disease and drugs.

Post Edited (Plucky) : 5/23/2017 12:08:09 PM (GMT-6)

Out of curiosity, why are you not a candidate for a J-pouch? What are the disqualifiers, if anyone knows?

Kanva said...
Hooray ... it sounds like you found a doctor who will take time to talk and listen to you!
I think staying stable through your vacation is a good goal, too. You deserve time with your family.
I was just thinking today about how UC is such a journey, and it can't be rushed. There's no shortcut to acceptance of any of your choices, if you ask me ... It just takes time. So if you have time healthwise to consider your options, that's great.
And I also would say that I didn't embrace the idea of having an ostomy before my surgery at all. I knew I needed the surgery and had chosen it, but I REALLY was dreading the ostomy. It turned out to not be a big deal for me at all. Don't get me wrong, it's not ideal, and it does take time and effort to manage. But for me, it's much easier to deal with than the worry of being in an uncontrollable flare and on a bunch of meds.
For me, starting Imuran didn't cause any side effects. And for me, even though I was on all those immunosuppressive drugs for a year or more, I didn't get sick much.

Kanva thanks so much for sharing your experience because I want to know all about what to expect--fear of the unknown is the worst, so I want to feel as prepared as possible.

I started 50mg Imuran yesterday and I feel bloated--up maybe a 1-1.5lbs on the scale. It's uncomfortable. I also feel anxious but there are plenty of other reasons for that besides Imuran so can't say it's to blame. But oddly enough I feel like it is working already.
Trying to motivate to take my toddler to the pool. I have to wear a rash guard and a big floppy hat to protect from the sun because I have become very sun-sensitive. Feeling bloated does not help either. Uhg. But grateful to have the energy and be stable enough to go to the pool.

Hmmm your bloating is most likely from Uceris and Prednisone if you are still taking those (listed within your signature). Becareful with salts while on steroids as that can exacerbate water retention and bloating. I haven't heard of immunomodulators causing that symptom. Initial nausea occurs with about 20% of those new to the medication, and you can take it at night, just before bed with a snack to help reduce the odds of it. It's an initial symptom and goes away within a month or so. Not sure if that's what you meant by feeling bad?

You could try 6MP if you want to Purinethol is the brandname and the generic is Mercaptopurine (often abbreviated as 6MP). Imuran is metabolized within your body into 6MP. Taking 6MP directly saves a step, and gives you a smaller and lower dosed pill. I'm not sure that the side effects are all that different. I suppose there's only one way to find out.

Huh that's weird. Certainly not common but not impossible. Worth trying the 6MP instead. Some do report fatigue on immunomodulators, and I've read that enough to believe some correlation is possible. Often it's initial and some have said long term.

climbsnowgirl said...
Hey Plucky,
Since you posted tuesday, I was thinking about the different treatments that your new doc proposed you.

I was put in the same situation 2 months ago as in my case, I do not response to anti-TNF. So I had to choose between Stelara and Entyvio. Took Stelara because it usually works quicker.

The thing is: your doc offered you the option Stelara+Imuran and now you think you don't respond too well to Imuran. Well, I shared with different people that were recently put on Stelara and none of them had it combined with Imuran. Maybe you should ask your GI about it, but if eventually you choose this option (I think it's a great one in your case, I do agree with what Ipoop said), it may be overkilled or unnecessary to mix it with Imuran. Your GI looks good and has it a relatively recent medication, practice may still be different from a GI to an other, but I just wanted to let you know that the option 'only Stelara' could be considered in your case.

Thank you! I have been starting to lean towards the Stelara, since my Humira levels were so pitifully low and ipoop also suggested to just move to Stelara and really the only reason I haven't is fear of the unknown--I'm at least "stable" now and I'm afraid of backsliding and becoming very ill again.

How long did it take before you felt Stelara was working for you? Any side effects? What were you taking prior to Stelara? Were you actively flaring when you started Stelara & how bad (mild/moderate/severe)? Did you take it with prednisone or anything else? Thanks in advance for any experience you can share!

I'm going to try to answer all of your questions, but everyone story is complicated (and english is not my first language!) :P

What were you taking prior to Stelara?
I was put on Remicade last september (6 wks , 5mg/kg). I did flare in october was put on 30 mg of Pred. I did flare again at Christmas, it was c-diff, got hospitalized, put on pred 40mg, 2 months Vanco, started Remicade protocol from zero (I simply had no more Remicade in my blood) and put on 10mg/kg every 4weeks. After, I got a big flare mid march.

