So, Belladonna is old school.  It has many uses, many names which include “Deadly Nightshade”.  It literally means, “beautiful woman” in Italian because drops made from the plant were used to dilate women’s pupils (considered attractive back in the day).  Although it is highly poisonous, it is very useful in medicine when compounded properly.  It’s used a lot for gastrointestinal problems like motion sickness and can be used as an antispasmodic to treat IBS and Crohn’s disease.  One compound is used to treat Parkinson’s, and others are used for heart resuscitation.  In my case, it acts as a muscle relaxant, helping my dyschezia (difficulty in pooping as a consequence of long-time suppression to defecate), anal spasms, it also helps with pelvic pain, reduces my trips to the bathroom, and helps me empty!   According to Wikipedia, in the past, when combined with opium, it was used as a “flying ointment” to get witches to their brew-ha-ha’s.  Seriously, look it up!  So, aside from hindering my mode of transportation, not being able to get this has resulted in increased rectal pressure, multiple trips to the bathroom, anal bleeding from said bathroom trips, soiling myself at night, not sleeping b/c I have to get up 3-4 times a night to poop, incomplete emptying…the list goes on.  So, basically, back to my crappy “normal”.

I can’t get it because there’s a shortage of the beautiful lady.  However, before (and I’ve only had one rx, by the way) it was no easy feat to acquire it either.  I felt like such a druggie calling all these local pharmacies and getting turned away because, “it’s a class two drug.”  Class one drugs are mostly your standard illegal drugs that they consider to have no or little medical use and are primarily used as a recreational tool to get you high.  Class one drugs include LSD, marijuana, “magic mushrooms”, meth, PCP, etc.  You get the drift.  (My research from the DEA’s website.)  Class two drugs have a use medically, but are narcotics like Dilaudid, Ritalin, OxyCotin, Percocet, etc.  You get the drift. Most of us here have had Dilaudid or some form in an IV drip after surgery or while hospitalized for pain.  It has the effect of getting you “high” but is such a useful tool for pain, it is still used.  Enter my suppositories.  The doseage is 16.2 mg of belladonna and 30mg of opium.   I should mention that in my research I found that belladonna can also be used as a recreational drug that produces hallucinations and delirium.  However, it’s poisonous and generally not worth that attempt.  I will admit, the first suppository made me kinda giggly and “loosy goosy” but had no ill effects the next day, so it’s not something one would use for a “high” effect.  However, it did make me super  happy because it helped me poop and relieved my pain and urgency.  Plus, after getting drug-induced lupus from man-made drugs, I was eager to try something natural.   And, it helped! After five years of trying, post surgically, to figure out what was wrong with me and to then find something so simple that helped and may help me live a more normal, productive life, and avoid surgery no. 8, I was ecstatic!

So, the first rx I had was a feat to have filled.  I eventually had luck with my mail order pharmacy who couldn’t imagine why I’d had such trouble in the first place.  One catch-legally, Dr. Shen can’t write me more than a month’s supply (b/c it’s class two), and it can’t be called or faxed in-has to be mailed in, by me…Who lives in Texas.   Dr. is in Ohio…hmmm. So getting refills should be interesting.  And it has been!  They faxed one in and that was denied, but I called Dr. Shen’s office and they are awesome and mail it to me so that I can then send in to my pharmacy.  I should mention that at this point I’ve been without it for two weeks and am crapping myself regularly and getting desperate.  Life without pain and pooping all the time is SO nice!  So, today I get a call from my mail order pharmacy…they can’t get it. UGH!!!  So, I call the manufacturer=shortage of belladonna.  I was shocked b/c I thought the issue had always been opium.  Anyway, I’m trying again to get it from CC pharm, but this will be the third (the other two were destroyed b/c they couldn’t be filled) rx for this in a month from me trying to get my medicine, so who knows if he can even write me another one legally.

So, is it just me, or is this totally ridiculous?  That I’ve finally found something so simple that helps, and I can’t get it because of regulations and supply problems (probably related to those regulations).   I can easily get something that could cause cancer, lupus, tuberculous, infections, the list goes on, but something with essentially no side effects I can’t get.  That makes perfect sense.

I’m going to try to find an alchemist or someone who can just make it for me and hopefully not poison me.

The lengths we go to for health.

