Three Surgeries Later...

Every so often, someone will comment on this blog, and I feel a twinge of guilt. A lot has happened, and, as a result, this blog is completely outdated!

In August of 2013 (when my son was 5 months old), I had the first of three J-pouch surgeries. My UC was out of control, and my GI basically told me there were no drug options on the horizon.

I was exhausted. Tired of fighting, and tired of missing out on my son's life. (Tired of missing out on my own life!) By the time I met with the surgeon, I was begging to get on his calendar. I was sitting in his office on a Wednesday, and he told me the surgery could be scheduled the following Monday. I couldn't hold back the tears of relief. After 13 years of struggling to avoid surgery, I was now desperate for it.

First Surgery
The first surgery was a total colectomy which left me with an ileostomy. Because my disease was so severe and I'd been on high doses of prednisone for so long, I had many, very painful complications. Immediately after the surgery, I felt great. I ate within a couple days, and things seemed great. But on the third day, everything stopped. Dark green liquid poured from my stoma, and I was constantly emptying my bag. Sidenote: waking up with an ileostomy--and the bag that goes with it--was not as traumatic as one might think. I was so relieved to be done with my colon, it was actually more fascinating to me than anything. A real medical miracle. 

Complications
Anyway, something that was NOT a miracle was all the sh** that hit the fan next. Blood clots in my liver, an abscess in my pelvic area, and then a paralytic ileus which brought everything to a screeching halt. In three days, I had more CT scans and pain than I ever thought possible. But then it ended. Recovery was far more difficult and lengthy than I imagined, but about 6-8 weeks after surgery, I was starting to get into the swing of things.

Waiting for the Second Surgery
Because of the blood clots (and subsequent blood thinners), my second surgery had to be delayed by 3 months. Usually the second surgery is done 3 months after the first, but mine was 6 months later. I wasn't eager to go back under the knife anyway, and life with the bag was easy. I did swimming lessons with my son; really, nothing was restricted with the bag.

Swimming with my son while sporting a bag. Just wore a one-piece, and it was inconspicuous.

After the Second Surgery
The second surgery was uneventful. They constructed the j-pouch, but diverted my intestine so the pouch had time to heal before being used. This significantly shortens the digestive tract which meant nearly constant dehydration. Recovery was easier for me than the first go-around, because I didn't have complications. I now had a "c-section-style" scar, a couple lapro scars, and a stoma. My tricks to staying hydrated were:

• 8 immodium a day (one first thing, two with breakfast, two with lunch, two with dinner, one at bedtime)
• Metamucil cookies

Regardless, I did have to go to the ER for IV fluids once during this time. 

I also experienced leaking around the appliance because the stool was so liquid-y, and the stoma didn't stick out as far as my first stoma. I switched to a new appliance (with convexity) and that helped, but it was still annoying. But anything can be tolerated when you know it's temporary.

Third Surgery

I was terrified of this surgery. I had been so comfortable with the bag, I was dreading the return to the toilet. Doctors cited "diarrhea, leaking, pouchitis" among the potential possibilities, and I just didn't see how that was better than having UC.

But once the third surgery was completed, I got it. Yes, I'll have "diarrhea" forever, but it's not how I imagined (or experienced) before. It's almost exactly like peeing, just out of your butt. Just like peeing, you feel like you have to go, but you can hold it for hours. Here are the (kinda) annoying issues post surgery:

• Everytime I pee, I sh**. Everytime. And it is diarrhea, so it can be...noisy. 
• For the first 4-6 months, I was waking up multiple times per night to go to the bathroom. Then around 6 months, things really seemed to heal and now I usually can sleep through the night.
• Butt burn is real. So real. 
• I have some MAJOR scars. The stoma scar was left open because it's not a sterile wound and would get infected if closed. During the weeks following surgery I kept ripping it open (lifting my son, etc), and now it's a jagged mess.
• Mysterious lower back pain. I have no idea what this is (maybe leftover from the abscess?) but when I stand after sitting, I feel like an old lady. It dissipates quickly and doesn't impact my life.

But in the end...

I am eternally grateful for this surgery. I can't believe I resisted for so long. When I look back at this blog and see everything I did, the drugs I took, the food I didn't eat, the risk to my son while I was pregnant... The surgeries weren't the nightmare I had imagined.

My absence on this blog shows that I almost never think about UC anymore. For so long, it felt like my strongest relationship was with Ulcerative Colitis: it was my all-consuming partner. My life now is about being a mom to my toddler son, a wife to my caring husband, a friend, a sister, a daughter. 

