what the heck is pouchitis?

Since my most recent diagnosis of pouchitis, I have been trying to find the best ways to handle this situation. When I say situation, I mean, how to handle going to the bathroom what seems like a million times a day and night again, the nausea and the drugs I’m on again.

Many people might have a misunderstanding of what pouchitis really is. I know I was quite undereducated about pouchitis until I went to visit my GI, Dr. Korkor again. My surgeon never really went into detail about the chances and precautions of pouchitis, so therefore I never really considered it much of an option. I also just thought pouchitis was like a small infection of your pouch, not actual inflammatory bowel disease, or inflammation, of the pouch itself.

Dr. Korkor shared some great insight about new findings with pouchitis along with iron-deficiency anemia, which I also have.

At my iron infusion last week.

At my iron infusion last week.

Iron IV

Iron IV

Pouchitis is literally defined as inflammation of the ileal pouch (my new colon, surgically created out of my small intestine) which is created in the management of patients with ulcerative colitis, indeterminate colitis and some other rarities. Pouchitis is the most common complication among patients with ulcerative colitis who have undergone restorative proctocolectomy with ileal pouch–anal anastomosis. Like ulcerative colitis, there have been many speculations about what can actually cause pouchitis, but the determinate cause is still unknown. The incidence of an episode of pouchitis can occur at any time after the surgery. Dr. Korkor told me that since my colitis was so severe; my chance of getting pouchitis was at least at 50%.

Some facts about Pouchitis:

  • Evidence suggests that an abnormal mucosal immune response to altered microflora in the pouch leads to acute and/or chronic inflammation.
  • Patients with pouchitis can develop a wide range of clinical presentations, including increased stool frequency, urgency, tenesmus, incontinence, nocturnal seepage, abdominal cramping, and pelvic discomfort.
  • Although bloody bowel movements are uncommon in typical pouchitis, patients with IPAA with or without pouchitis can have iron-deficiency anemia. (That’s me).
  • As the majority of patients who develop acute pouchitis do so within the first year post-IPAA,the probiotic VSL#3, which contains viable lyophilized bacteria with 4 strains of Lactobacillus, 3 strains of Bifidobacterium species, and Streptococcus salivarius subsp. (More on VSL #3, which I am currently taking, below).
  • As medical therapy for pouchitis is largely antibiotic-based, management of antibiotic-dependent and antibiotic-refractory pouchitis remains a challenge.

SO THANKS to my surgeon for going over that with me…not.

But, I’m not about complaining about the present (at least not on here, my family and friends might say otherwise 🙂 )

I knew something was off because I was starting to have some blood when going to the bathroom again a few weeks ago. I also noticed that I am going to the bathroom quite often. At least twice as much as I should be (which is about 6-7 times a day). My sleeping is affected again, because similar to my colitis, my pouchitis is very active at night. My night time is pretty bad and VERY interrupted. It’s frustrating, because now I have a job that I have to be at in the morning. BUT, I have lived like this for quite some time, so I am used to it.

I do have a small amount of pain here and there when I go to the bathroom, but nothing like when I had UC. Mostly cramping. My biggest struggle is with nausea and fatigue. I get waves of nausea so bad; you would think I was on a sailboat.

If I try and hold it for more than 10 minutes, the familiar UC panic and severe cramps return.

Normal flares of pouchitis can last anywhere from 2 weeks to who knows when. But I am already starting to feel better, with the designated first step treatment for pouchitis, with cipro, flagyl (which I’m supposed to be taking, but am taking a break from, because flagyl makes me extremely nauseated) and a probiotic called VSL #3, which is in powder form and is super gross. It contains LIVE bacteria, something like 950 billion strains of it. It is also a freeze dried “dairy” probiotic, which is even grosser. I tried it in yogurt. No. Tried it in chocolate milk. NO. So now, I blend it into a soy chocolate smoothie every night before bed. That helps because it eliminates the chunks (I hate that word) and it takes my mind off the fact that I’m drinking living bacteria.

VSL #3

VSL #3

3795b

Since I am also severely iron deficient and my GI advised me against taking oral iron, I am going to be back in the hospital in the infusion center every 8 weeks to receive iron infusions. I had my first one the other day and it did help a little, but I am still just so tired all the time.

I’ve also needed to adjust my diet again. No alcohol, which has always been my worst irritant, no fried food, no salad, raw vegetables or fruit, cut back on dairy, anything spicy, marinara sauce gets to me a little as well.