These posts might also help out:

• December 8, 2010 -- Cleveland Clinic, Day 1 (6)
• September 12, 2010 -- I suck at being sick (24)
• August 5, 2010 -- Crohn’s…Again? (7)
• November 10, 2009 -- Just Dance! (8)

Dr. Bo Shen

Well, I finally made the pilgrimage back to Cleveland Clinic (CC) to see the famed “King of Pouches”, Dr. Bo Shen. As one involved in the J-pouch/IBD community, I had, of course, heard of Dr. Shen before. He’s sort of the last desperate act for a lot of people who come from all over the world to seek his counsel. I decided to go after a friend of mine and my mother’s met with Dr. Shen, e-mailed me and said, “Liz, you have to go. If your insurance doesn’t cover it, I will pay for it. He’s that good. He can help you.” So, by divine Providence, our new insurance did cover Dr. Shen, and I made an appointment immediately. When I called in October, his first available was January 18th. I was a little disappointed to wait that long, especially after developing the lupus issues, stopping Humira and feeling at a loss for IBD/J-pouch management, but enter more divine Providence. A friend I met, also through the IBD community, had her surgery at CC and was a patient of Dr. Remzi’s, a colleague of Dr. Shen. So, she got me Dr. Shen’s e-mail. He got back to me…the same day! A random patient he’d never heard of, never had a referral from, AND he offered to get me in sooner. So, here I am, writing about my appointment yesterday, and although it was a long, exhausting day of tests and appointments, (twelve hours to be exact), I feel so thankful to be in the care of this expert.

I arrived at 8:00 a.m. yesterday morning and checked in for my pouchoscopy. Naturally, I’d done my “prep” by drinking only clear liquids the day prior-no food. This is a struggle for me sans Prednione, but damn near torture after being on ‘roids for almost two months. But…I did it. The scope was my first meeting with Dr. Shen. I found him friendly, cheerful, and very informed. We talked a bit about my history, they loaded me up with Demorol (which I’m typically allergic to, but didn’t bother me yesterday) and Verset, and although I was loopy, I was able to watch the scope on the screen, watch him take the biopsies, and ask him probably the same question ten or fifteen times. When I was wheeled back into my curtained area, Dr. Shen came back to give me the images from the scope and review them with me. At that time, still under the blissful spell of Verset, I declared, “Dr. Shen, you are J-pouch Jesus. This is what I shall call you.” He cracked up.

After what was probably a much more lucid conversation with my mother, he scurried off to his next ass-reaming. He instructed me to go have several tests, “right now.” So, we went to his scheduler, and I went immediately to what I referred to as my “ass trajectory” test, although it was actually called marometry test. I lied on my left side, the typical ass-exam position, while a doctor placed some kind of sensors around my “hole”, then threaded a tube up my anus to my pouch. First, I did a few squeezes to test my muscle tone, then he inflated the balloon and asked me to tell him when I felt like I needed to have a bowel movement. I lied there for a while, waiting to feel something, and he asked me two or three times, “Do you not feel that yet?” I said, “Well, I can tell something is there, but I don’t feel like I have to go to the bathroom.” I told him, “After years of training myself to not go, I think my sensations are a little off.” Turns out, that’s true. Dr. Shen suspects I have dyschezia, which literally means, “difficulty in defecating (usually as a consequence of long continued voluntary suppression of the urge to defecate)”. The doctor doing the procedure moved the balloon down a bit and man I could really feel it then! It felt like a pain on the left side, similar to what I get when my anus spasms. I eventually was able to push the balloon out. I then wiped my ass, pulled up my pants, went to the bathroom and headed for the lab. There, I had several vials of blood drawn and was given a cup for a stool sample. Mom and I trotted off to building H to wait for my barium enema test, but they couldn’t get me in until 4:00 p.m. and they were running behind. My appointment (back in building A) with Dr. Shen was at 4:30. After not eating for two days, I finally hit a wall in the waiting room. I hadn’t been allowed to drink or eat after the scope in preparation for the barium test. Fierce bitchiness set in and I said, “Okay, screw this test. I’m done not eating. If I don’t get something to drink or eat in the next ten minutes I’m going to pass out.” So, we said sayonara to the X-ray lab and headed to the nice cafe nearby. I scarfed down a small portion of bland pasta and a few bites of yogurt-just enough energy to get me through my appointment with Dr. Shen. I wanted to be able to think and be semi-coherent during my appointment with him, and two days with no food, and a full day with no fluids does not a coherent no-coloned girl make.