Were you actively flaring when you started Stelara & how bad (mild/moderate/severe)?
Yes, it was severe. This flare was the worst. Every stool test came back negative. My GI was out of town, so until he returned, his collegues took care of me. I got an emergency coloscopy and got re-diagnosed Crohn. They only could go 20cm in, even if I was on Fentanyl, I was in pain the whole time. I was dehydrated and my pulse was monitored at 140. This GI put me on 30 mg pred. Went back to hospital next day for IV hydratation solution and bloodwork with my nurse. My CRP was to high (I think it was 200, but I wasn't too conscious of what was going on...), so the gastro head chief met me and rise up pred to 40 mg. The day after, finally met my GI, he was really serious. I had lost 15 lbs really quickly, Remicade wasn't working at all (they checked everything, levels were good and no antibodies) and if I wasn't getting any better, we had to plan surgery soon. So he rised pred to 55mg, he made the calls so I could start Stelara the next morning, he gave me a month antibiotic (Vanco) in case it was false negative (in fact in did got better when I started Vanco). And I got better... It's been a long journey, but I am feeling better every day since then. I gained back 20 pounds overall (130 lbs), which is almost my healthy weight (135 lbs).

How long did it take before you felt Stelara was working for you?
So now, I am on 15 mg of pred, not much of withdrawal symptoms for now (wouhou!). It means I will be able to continue to taper to 10mg as I did every week. Usually it's the hardest part when I get to 15mg...
I'll have my second dose of Stelara tomorrow. And next week, we'll do bloodwork for CRP. So I think I should know next week or the week after if it works!
For now, I am doing great really, but the pred and the antibiotic does/did miracles on me. And usually I can surf on this virtual remission weeks after I stop pred. And bam, I eat something bad and I flare again, back on pred... So we'll see but maybe my GI will plan a colono to make shure Stelara works.

I think I answered everything, I could post over here my results about Stelara when I get them if you want
I am super optimistic, my GI is also doing some research and he got a 80% success with Stelara in his last research.

UPDATE:

I skipped taking Imuran Thursday. I contacted IBD Specialist's nurse and told her all the ways that I hate Imuran, and asked if I can try 6MP instead. IBD Specialist agreed and I started 6MP on Friday and I feel good! I feel better! I'm having less blood in my stools and more formed stools. I took my Humira last night and usually today I would feel exhausted but instead I am feeling really good--strong and energetic--and have not to run to the toilet every time I eat or drink something. I know it's crazy to think the 6MP could be working so soon because supposedly it takes weeks, but I do believe it is making a difference. Trying not to get too excited but I can't help it--maybe this will work and I will get better and wean off the prednisone. Maybe. Fingers crossed.

FlowersGal said...
Crossing my fingers AND toes for you plucky!

Thank you FG!

UPDATE:

So I just got back from my week long family vacation to California with husband and toddler. It went well, but I did have some rough days--this was at least partially because I ate too much/ate the wrong foods on some days, but also the change of pace and change of climate, etc. I was up a lot in the night with urgency, gas/explosive, tenesmus...it was definitely a setback as far as my healing goes. We were staying with friends and I was glad most of my toileting took place when everyone else was asleep so it wasn't so obvious that I was blowing up their guest bathroom--I did feel very self conscious toileting in someone else's house. However, despite my issues I managed to do a lot of walking and socializing, except that I would go to bed with toddler each night instead of socializing with the adults. And I really wish I could have enjoyed some wine while in wine country. The trip went smoothly--I separated all my pills into a pill case and I mostly took them as usual. I did skip my cortifoam here-and-there. I bought a diabetic cooling case to transport my Humira pen and had no issues getting it through airport security in my carry on. And so far I have shown no signs of illness despite going tgrough airports/airplanes/disneyland/multiple indoor play places and an aquarium, plus our hosts had a virus. Could be a miracle but I'm still waiting to see if I caught something. I did wash my hands and use hand sanitizer religiously.

So I got some blood test results from June 2nd while on vacation and they're not encouraging.
Hemoglobin was 9.5 (still anemic).
WBC slightly high, RBC slightly low, other stuff slightly high/low, and my Humira levels still sucked--a paltry 2.1--and Humira levels need to be 5+ to be clinically effective and 8+ to really heal you.

The Humira isn't working.

I am also still stuck at 40mg Prednisone.

So I see IBD Specialist this Friday June 16th and I'msure she'll agree with me (as we previously discussed) that it's time to try Stelara.

Anybody have experience or information about Stelara?