If you're reading this and have ANY questions, or just want to connect, please, please get in touch. If there's anything I can do to ease this road for anyone else, I would be grateful.    

Stool Transplant...Not Looking So Gross Anymore...

I've written about stool transplants before.  But even since then, my perspective has changed from something abstract to something that's a personal possibility.

It's been a week and a half since my first Simponi injections, nothing has changed, and I know I'm teetering on the edge of hospitalization.  After more than a year on high doses of prednisone, I want to avoid getting back on that roller coaster.  There aren't a lot of options.

This article about FMT (fecal microbiota transplant) was in the New York Times yesterday.  In short, taking a healthy person's stool and "transplanting" it into a sick person's colon can populate the sick colon with healthy microbes.  And it seems to really work when all else has failed.

Next time I see my doctor, I'll be asking about this. (Is that how you know you're at the end of your rope?)

Simponi: Not A Moment Too Soon

Just last month, Simponi became the newest biologic to be approved by the FDA for ulcerative colitis. 

And as I'm in a downward spiral of a flare, I'll be switching to it as soon as my insurance approves it.  (Or, I should say, IF my insurance approves it...please, please, please.) I've been injecting two Humira pens every week; Simponi will be one syringe every month. So that's nice. But the real question is, "Will it work?"

Let's hope so. I'll keep you posted. 

The other new development (or at least, new to me) is that there's a blood test to see if you've built up antibodies to Humira.  It's really expensive, so I'm skipping it since it's pretty obvious the Humira has stopped working, but it's nice to know that option exists.

And finally, for anyone else pregnant/breast feeding and on biologics, my doctor is telling me to continue to breast feed when I switch to Simponi.  He says that if the drug could have an effect orally, we could take it by mouth, but it's very fragile and will not pass to baby. Again, let's hope so!

SCD-safe Snacks, Part II

I love finding easy things that are SCD legal in the grocery store.  In this previous post, I told you about a couple stand-bys I love. Here are a few more snacks that almost fit SCD requirements, so they're my cheats lately:

Cliff's Kit's Organic Chocolate Almond Coconut Bar: These are a lot like LaraBar in the fact that they use dates to create their sticky, sweet base.  The cocoa in these bars makes them illegal for SCD, but everything else is okay. Plus they're addictively delicious; I buy them by the box.

 
 




Go Raw's Super Cookies: I buy these in Lemon and Ginger. They make other flavors too, some better than others (Pumpkin was not a fave for me). Don't expect cookies, but they have a nice crunch, a good flavor, and are SCD legal.

Wonderfully Raw's Cocoroons are delish, but they use maple syrup as a sweetener, so they're not SCD legal. I still eat them because they taste awesome and they don't feel as evil as some other options.  Vanilla Maple are my fave with Lemon Pie close behind. Cocoa Nibs...surprisingly not as good. And the Brownie are "meh"--I think I have higher standards for chocolate flavored snacks.

So those are my indulgences lately. Let me know if you've found some good, pain-free snacks!

Reboot!

Two months already??

 

I'm back! Baby is two months old, so it's about time I get back to it.

Here's what's been happening colitis-wise...

• Around delivery, I was flaring mildly (after tapering off oral prednisone and going off Humira to prevent infection while on bed rest after the water breaking).
• I restarted Humira when the babe was a few weeks old, 80mg every week.
• I restarted hydrocortisone enemas and Cortifoam (one in morning, one at night) when delivery mess healed (about 4-5 weeks postpartum).

Things are awful.  Tons of blood, frequency, pain, urgency.  I think it's exacerbated by the fact that the darling babe sleeps two hours at a time, so I'm not able to sleep at night.  Most of us have increased inflammation with lack of sleep, right? It sure feels like I do.

It's also been a lot harder for me to stay strict with Specific Carbohydrate Diet.  If any of you have tried it, the diet requires a lot of preparation and work, and I just don't have the energy right now.

The GI is making me take a C-DIFF test before we change anything. (Anyone else take a million of these per year? So annoying.)  It sounds like we'll be switching biologics if possible.  But I'm at the point where I'd really consider j-pouch surgery.

Any experience/advice with the surgery is welcome!

Welcoming...

Marcus Reid

March 18, 2013

5lbs 0oz, 17"

After 8 days on hospital bed rest (due to pPROM), Marcus was born at 33 weeks, 5 days.  Because my water was broken, we had a schedule induction at 34 weeks anyway. 