We spent a good deal of time talking with Dr. Shen. He’s surprisingly informal, which might be the secret to his success. He gets you in when you need to see him, he doesn’t have someone make copies of your records, you just bring what you have and you sit and flip through them together. This is really nice because medical records are not always correct. Typos and misinterpreted dictation can lead to confusion, so it’s nice to be able to go through that with your physician. We also watched my defecating pouchography (x-ray video of me pooping) and he saw some pouch anomalies. He threw out about four possible theories for my problems. Two were functional (some sort of buldge around my anus/J-pouch that is too close to my vagina), a possible fistula from my J-pouch to vagina (eww). He is testing me for IgG4, autoimmune pouchitis, and then of course trying to determine if I do have Crohn’s. My pouch looked good in the scope because of Prednisone, so it didn’t look as nasty as it did during my last scope. I go today for the barium enema (more not eating) and another appointment with Dr. Shen. I really appreciate how thorough he is with his patients. I think it’s so refreshing that he really understands that it’s important to cram in as much as you can while you are here. He also told me that I should be tested for anklosing spondylitis, a concurrent condition that can occur with IBD. He also mentioned that I need to switch to an estrogen-based birth control pill.

What I’m listening to: De Stjil, White Blood Cells, and Elephant by the White Stripes.

Where I’m eating for my next meal: Mallorca, fine dining Spanish in downtown Cleveland
What I’m thankful for: All the kind people, my mother, J-pouch Jesus.

Cutest story: Our bellman, John, is also a pastor, and when we came down to get in the “ride” he’d arranged for us, he outstretched his arms, motioning for mom and me to come under each one, gently hugged us, bowed his head and began to pray for “Sister Davis.” I didn’t apprise him of my new surname. I figured God was privy. After the prayer, we turned around to see our car was a white stretch Lincoln towncar. Mom was crying from the emotional prayer, I was cracking up that we got a limo. We had a lovely conversation with our helpful driver. Nice way to start the long day.

These posts might also help out:

• November 10, 2009 -- Just Dance! (8)
• February 11, 2011 -- Belladonna Wars? (7)
• August 5, 2010 -- Crohn’s…Again? (7)
• February 25, 2010 -- Commenter with Questions (13)

These posts might also help out:

• February 11, 2011 -- Belladonna Wars? (7)
• December 8, 2010 -- Cleveland Clinic, Day 1 (6)
• August 5, 2010 -- Crohn’s…Again? (7)
• February 25, 2010 -- Commenter with Questions (13)

These posts might also help out:

• July 15, 2009 -- Don’t Ask, Don’t Tell (12)
• November 10, 2009 -- Just Dance! (8)
• February 11, 2011 -- Belladonna Wars? (7)
• December 8, 2010 -- Cleveland Clinic, Day 1 (6)

We have a long comment from Cynthia C. and she has a handful of really great questions for the jpouch community. Would you take a few minutes to read her post and see her questions at the end.

Thanks so much!

