Saw IBD Specialist and the Colorectal Surgeon this past Monday. There were some surprises.
1. IBD Specialist says if the Stelara does not work (and by “work” she means get/keep me in remission without prednisone) then she said my “only other options” are a clinical trial of a drug (cannot remember the name but started with a “p”) OR surgery…then she told me I don’t even qualify for the clinical trial so that leaves…surgery. M’kay then. I didn’t bother asking her why she changed her tune (initially she said I could try entyvio, xeljanx, etc.) because I had already resigned myself to surgery if Stelara doesn’t work. But I was taken aback that she straight up told me surgery is my only other option.
2. I have been “stuck” at 25mg prednisone for 3 weeks now and still having blood/urgency/straining/rectal pain/lower back pain/joint and muscle pain…I still have enough energy to live my life though and TBH vicodin has been my go-to for my aches and pains because all I need is 1/2 a pill and I feel fine. These aches and pains are only going to get worse as I wean off the prednisone and I don’t want to be reliant to painkillers, so I’m looking into Charlotte’s Web CBD oil. But more importantly, IBD Specialist said she’s ok if I wait 2 weeks post-my next Stelara injection to drop 2.5mg, but…
3. IBD Specialist wants to see me in 4 weeks and if I’m still struggling to wean off the prednisone then BOOM it’s time to schedule surgery. I was like “Um, I do not want to deal with this right now so can we schedule surgery for after the holidays? I mean, it takes a couple months to get on the schedule, right??” Thinking no big deal so long as I’m stable…but IBD Specialist’s eyes got all big and she practically shouted “NO!” She said she doesn’t want me on the steroids that long and surgery can usually be scheduled within 2 weeks time. I was NOT ready to consider surgery in October (but if you’ve been following my story then you know I’m just not ready for surgery, period, but trying to come to terms with it). IBD Specialist reiterated what I’ve heard many times “Most people say they wish they had had the surgery sooner after they realize how much better they feel post-surgery”. Which helps. But I’m still freaked the f*ck out.
4. IBD Specialist allowed that one of her nurses could help me give myself my 1st Stelara injection at my appointment even though it was technically 4 days early. For some unknown reason, CVS Specialty pharmacy shipped my freaking Stelara to their office, even after confirming that it was to be sent to my home address like half a dozen times. Bizarre. So btw I had to let CVS know that they flucked up and they are lucky I happened to have that appointment on Monday because its a 4 hour drive round trip–CVS said they didn’t know why that happened, oops, they are sorry *sigh*.
5. I told IBD Specialist that I always respond quickly to the biologics but my problem is they wear off quickly. IBD Specialist said there is no way she can justify moving my Stelara up from every 8 weeks to every 4 weeks because there is no evidence to support it (at this time). I told her it would probably stop the blood immediately and it did, just like last time. But my thought is: really, how much time would it buy me (to avoid surgery) anyway? So not faulting her for not trying every 4 weeks.
5. Then I saw the surgeon (CRS) and I liked him a lot! Easy to talk to and he surprised me by saying…
I MIGHT be a candidate for a j-pouch!!!
Ok lets not get too excited because it probably isn’t the best option for me, but I’m thrilled that he didn’t automatically take it off the table as an option the way IBD Specialist did. CRS said that he would remove the colon and send it to pathology, and if it looked like UC instead of Crohn’s then the j-pouch could be considered.
6. CRS offered that I could have a colostomy instead of a ileostomy (leaving a small part of my colon), which confused me because I thought removing the entire colon was standard. He said it used to be standard. He then said many people prefer to take the whole colon out to avoid future disease and also because the output is thicker/smelly-er
and not as desireable with a colostomy bag. I said I’d rather do the ileostomy.
7. I asked about pregnancy with a stoma and he said it is very do-able and they take care to preserve fertility by wrapping the ovaries and fallopian tubes in some sort of gauze-like material that dissolves in 2 weeks–it prevents adhesions, which are the main threat to a womans fertility by having surgery. I said “Will I have to wait like 6 months post-surgery to try?” And he said no way, as long as things go well 3-4 months is plenty of time–this was another surprise.
