How many more drug therapies do I want to try? When will I feel “ready” for surgery (to remove my diseased colon)? Which surgery option is best for me (permanent illeostomy, j-pouch, k-pouch)?
These are the questions I have been agonizing over since I received results from my colonoscopy on May 2nd and blood tests from these past couple weeks. I have been anxious to learn what the IBD Specialist would recommend at my follow-up appointment this past Monday May 22nd. I was afraid she would only offer options I didn’t like and then bully me to pick one.
I went to the city for the appointment and left Mr. MLACS and BG back home, which was actually good because I needed the 4 hour round trip drive time to myself.
I was trying to act casual when I saw the MA, like “Hey girl” but my blood pressure gave me away–148/80. It was higher to begin with, like 150/90. I groaned and leveled with her that I had been stressing about the appointment. Filled her in on my progress post-colonoscopy: first few days thought I might die, added Cortifoam enemas and they helped, now I feel as good or better than I did pre-colonoscopy *but* it’s moot because I’m still on 40mg prednisone since I got sick when I tried to drop to 35mg. So basically, nothing has really changed.
Then I sat in the small, stark, window-less room by myself for 20+ minutes freaking out until IBD Specialist knocked and entered.
She wasted no time. Asked me questions. Discussed my test results. Then launched into a flow chart of treatment options, during which I was laser-focused, taking it all in and formulating questions to ask at the conclusion of her presentation. Must say, I love well organized notes and flow charts, so I appreciated her giving me the visual.
My test results:
- Colonoscopy showed severe left-sided colitis. However, there was no inflammation outside the colon (good) and all biopsies came back clean. I tested negative for CMV.
- I tested NORMAL for TPMT, which means I CAN metabolize 6MP and Imuran, so these ARE treatment options for me! Yayyyyyy!
- My Humira serum levels were pitifully low (2) and IBD Specialist said this indicates that the Humira isn’t doing anything for me. However, I tested negative for antibodies (to Humira) so it remains an option, albeit a weak one. Boooooo.
So with this in-mind, IBD Specialist presented me with treatment options:
1. Humira + Imuran
I went into this knowing my first choice would be to add Imuran to my Humira. I know the Humira HAS helped me (even if it doesn’t seem like it clinically) and I’m used to it–no negative side effects–so I don’t want to gamble on a different biologic. Since my Humira levels were low I asked about increasing my dose from 40mg/week to the max dose of 80mg/week, but IBD Specialist said 80mg has not shown to be any more effective than 40mg so she doesn’t prescribe the 80mg dose. Frustrating, but ok. Moving on. She said I can try adding the Imuran in hopes it will “boost” the Humira and make it more effective. I was SO relieved she gave me this option.
2. Remicade + Imuran
Even though I tried and “failed” Remicade, IBD Specialist suggested I try it again and heavily medicate (benadryl, tylenol, etc.) in hopes of avoiding a reaction. Like, apparently I should try it even if I do have antibodies. But after further discussion about my experience with Remicade, she decided it’s not an option after all. I was not at all interested in trying it again.
3. Stelara + Imuran
Stelara is a newer drug that has had great results for a lot of people–I’ve been reading peoples’ experiences on forums and it looks promising. It may take only a few weeks to reach “theraputic levels” or it may take months. It’s my second choice after Humira. I hesitate to switch though because I fear getting very ill again if I quit Humira, potential side effects of Stelara, and I want to have a baby and Stelara is a newer drug so there’s nothing to say of it’s safe for pregnancy or breastfeeding. But glad it’s an option.
4. Entyvio + Imuran
Entyvio is also a newer biologic and plenty of people who “failed” Remicade and/or Humira have found success with Entyvio. But it is slow to work–definitely slower than Stelara. So it would be my 3rd choice… except…
I’m really leaning more towards surgery.
5. Diverting Illeostomy (I think it is called?) Where they would disconnect my colon and give me an ostomy (poop in a bag), which could allow my colon to rest and heal. I crossed this off immediately, saying that if I am to have surgery then it will be THE surgery to remove the diseased colon.