Megan & Mark

# Cynthia C. Cynthia C. says: February 23rd, 2010 at 11:52 am

Hello Everyone, My name is Cindy and I was diagnosed with Ulcerative Colitis in October of 2009. I first started having symptoms in February of 2008 while I was about 7 months pregnant with my son. I thought the mucus in my stool was a result of being pregnant with a very large baby. I felt fine, and had no other symptoms so I really didn’t have any clue I was developing Colitis. I’ve been healthy my whole life, active in sports and exercise, and at the time I had been a vegetarian for the last 12 years. I started eating meat again around the time I first noticed mucus in my stool. After I had my son, I noticed the mucus came back about three months later. But still no other symptoms. That went away, but in the fall of 2009 the Colitis came back and it was no joke this time. First it started with mucus. Then I began to notice I started losing weight and finally, I began to get really tired. I was starting to get worried, because trips to the bathroom were becoming more frequent and hard to hold. The next and scariest thing that started happening was the blood. I began to bleed little at first but by September of 2009 I was bleeding a lot. I began the process of “freaking out” with the idea that I had colon cancer. I can’t even tell you how scary it is to ponder the cancer cloud hanging over your shoulder. I would just look at my family, my new son and become so utterly depressed. My husband began insisting that we make an appointment with a doctor to really find out what was wrong so I could stop this fantasizing of the worst. I knew I was secretly avoiding this because I was so scared to find out what I had. Finally though, I scheduled an appointment and had my first colonoscopy done. I was so scared to go through with the colonoscopy! It turned out not to be so bad, but man, I’m sure a lot of you already know how disgusting the laxative is to drink. It’s the worst part. I never finished it and it turned out to be fine. We were told the results of the colonoscopy right after the procedure and that’s when I found out I had colitis. No cancer! It’ didn’t hit me right away and I really don’t know if it still has, even though I’ve been through the pain and suffering of having Colitis. My GI doc prescribed Asacol and Prednisone. After three weeks of suffering on Asacol, we discovered I was having a serious bad reaction to it. I became so incredibly sick. The colitis got worse, I could barely walk, I began seeing these intense spots through my eyes, my teeth looked like they were becoming transparent, I was losing weight, and then my liver became inflamed. Finally my GI realized it was the Asacol and I was then put on 6-MP. What a disaster 6-MP was. It had the same effect the Asacol had on me. Suddenly my life was at a standstill. Now its Christmas time and at this point I had been extremely ill for three months. My husband had almost used up all his vacation at work, and my daughter and son were feeling the effects of my illness. The whole family literally became depressed. We were all just so scared and i know I was definitely suffering from depression. I couldn’t spend any time with my 1 ½ year old son and he wanted me so badly. I’m a stay home mom, so he had been used to being with me every day. I know that Prednisone was having an effect on my moods and ignited the depression in me. I got to the point that I couldn’t even laugh anymore. It was like there was a block on laughter in me. Finally, my GI took me off the 6-MP because again my liver was inflamed. I now weighed 114 lbs (I started off at 138) and it’s now January of 2010. The prednisone I was on was horrible. I couldn’t sleep at night and I was so shaky all the time. To top it off, it wasn’t even holding the colitis at bay. By mid January things were getting bad. My husband and I began discussing surgery. I decided I didn’t want to be on meds anymore. This was extremely important to me. I don’t want to take medicine my whole life and then find out 1) they don’t work anymore or 2) I’ve developed some other disease from them, and 3)I wasn’t about to take Remecaid after reading up on all the side effects. So, we scheduled an appointment with the surgeon and set a date to proceed. I couldn’t believe I was about to do this. But if it meant no more colitis, then it’s worth it. I’ll do anything to take this feeling away!! My surgery was scheduled about a month away. At this time I was so sick, it was almost impossible to get out of bed. I was now 100 lbs. I looked like a skeleton and I had dark circles under my eyes. My surgeon decided to bump up my surgery ASAP so now I was scheduled for it to take place in one week! We went over different options and decided on a permanent illeostomy, which gave me the option of getting the j-pouch surgery when I was back to normal weight and my body was healthy again. I decided to just give the “bag” a chance. It was a great relief to know I could go back and get the j-pouch surgery at any point in my life. The week before my surgery I was so scared and nervous. I could not fathom that this was happening to me. I was very excited to get the surgery done, but that emotion was mixed with an intense fear. I’ve never been in the hospital before except to have my two children, so I was really frightened. I was also feeling this strange loss of the fact that I would no longer have a colon! My colon, the thing I was born with, was just going to be taken out and incinerated! Weird. Anyways, the surgery was not as bad as I imagined. The pain was intense at times, but nothing like having a baby! I just upped my epidural dose or took more pain pills and voila! The pain was gone. Being in the hospital for a week was probably the worst part. Even though I had some really awesome nurses, (and one HORRIBLE one) it was so awful being stuck in the bed and not able to move around. And then there was the BAG. I just kept reminding myself that the colitis was gone. My colon was gone too. Dealing with a bag of poop was okay compared to not having a life with my family. I was lucky too. A woman next to me was dealing with cancer. And people in Haiti were suffering big time. Now it’s been three weeks and I feel pretty good. I’m still sore, but I can go places, clean the house, take care of my toddler Finn, and laugh again! My family is back on track, no more sadness in the house, and I can drink coffee again! My husband was an unbelievable support. He not only held down the fort, but took care of our toddler, my 17 year old daughter, worked two jobs, and continued working on an MFA, AND took care of me the whole time. I wish I could give him a vacation to Mexico with unlimited fish tacos and beer. I’m on a low residual diet for a while and can hardly wait until I can eat regular foods and have some wine! The most wonderful feeling is not feeling the colitis in my body. It’s incredible. And the best part, is it will never come back! I’ll be off steroids in one day. I didn’t find that changing the bag was all that difficult. I can hardly wait to find a bag that feels comfortable and suits my needs. Clothing though is becoming a huge problem. My pants close right over the stoma. I need advice what to do about this! I’m not about to wear jeans that go up to my waist! Do they even make those anymore? Plus, I’ve lost so much weight nothing fits and I don’t want to buy anything until I gain my weight back. So thanks to anyone who took the time to read my story. I’ve left out so much believe it or not! I have so many questions to ask all of you- I’m hungry for advice! I appreciate any responses.. Thanks again!

1)Anyone have advice on some sort of “cover” for my bag to not only hold it in place but to conceal it a little better. It’s so annoying how the plastic clasp can hang between my legs. I’m looking for just some sort of band.

2)Advice on clothes!

3)What type of bag works best for you?

4)When can I expect to feel normal, with no more pain from surgery?

5)Did any of you have back pain after surgery? My back is killing me!

6)Should I expect a weird feeling after I stop taking steroids? My Doc said I may feel strange, even though I’ve weaned them off. Okay, I’ll leave it at that for now.

