Asking My Colon To Choose Life

Saw my GI today and he very matter-of-factly said “Your colon is a mess. Either it heals or you’ll be having surgery soon”.

I actually looked and felt much better today than I did when I saw him a month ago–when he told me “Oh you don’t want surgery!”–so it felt ironic that he wanted to discuss it today, now that I’ve improved and it finally seems like I have a shot on hell at remission.

But yeah, I agree: either the colon gets it’s sh*t together (ha, see what I did there?!) or I’ll be scheduling a colectomy. When he said that I was struck with both fear and relief; fear of surgery, but relief that my GI fully understands what a burden my colon is and how devastating this flare has been. He based his opinion on my recent lab tests, which showed my inflammation is “off the charts”.

I’m definitely better now than I was when I dropped off those lab tests 2.5 weeks ago, so I feel hopeful that (with a new treatment plan) I can get and stay in remission.

Here is what we discussed regarding a new treatment plan:

  1. GI wants me off the Prednisone. I want off the Prednisone. I dropped from 40mg to 35mg three days ago without issue. I intend to continue to wean 5mg per week until I’m down to zero.
  2. Since the Humira is working, albeit slowly, he has consented to increase the frequency of my injections from bi-weekly to weekly, pending a blood test to measure serum levels to be sure that wouldn’t be overdosing. Meanwhile, he gave me a Humira “booster shot” to take this Saturday in between my scheduled doses. I’m a little confused as to why he consented to this booster shot prior to seeing my bloodwork, but I’m definitely not arguing. Humira is working now so the more, the better IMO.
  3. GI also enthusiastically agreed to put me on an immunomodulator, either 6MP or Imuran, my choice, pending a blood test to see if I can metabolize it–apparently some people genetically lack an enzyme that is required for the medicine to work, and without it the medicine is toxic and can kill you. Yikes. I chose 6MP because it’s been around longer (more studies) and is proven safe in pregnancy and breastfeeding (still breastfeeding BG and still hoping for baby #2). I have to go to labcorp for bloodwork though *groan*.
  4. GI looked at my fistula from the outside and ordered an MRI to see what is going on inside. Pending insurance approval, I’ll have that done next week. He also ordered a bone density scan to see what, if any, damage my repeated use of Prednisone has caused over the years–this is long overdue. I should have this test the same day I have the MRI.
  5. GI threw me for a loop when he suggested I have Crohns and not UC, based on the fact that I have a fistula and he never sees those in UC patients. But I beg to differ–I’ve had this disease for 13 years and never once has it ever acted like Crohns–and in fact–all 4 of my colonoscopies have shown that my entire digestive tract is immaculate, save for the last 6 inches (my anus) which is perpetually inflamed to a greater or lesser degree. I’ve read plenty of research and personal accounts of people with UC that have fistulas, so I was shocked when he suggested that I must have Crohns because UC patients don’t get fistulas. But I’ll let it slide because he’s 90% genius and only 10% crazy.
  6. GI wants to put me on Uceris foam (a foam enema to be administered rectally). When I last saw him, I asked him about steroid enemas and he poo-poo’d the idea saying he “doesn’t like them”. But apparently he is ready to throw everything *and* the kitchen sink at my colon. I’m game, but nervous about sticking things in my super tender and inflamed anus.

I feel better now that my GI is clued in on the magnitude of this flare and has created a plan of action. I was going to flip out if he didn’t DO something today.

And while I accept surgery as an option, I am hoping that my colon is going to heal and stay in remission.

I am asking my colon to choose life.

XOXO,

MLACS

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35 thoughts on “Asking My Colon To Choose Life

  1. I hope your colon will choose life too! I hate for you to have to have that surgery. Hopefully everything you are doing now will continue working. It sounds like you guys came up with a good plan of action. Definitely keep us posted! 🙂

    • Yes! People always think that when you say “getting better” it’s like getting over a cold or flu–you’ll be well in 5-7 days. This is so NOT the case with chronic illness in general and UC flares in particular. Weaning from high doses of prednisone after prolonged use can be (and usually is) difficult. Plus who the hell knows how the new meds and treatments will affect me. It ain’t over til it’s over. XOXO

  2. I have been using the Uceris foam for several months now. They just came out with it and my GI called me and was so excited to get me started on it! I have found the best was to administer with the least amount of pain is while sitting on the toilet and I bought a water based lubricant to add to the Applicator because as it is “pre-lubed” it was not nearly enough!!!! Good luck!!!

      • Hey I am sorry I am just not seeing this. They started me using it 2x a day and now I use it 1x a day. I was feeling better, but I don’t know if I had a stomach bug or my body is flaring like crazy this past week. Going to the Doc tomorrow!! Hope you are doing well, it sounds like you are finding some relief!!! So happy for you!!

      • Must be something in the water because I’ve had a less-than-stellar week myself (which is still great compared to how I felt a few weeks ago). Hope your doc has an easy solution for you! XO

  3. Wish you the best, my sister had UC, and had to have her colon removed and ended up getting a J-pouch to get rid of her ileostomy. I hope in the end your colon inflammation goes down. You’ll be in my thoughts!