Because I had a solid week in the hospital before delivering, Marcus was able to benefit from two steroid shots (for lung development) and two courses of antibiotics (run at the same time).  When he was born, he didn't need any breathing support and, aside from being small, was healthy.  He did spend a week in the NICU to be sure that his weight was following an upward trend.

Some of you might also experience preterm labor, so here were my big take-aways:

On bed rest:

• Every hour extra that you can keep that baby inside, the better. We all know that, but when you're on bed rest, reminding yourself can be so helpful. 
• If you experience pPROM like me, take a probiotic during the antibiotic course.  My flare didn't get dramatically worse this time, and I attribute that to this probiotic capsule, Ultimate Flora.
• Ask your friends and family to bring in outside food for you.  Life on bed rest is dull enough without eating the hospital's roast turkey and string beans for every meal.  Treat yourself to little indulgences.
• Start a project.  I began a baby book and continued a knitting project.  Seeing the progress of both of those projects made me feel a little less useless.
• Don't watch TV.  This is my general rule when hospitalized anyway, but it's especially true when you can't leave the bed.  Daytime TV will make you feel brain-deadened and depressed.  (Ok, this is totally subjective!  If you love Billy Bush and Steve Harvey, never mind!)

On welcoming a preemie:

• Breastfeeding is a challenge with a little babe (so sleepy!), but be diligent about pumping, because as the baby grows, it will become easier and you'll want the supply to be there. (8 times a day for 20 minutes...it's a goal, not always possible.)
• Ask your hospital to speak with their lactation consultants if you're struggling.  The advice mine gave was truly invaluable.
• The day you are discharged and go home, leaving your baby in the NICU, will be the worst day of your life.  But the next day will start a new routine, and then it's just life.  My hospital had a support group, and it was very helpful for me--I imagine many other hospitals provide this support as well.  Seek it out.
• If your baby is anything like mine, don't expect more than 2 hours' sleep at a time.  They're just too small to have the energy stores to go very long between meals.  (This might be different if you supplement with formula, but I'm not doing that.)

 Overall:

• Epidurals are amazing.

I need to thank those of you who offered words of support during this stressful but joyous time.  While I took forever to update you, I did see your comments and messages, and I was so touched by your thoughts.  Marcus's health at birth was far better than what the doctors had expected, and I can only think that part of that is due to all the thoughts and prayers supporting him.  Thank you.

 

Here We Go...

Well, I was warned from day one when my GI said, "You'll probably miscarry, so don't freak out." (Yes, he really said that.)  So I expected that my pregnancy wouldn't be typical.

And then when I was hospitalized, everyone told me I'd go into preterm labor since I had active UC.  They were right.

At 3am on Saturday morning, I woke up feeling like I might be peeing a little bit!  After going to the bathroom and feeling like things were still kind of leaky, I started Googling.  Lots of women talked about having little pee leaks later in pregnancy, so I tried to convince myself that's what was happening and got back in bed.  But every time I shifted weight, it felt like I was continuing to leak a little.  (I'm telling you these lovely details because I really had never heard of this happening before, and would have appreciated a detailed account!)  By 7am, I knew that I was either going to have a really annoying final 2 months of pregnancy (peeing my pants constantly) or my water was broken. 

I paged my OB's office, and they told me to go to triage at the hospital.  After a very quick internal exam, they confirmed immediately that my water was broken.  At 32 weeks and 3 days, the doctors decided to give me two shots of steroids to develop the baby's lungs and begin two courses of IV antibiotics.  My GI suggested Gentimicin and Ampicillin as the least dangerous for IBD.  The goal is to keep the baby inside and prevent contractions until 34 weeks. 

At 34 weeks, they will induce me, because at that point, with low fluids, the risks to the baby begin to outweigh the benefits of keeping him in.  (Risks include infection or him crushing the umbilical cord.)

So that's the latest.  Here are my conclusions/the lessons I learned about all this:

• Apparently active UC disease can really mean preterm labor, just like the docs and research say.  
• If your water breaks, the baby can stay inside (and the fluids actually replenish!), but there are risks of infection to the baby because the membranes are broken and bacteria can get in.
• If the water is broken and you're close to 34 weeks, my docs won't stop labor if it begins.
• But if you can make it to 34 weeks, the baby is in pretty decent developmental shape (though he will have to spend time in the NICU).

Just sitting in the hospital bed now, trying to stay relatively horizontal because, "Gravity is not my friend" when it comes to contractions.