Sorry this is so long! Thanks! Best, Cindy

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• November 10, 2009 -- 6 Months Later: Jaypouchirifical (22)
• November 10, 2009 -- Just Dance! (8)
• December 8, 2010 -- Cleveland Clinic, Day 1 (6)

Prior to my diagnosis of UC and, subsequently, Crohn’s, I was a devoted and passionate dancer.  It was my “thing.”  It was also one of the first things to go when I got too sick to be that physical.  For a long time, I was truly devastated that I couldn’t dance anymore-and I really couldn’t-not the way I had my whole life, not the way I was best at, not the way I loved.  I was actually teaching jazz when I was 17 and totally chock-full of Prednisone.  I would go into the tap room because it had the cool tile floor during my breaks because the Prednisone made me so hot.  Eventually, Crohn’s kicked my ass.  I was able to go to Europe for a few weeks in the summer after my last year of teaching dance, but as soon as I landed in the states, I was admitted to the hospital for a week for a flare.  The following years were tolerable.  I wasn’t teaching or taking classes, but I was in college, doing well in school and that occupied me enough to serve as a distraction.  Don’t get me wrong, I’d occasionally bust it out in my dorm room when my roommate was away, but it was nothing like it used to be for me.  About a year later, my disease progressed rapidly and severely.  I tried several treatments, nothing worked.  Eventually the bleeding and fatigue got so bad that I physically couldn’t leave my apartment, could barely eat, and stayed mostly in bed.  There was no dancing in the living room then.  Soon after, I made the decision to have the J-pouch surgery, which I maintain is one of the best decisions I’ve made in my life.  Although I felt incredibly better after getting the diseased colon out of me, things were a struggle for the first year.  About 9 months after the final surgery, my doctors discovered I had Crohn’s. I started Humira and a few other drugs and am now in my second year of remission and doing great! I am also proud to report that I attended my first dance class in TEN years tonight.  (Has it really been that long?)  Let me tell you, I am hella PROUD of myself for A) going back, B) keeping up with a room of 18 year olds, ten years younger than me, and C) for doing all this with my rockin’ Jpouch and Crohn’s disease.  For a long time, I remembered thinking I’d never dance again-that the diseases would take away all joy from my life because I was too sick and exhausted to live my life.

This post is a reminder to keep fighting.  Health is a wonderful thing we often take for granted.  It is also a reminder to challenge yourself, get out there and do something fun.
I may have a little trouble walking tomorrow (I’m a smidge out of shape after 10 years), but you can bet your ass I’ll be back in that studio leaping, dancing, and being me.

These posts might also help out:

• December 8, 2010 -- Cleveland Clinic, Day 1 (6)
• August 5, 2010 -- Crohn’s…Again? (7)
• February 25, 2010 -- Commenter with Questions (13)
• December 29, 2011 -- Loss & Gain (2)

So what is your policy regarding IBD in the workplace?  It’s certainly nothing to be ashamed of, and I’m oddly proud of it, but I’ve lived and learned and am, for now, deciding to remain a mystery

These posts might also help out:

• August 5, 2010 -- Crohn’s…Again? (7)
• November 10, 2009 -- Just Dance! (8)
• February 11, 2011 -- Belladonna Wars? (7)
• December 8, 2010 -- Cleveland Clinic, Day 1 (6)

But when I started taking it, it made me feel better and I had almost no side-effects. I had some difficulty sleeping and I didn’t feel full as quickly (my satiation point seemed to disappear somewhat) but that’s it. When I was in the hospital, I was on ridiculously high amounts and it really didn’t effect me much. I was concerned because it looked like I would be taking it once a year or so for about a month, but the physician told me that taking it that infrequently probably didn’t have much effect long-term.

I’m not saying that Prednisone is pleasant and I know that some people have absolutely awful experiences with it. I just want to point out that it can make you feel a lot better and if medically it makes sense for you to try it, know that it may not be as awful as you anticipate.

These posts might also help out:

• December 8, 2010 -- Cleveland Clinic, Day 1 (6)
• February 25, 2010 -- Commenter with Questions (13)
• November 10, 2009 -- Just Dance! (8)
• February 11, 2011 -- Belladonna Wars? (7)

Excellent Resource:  10 Key Questions about UC

Also, here is a good link to read more about what is UC:  Online Book about UC.

Image via: Lifespan.org

These posts might also help out:

• February 25, 2010 -- Commenter with Questions (13)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• February 11, 2011 -- Belladonna Wars? (7)
• December 8, 2010 -- Cleveland Clinic, Day 1 (6)