IBD Specialist perked up and said surgery is a great option for me. However, as a “Crohn’s Colitis” patient I am not elligible for the J-pouch. Which I already knew. But I need a 2nd opinion before I will accept her diagnosis, and rule out the J-pouch as an option. I intend to seek a second opinion from the Cleveland Clinic. I have not shared this with IBD Specialist, because she acted indignant that I questioned her diagnosis in the first place. So that leaves the permanent illeostomy or a “continent ostomy” in the form of a K-pouch (I’m not considering BCIR). The illeostomy would *theoretically* be the simplest surgery (with no pouch to fashion) and much less chance of complications now or down the road. IBD Specialist said that since I have never shown inflammation outside the colon there’s maybe only a 2% chance of disease reappearing after surgery, so I could expect to live *MED FREE* as in no more pills, injections, infusions, enemas, steroids, etc. Buh bye medicine cabinet! Which is what I want–no more disease, no more meds, living life to the fullest. But then you have to deal with caring for an ostomy and learning to live with the bag. How will I wear clothes–what will be comfortable? What about when the bag leaks (everyone does sometimes)? What about the audible noises a stoma makes as it empties into the bag–will I avoid eating to avoid embarrassing noises in public? What if my skin is super inflamed by the adhesives used to attach/seal the bag to me–I do have reactions to adhesives (like from bandaids and the sticky pads they use for an EKG, etc.) so this is a serious concern for me. If I wanted or needed to remove my entire rectum it would require a 2nd surgery (I thought it could all be removed at once but apparently the rectum removal is complex). The resulting wound from rectum removal may take for-ev-er to close and many people are ‘oozing’ for a year post-op. So, it could be cut-and-dry or it could be more involved.
The K-pouch removes the entire colon and creates a resevoir pouch akin to the J-pouch, which holds waste and gives you some time in between needing to empty it. You have a “valve” on the outside and when you need to empty your pouch you use a catheter, insert it into the valve and it drains your pouch. You can wear your regular clothes without concern for concealing a bag underneath. You decide when to empty your pouch–no spontaneous noises drawing attention in the middle of a quiet room. No worries about a bag leaking, or changing your bag, or skin irritation from adhesives/leaks/etc. But since it is more complex it is also more prone to complications, and since K-pouches are relatively rare (only a short list of surgeons even know how to perform the surgery) you may well have issues finding someone local to treat you in the event that something goes wrong. Is it worth trying?
The J-pouch is most peoples’ preference because it removes the entire colon, fashions a resevoir pouch (J-pouch) out of your small intestines and then reconnects the pouch to the anus so that waste exits the “normal” way, albeit one can expect to need to empty their pouch at least several times a day so it’s still not ideal. The J-pouch generally requires at least 2 surgeries, though rarely will be performed all in one surgery–but that is not best practice. Many people require 3 surgeries, and that would be me. First they’d remove my diseased colon and give me a temporary illeostomy for several months. Then the second surgery they would create the J-pouch. Then several months later the final surgery would close the illeostomy and connect everything together. Three surgeries is a lot. Then there’s the chance that there would be lingering disease in my anus and it would either require me to take meds like I do now or have a 4th surgery to remove the J-pouch and go back to an illeostomy (or possibly convert to a K-pouch). Then there is “pouchitis” which some people (a lot) end up having “chronic pouchitis” and this requires them to be on antibiotics and who the hell knows what else to deal with it–not f*cking cool. I worry that I would be one of the “lucky ones” to have endless issues with the J-pouch, and what I really want (after 13 years of this disease) is to have surgery and be DONE with it.
Thinking about all this stuff is enough to make my f*cking head explode. On one hand, I’d rather have control over when to have surgery and where (such as traveling to Cleveland Clinic) and if I wait until I’m so ill that surgery is my only option then I may end up with a mediocre surgeon and far more complications. But on the other hand, I’m scared. I don’t want to regret whichever surgery option I choose (and FTR surgery is inevitable, just a matter of when). I have discussed it with Mr. MLACS but he’s not got much of an opinion except that he supports me having whatever surgery I choose. I wish my Mom was alive. Not because she would tell me what to do, or hold my hand, but because she would make me feel brave and go forward with whatever surgery without fear or regret. And I could count on her to help me and take care of BG afterwards. I can’t dwell on the way I wish things were, but I wish she was here.
So then, what is my plan?
- Humira + Imuran…except I tried the Imuran this week and it made me feel AWFUL. So now I’m going to try 6MP. If I can’t tolerate it at all then I will be so f*cked. Pray for me.
- Stelara + 6MP…or if I can’t handle 6MP then Stelara alone…maybe…or…
My goal is still to get into remission and off prednisone with drug therapy, and then try to have another baby. Or maybe even to try to have a baby with an illeostomy–but I don’t think I’d try it with a K-pouch or J-pouch simply because they would take awhile to heal and I’m about to be 38 years old, etc.
This…this is what I am working with right now. I actually left my appointment on Monday feeling sad, but relieved. The drugs might work, but if they don’t then surgery could be a great option–provided I don’t end up with complications. I mean, even with complications most people say they would do it again, so…