8. I’m scheduled to see the CRS in 4 weeks when I see IBD Specialist, but if I’m doing well he said I should cancel. He also said I would have the opportunity to meet with his stoma nurse a couple weeks prior to surgery. I told him I’d like to actually try wearing a bag prior to surgery to see how it goes and he said he hasn’t had a patient ask to do that before but he’s sure the stoma nurse could help me do it.
So I left feeling like they “sold” me on surgery. But then started looking at the literature at home and began to feel uneasy again. That’s how it is–one minute I’m gung-ho and certain the surgery will improve my quality of life and allow me to do ALL the things. The next minute I’m freaking out about wearing a bag because it is undeniably a life changing thing.
Then I saw my OBGYN on Tuesday and he said that I should feel free to go ahead and get pregnant NOW even on 25mg prednisone because “lots of women take prednisone during pregnancy and stelara is a category B drug”. Pregnancy put me into remission last time. Maybe I should just go for it even though IBD Specialist acts like it would be criminal to get pregnant on prednisone. For all you ladies, my skin “down there” is a bit thin especially around my perinium and I have not had sex since January for fear of tearing (and because I was like, dying). But OBGYN gave me some estrace (estrogen) cream as it helps to thicken the skin and helps lubrication. So, I’m feeling a little braver about sex. But will wait until I’m ovulating to try.
9. I also saw my Dermatologist on Tuesday b/c I also have peri-oral dermatitis and some strange chin acne that the doc attributed to prednisone. Of course antibiotics would be the best treatment but I cannot take those so he gave me topical creams. This is ALL owing to IBD. Crazy how it affects our body in so many (crappy) ways.
10. My current situation: The Stelara injection worked very well…for 2 days. Since then I have been bleeding with every BM, having explosive diarrhea, cramps, straining, and urgency. My frequency is about the same and not too bad, maybe toileting 5x per day (really only morning and night when I’m home, so not inconvenient) *but* my rectum is sore every time I leave the toilet–I feel the need to lay down after a BM and that is a step in the wrong direction. My energy has been crappy this week too, and Mr. MLACS made it possible for me to just lay around all day Saturday while he took BG out-and-about. I used that time to look at various ostomy blogs, watch ostomy youtube videos, and try to wrap my head around what is happening/what is going to happen to me. I cried–not a lot–but I let out a few sobs that had been trapped inside my chest. I allowed myself to think about the “what if’s”. There is SO much to think about–I have no family here and no friends I would ask for help with BG or for myself–I think if Mr. MLACS takes off 2 weeks that will be enough for me to do light activity and care for BG…what if it’s not? My surgery is at a hospital 2 hours from home so where will Mr. MLACS and BG stay for that first week while I’m in the hospital (will need them nearby)? What ostomy supplies will work for me–what do I need to buy and how much will it cost (belts, underwear, new clothes?) What if I can’t enjoy the holidays with my family? My good friend and her son are coming to spend Thanksgiving with us–what if I can’t cook the dinner I want to make for us? (I mean I can order a meal but I love to cook and this would disappoint me.) What if I fall asleep on my brand new potterybarn couch and wake up covered in sh*t because my colostomy bag burst? What if I go through this surgery with the promise of “feeling SO MUCH better” but then I don’t???
And then I go to “Is it really THAT bad? Do I really NEED the surgery? Maybe I should just try to get pregnant…but what if I don’t go into remission and things get worse?”
ALL. DAY. LONG.
These questions and feelings bounce around in my head. And furthermore, my surgeon seems competent and my hospital is nationally ranked in the top 30 for Gastroenterology–I drive about 2 hours each way to see them because they are good.
The 2 best hospitals are Mayo Clinic (Minnesota) and Cleveland Clinic (Ohio) and I have been encouraged by other ostomates to go to one of these places for a second opinion and if I need surgery. However, I’m too beat down right now and not ready to take the time and expense to go there. I’m afraid I’ll regret it if I don’t go and things go wrong , but I just don’t have much fight left in me.
For those of you who know me, you know I’m a fighter. So if I’m THST beat down, and I am, then something has got to give.
I’m going to speak with my EFT guru next week and I bet she will be able to help me through this and have peace with whatever decision is revealed through tapping. I can’t “unscramble” myself and I need someone to guide me.
Wish me luck. Send me prayers for peace and clarity and courage. Give me any advice you have. Any inspirational quotes (I am too overwhelmed to read a book right now though). Point me towards ostomate blogs. Thanks in advance for your support.