    • Hi! I would aim to have the j-pouch surgery should it come to that, but am mentally prepared(ish) to accept a permanent ostomy, should the j-pouch fail for whatever reason (it happens). How is your sister doing? Any complications? Is she happy with her results? Best wishes to her and also to you–I see you’ve got a lot on your plate as well. ❤ XO

      • Yea, it’s hard to be prepared for something like that mentally. It’s changing your body physically and it’s major surgery. It’s an adjustment to say the least. My sister actually had two J-pouch surgeries. The first one failed and she had an obstruction. She actually ended up switching surgeons because her surgeon ended up telling her that she just needed a valium to calm down. He was an ass. My sister is doing well now, she had to have some TPN for awhile because of some nutrition issues, but is doing much better. She had PT for awhile to learn how to go to the bathroom. Unfortunately it didn’t work for her and the doctors did recommend that she go back to the ileostomy, but she uses rectal tubes to go the bathroom and is going against their wishes. I don’t think she’s happy with anything regarding her health honestly. It was a very difficult time for her and she doesn’t like to talk about it much and I think she’s ashamed and it’s very sad. I feel awful and I wish I could help her more, but I don’t know what to even say. But health wise as of right now she’s doing well. I worry often about her because she puts her health way down on the list of her priorities. And that scares me. But as of right now, she’s doing good physically. I think as long as you have a doctor you trust, no matter the outcome things iwll be okay. Sure they’ll be hard…when you have a chronic illness, things are never easy, but when you have a chronic illness you’re tough and I think you’ll be okay.

      • I feel for your sister… I don’t know what an anal tube is but I bet $1 million I don’t want to use one. I would rather run marathons with an illeostomy than deal with a failing j-pouch, but that’s just me. You really need to trust your surgeons (and care facility) so I would definitely travel outside my current state to seek the best care possible if it comes to that. I’m a strong advocate for myself and do my research. Since you’re a nurse, I’m surprised your sister hasn’t implored you to help her research options and care providers, and helped her advocate for herself since she is clearly at odds with her current providers. I would take full advantage if my sister was a nurse! XOXO

      • Anal tube is a tube that goes exactly where it says it goes and helps you go to the bathroom. It supposed to be used for shortterm purposes, but my sister has been using it for at least over a year now. When my sister first got sick I was a nurse aide and then just started nursing school and didn’t know anything, but I always tried to make sure she took her health seriously since it’s something she tends to ignore. I mean she had bloody stools for over a month I believe before she finally went to the doctors. Her surgeon that did her second J-pouch surgery is supposed be one of the best in the world. He was the Cleveland Clinic, but he left and went to NY maybe. From my impression he seemed very skillful, but very arrogant and not respectful. I always say there’s good doctors who are skillful, but excellent doctors are both skillful and respectful. The ones you can trust. I don’t know how my sister felt about him, but I didn’t get a sense of trust from him. Now I just try to encourage my sister to at least manage her health and make sure she’s taking care of herself. She’s very stubborn so I know she won’t go back to an ileostomy unless she absolutely has to and I wish she didn’t have feel that way. I’m just happy that she’s no longer in pain and has mostly good days where she’s not fatigued. And I hope that medical advances keep happening and that better solutions and treatments will be available. That’s always the thing I keep in my mind whenever I’m feeling down about anything I’m going through is that I know research is being done and that gives me hope.

  4. I hope your colon heals and goes into remission too! So glad you have a plan now but hopefully you won’t need surgery. Sending you prayers hon. ❤

  5. I hope your colon chooses life too. So hoping that weaning off the prednisone goes well, I know it above tricky. Just want you to live a happy, healthier life without the chronic pain and worries. Maybe it won’t go away, but I just want it to be better and manageable for you!! Xxx.

  6. I hope it’s validating to you to see your doctor agreeing that things have been really bad and something needs to be done fast. I’m glad you have a plan! I really hope your colon chooses life too. xo

  7. I hope your colon chooses life also! Sometimes I feel like half the struggle is getting a doctor who is on the same page you are. Sounds like you are on a good track finally. Take care of you and keep the hope 🙂

  8. I had a temporary ileostomy as I have stage 4 bowel cancer and my tumour was blocking my large bowel, bur they needed to get my liver under control before I could have the tumour removed. It really wasn’t terrible – I didn’t like it but I took a similar view as you – whatever is necessary for health and life. And I have so much sympathy for you – parenting with a chronic illness is really hard. My little girl is22 months.

      • Thank you. I’ve been a long time lurker on your blog – we were having fertility treatment at the same time as you. My heart has just gone out to you reading your past few blog posts. I can all too well imagine the pain, fear and stress. I’ve been a good chemotherapy responder and at the moment I’m quite well – sick for three post chemo, seedy for one and then generally okay until I starts again in ten days. I’m so hoping for your remission. Illness sucks! Xxx

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