So, I *thought* I was headed for remission. I *thought* I would be good-as-new in a couple months and ready to run a marathon (not that I run, but I would like to know that I could if I wanted to) and all cleared to get pregnant again–I am so longing for another baby.

But no.

Last Monday I dropped my Prednisone from 25mg to 20mg and tried it for 2 days. My symptoms increased so I was like “Oh hell no!” and increased my Prednisone to 25mg again.

But the damage was done. I opened “pandora’s box” when I dropped my Prednisone and my *beast* of an immune system woke up.

And it keeps getting worse, not better. My frequency has increased from 2-3 toilet sessions to 5-6 sessions. I have cramps and tenderness in my lower abdomen. I have to *run* to the toilet, as my urgency is back (thank goodness for depends). I have tenesmus (feeling like you have to poop but nothing comes out) and the straining is inflaming my hemorrhoids. And I’m not passing much if any stool, just bright red blood–so back to a liquid diet I go.

I talked to my awesome GI nurse in the midwest last week, and I have planned a trip to go visit family and friends and also see my old GI and a colorectal surgeon while I’m there. If I have the surgery to remove my diseased colon (more like *when*, but whatever) I want to do it at my old GI’s hospital because they are nationally ranked as a good hospital for colorectal surgery and I would be close to my support system.

I can’t believe I’m seriously to the point of considering surgery. It feels surreal.

For those who don’t know, my surgery would entail removing my colon in one surgery and fashioning a stoma (a hole in my abdomen where my intestine protrudes) and then I would be pooping in a bag for several months while I heal. Then I would have a second surgery to reattach my intestines to my anus, allowing me to poop out of my butt “normally”. But, it really wouldn’t be normal because without my colon food will pass quickly and I would have to go to the toilet as often or more often than I do now. Which is not desireable. But best-case scenario I would be “disease free” once my colon is removed and no longer need to take medications or worry about getting sick.

Worst case scenario is I might have constant infections or lingering disease in my anus that requires medications. I could also end up with a permanent ostomy bag (poop bag that I wear 24/7 for the rest of my life) if the reattachment surgery fails.

Even though I don’t want to deal with surgery, or a second surgery, or an ostomy bag, or pooping frequently as a ‘new normal’, or the potential complications…

I would still choose surgery over loading myself with drugs and feeling like sh*t for the forseeable future. I would rather live life on-the-go with an ostomy bag than live life on-the-couch with my diseased colon.

But there are lots of other things to worry about besides where and when to have surgery.Β Like how will Mr. MLACS take off of work to deal with this? Who will help us with BG? What can I expect during recovery–how long before I can lift my 34.5 lb kid into her carseat to go to the store/park/etc.? What will this do to us financially? And how will I come to terms with the fact that we are not having another baby (when that was the cornerstone of my ‘5 year plan’)?

I see a colrectal surgeon tomorrow (here in the South) regarding my fistula. And I see my current GI on Wednesday. Maybe current GI will give me some medication options, but I’m not sure he can or will do what needs to be done to get me well.

Mr. MLACS is pissed that I’m sick again and he was a complete dick about it last night. I really wish he could support me the way I supported him through his medical crisis–I was positive and very “it’s us against the world” and I did a lot of reasearch about what was going on with him. He has a sour attitude and can’t hide his frustration and anger, which makes me feel anxious and guilty on top of all the other sh*t I have to think about and deal with. It’s ok for him to have these feelings but it’s not ok for him to stew in them instead of dealing with them. And then blow up and heap his issues onto my already full plate–which he did last night. I was so exhausted and just… numb… I didn’t even cry. I’m just really disappointed in him and I doubt his ability to deal with whatever comes next. He just texted me that he can take off work to watch BG and take me to my appointment in the city on Wednesday. But if he’s going to use it ammunition to browbeat me during an argument (which he did last night) then I’d rather he just go to work so there’s one less thing for him to complain about. I don’t need his drama right now.



10 thoughts on “Nope.

  1. Nooooo!!!!!!!!! No! No! No! This cannot be happening to you again. 😦 Ugh! I’m so sorry. I had a couple days of GI trouble last week and as I was laying there hurting, all I could think was “MLACS deals with something painful like this ALL. THE. TIME.” I prayed for you to feel better. I so want you to be healed! I’ll keep praying. I hope at your upcoming appointments, your drs will be able to get you some relief. Hugs!!!

  2. πŸ˜” what the heck?! This is literally poop!!!!!! I missed a few blog entries I think but I’ve just went and caught up. I wish you a wishing well of luck with all your dr appointments and treatment going forward from here. So so difficult 😒
    Mr MLACS needs a boot up the arse! Sorry he’s not being the person you need him to be right now.

  3. Damn it. I am sorry this is happening. Why are our immune systems such dicks? I kept waiting for the other shoe to drop and hoped I was wrong and that the Humira would really turn things around. I really hear you about a bag with a life bring better than the immobilizing, painful and shame filled existence. But damn. I hope/wish there are other options… and as for Mr. MLACS: wtf is it with partners and their selfish defensive petty bs? It’s never like that when the shoe is on the other foot yet they need an anvil dropped on their head to remember how to have compassion and get their heads out of their ass? Mine can be like that too. And he wonders why I swear like a sailor… I don’t have answers my friend just so much love and longing for better for you.

  4. This sucks. I’m so sorry the improvement hasn’t continued. And someone needs to get real with Mr. MLACS. It’s crappy that his wife is sick, but doesn’t he realize it’s worse for you? And that he has no right AT ALL to hold it against you? It’s not your damn fault! He needs to support you, or at the very least, SHUT UP. I’m so sorry he isn’t being kinder. That must make this situation feel extra lonely. You deserve better. I’m praying for you, friend! xo

  5. I’m absolutely devastated for you hon. I was really hoping you were moving towards remission too. Everything seemed so good. WTF? I understand why you feel that surgery is the best option at this point and agree that life post surgery, even with the possibility of a permanent ostomy bag, will be a far bigger improvement in your quality of life than you have right now. But jeez, I really hope it doesn’t come to that and your doctor’s can collectively find a solution for you that will get you healthy and not take away so much from you, including your dream of another baby. It’s just all so unfair and cruel. You’ve been through enough!

    And Mr MLACS is pissing me off! I get that he’s probably really tired of doing it all. It’s understandable, it really is, but that’s what marriage and co-parenting is all about. You are unwell. Really unwell, and he needs to step up. This is the how it works. And it’s not like you haven’t shouldered the brunt of a lot of the household and family responsibility in the past. What about all those years he worked out of country? You were on your own and having to deal with everything solo for a long time, including when BG was really little and demanded a lot from you. He needs a reality check. Hoping he gets it together and gets over his pity party quickly because you need him. This is literally shit. I wish I had more to offer you hon. I wish I lived closer and could be there for you to help out with BG or drive you places or just give you a big hug. Know I am praying for you and really hope this is just a temporary regression because you weren’t ready to be weaned of the steroids just yet and that you can still get past this and move into remission. Sending all the healing energy I have and lots of love. Big hug my friend. xoxo

  6. My heart goes out to you ❀ there’s nothing more heart breaking then thinking you’re finally on the mends to feeling better, only for your body to say just kidding ! And I’m sorry to hear about your partner too! You’re already going through so much 😦 I hope things turn around for you

  7. Oh my goodness, I am just catching up and seeing this now. WTF! I am so sorry that you are having a flare and that Mr. MLACS is being such a butthead. Ugh. You are right, you don’t need that drama! The surgeries sound daunting but I hate to think of you living with this constant pain and suffering. Wishing you a lot of strength and love. I am sorry this is happening.

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