Back to plain, plain, plain with a side of extra carbs. Bread, pasta, rice, potatoes, crackers, salty potato chips. Those are some good go-to’s. I’m not the best follower of the rules, but I’m going to start trying a little harder, since my sleep is as affected as it is.

My friend and fellow editor of Companion Magazine gave me some advice over twitter as well. I noticed that he has been doing quite well with his jpouch and he is about 2 weeks in front of me in terms of post-op time. Rasheed eats the regular 3 meals a day, and a small snack in between. I like to eat small, smart snacks throughout the day (when I say smart, I mean, IBD smart, not normal person smart). Rasheed also does not drink alcohol and absolutely stops eating before 9 p.m. Rasheed shared with me that he is going to the bathroom about 6-7 times per day. More advice from Rasheed, you can follow him on twitter @rasheedclarke.

I’ve had a few people ask me if this changes my mind on whether surgery is a cure for colitis or not. Nope. My mind is not changed. I AM CURED OF COLITIS. I NO LONGER HAVE COLITIS. I NO LONGER HAVE A COLON THAT HAS COLITIS. THEREFORE, I AM CURED.

That seems pretty simple to me.

Was there a chance that I would still have problems with symptoms of IBD after having my colon removed? Sure. I was aware of that. I was also aware that, again, I WOULD NO LONGER HAVE COLITIS.

I knew my life would never be the same. These are the cards I was dealt. I have to do the best that I can to play the hand that was given to me. That’s why having this blog, my magazine and informing others is so important to me. I now have pouchitis. I can sit and whine about it all the time (which I kind of have been doing, but, I’ll get over it) or I can figure out the best way to educate myself and others about the topic.

If you have any other questions about life with pouchitis, or pouchitis in general, you can comment on here, email me or tweet me @brklynbouncer!

Also, here are some informational goodies I found online:

http://www.mayoclinic.org/diseases-conditions/pouchitis/basics/definition/con-20036404

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093723/

Hope this helped some of you understand a little better!

P.S. I also had no idea that this forum for j-pouchers existed! So cool! If you have a jpouch or are planning to get one, or are just interested, definitely check it out:

http://j-pouch.org/eve/forums/a/frm/f/3251071921

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4 thoughts on “what the heck is pouchitis?

  1. I have been reading your blog and can’t imagine what you have been experiencing. Within the past few months I have experienced similar symptoms , but nothing as severe. I’ve noticed that some things upset me more than others and I have good weeks where I feel fine and then for a few days I will have the “episodes” . I am trying to keep track of what I am eating and see if that helps before I break down and see a specialist and have a colonoscopy done. My dad has colitis but not to the extreme you did. Is this a genetic thing?! As my mom has IBS.. Time will tell I suppose 🙂

    • Hi Nicole!
      I’m sorry to hear that you are having issues as well. Jpouches are tough! I always hear that the first year is hell, so I’m just trying to make it through! I do think that IBD is genetic, eventually they will prove it. Thought it doesn’t run in my family, if you have read past posts I believe the severity of my UC was caused by the undiagnosed parasites I contracted in Punta Cana. But, I know what you mean about having, “episodes.” Have you tried cutting all sugar out of your diet? I know it sucks, but it has helped me. Also, be careful of how many carbs you are eating. If you are eating a lot of bread and pasta like they tell you to when you have an ostomy/jpouch, that can actually “ferment,” in your pouch and cause nausea and irritation of the stomach! Dr. Bo Shen and the CC explained that to my parents and I after my scope, we had no idea. We should be eating a low to no sugar diet, light carbs and TONS of lean protein like fish, chicken and steak! I hope this helps! Stay tough. xoxo

  2. Hi there I would strongly recommend eliminating gluten from your diet and soy. Possibly dairy too as they inflame the intestines.

  3. I like reading about experiences with pouchitis. You feel alone because people do not understand UC or the feelings of being not 100% after everything we go through. I am lucky. I had my colectomy at UCLA in 1988. I feel like a pioneer or this. So happy to not have UC. In and out of hospitals for 8 years. My surgery was and is successful. Pouchitis just started about 4 years ago.after having UC the last thing you want is to see blood in your stool, unbearable gas, incontrollable leakage and no sleep. I gave pouchitis right now. Realized it was coming on and started treatment right a way. I had actually been doing amazing as I cut out sugar and white things switched to whole grain. Not whole wheat, less meat was eating nuts vegies roasted and did amazing. Went on vacation and ate regular and now have pouchitis. I do use probiotics and have for about a year now. Never tried the VSL. See Dr in 10 days.

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