Newbie Here: My Life with Bad Gas and Watery Poo

[fenway1971]

I guess I always knew I had IBD. My mom suffered from UC until she was cured with J-Pouch procedure. One of first to have it done in the 1980's. My memories as a child were of her, bed-ridden, occasionally hospitalized and dealing with side effects of Prednisone. Never thought much about my bad gas or watery poos because I never saw blood and the diarrhea never lasted for more than a few days at a time.

That was until 5 years ago, when at age 32, I had 6 weeks in a row of non-stop watery poo and dropped 15 lbs off my already skinny girth. I was 5'10 and a manly 140lbs.

Oh, and my abdomen was sore. Fearing appendicitis, my primary care doc sent me in for tests which ultimately led to visiting my gastroenterologist. After sticking a finger up my butt and noticing blood, he ordered a colonoscopy. And, wha la...there it was....sever inflammation of my entire colon. Looked like UC but biopsies suggested Crohn's Colitis.

I took meds religiously for 6 months (9 beastly Colazal's a day), altered my diet and got my self back to "K-1" or "K-2" on the poo scale. For those of you not related to me, I invented my own personal poo scale:

K-1: The perfect poo. A floating log and one wipe.
K-2: Looks like a poo but is soft. Requires 2 wipes.
K-3: A pile. Requires 3 wipes.
K-4: A watery, splashy mess. Requires 4 or more wipes.

Thinking I was tough and invincible - but really being stupid - I stopped taking meds regularly. When there were 2 or more days of K-3 or K-4 activity, I'd pop in a few pills. I thought my strategy was working well when my 2005 and 2007 colonscopies came back with only mild inflammation. I started exercising and put on 20 lbs to a respectable 160.

Well, I'm now paying the price. Last month, I went into regular K-3 followed by non-stop K-4 mode. Follow-up colonoscopy last week and colon is severely inflamed - as bad or worse than in 2003. Now on 12 colazal's a day, dealing with occasional soreness and cramping in abdomen and feeling generally depressed and fatigued. Can't get back to K-3 which is unusual for me. Doc says that if there's no improvement in 2 weeks, we might have to try steroids. Ugh.

I hate taking meds - makes me feel like an old fart - and I can't seem to focus on eating only comfort foods. While my diet is generally healthy, I still eat the occasional danger food even though I know it's not good for me.

I'm rambling - it feels therapeutic - but I think I'm just shouting out for help. For words of encouragement. I miss my K-1's. I know what I need to do but it's hard. Especially when those around me - except for good ole mom - just don't understand....

 

[Agent X20]

Welcome to the forum, Fenway. Lots of good advice and understanding people on here.
I thought I was doing quite well, but I'm mostly K3s and K4s!!!

 

[fenway1971]

How do you cope?
I struggle to get out of bed and drag my sore ass into the office. Fortunately, I have an understanding work environment. However, it's a client driven job that requires my being pretty much on call every day even when i do work from home. The stress also wears me down.

With current symptoms, I feel totally unmotivated. How do you get out of the funk?

 

[Guest]

hi Fenway, & welcome.

i think we all 'cope' in different ways. really bad days, i don't think i cope at all, but those around me say i do.. Crohns is so often a waiting game, we're either waiting (& hoping) for symptoms to abate, or to get some energy back, or for results/test/appointments.

stress & heavy expectations don't help at all with Crohns in general, especially when you're having a flare. is there any way you could take some holiday from work, and just take time to listen to your body, chill out..?

it is hard, when people in your life don't understand what it really feels like. i envy friends & family members who can plan things for future days, knowing they've got a good chance of jumping out of bed that morning feeling ok, and being able to carry out those plans. just simple things like that - that healthy people don't even think twice about.

huh.. i'm rambling now lol. anyway, welcome, and you'll find lots of genuine support & understanding here.

 

[My Butt Hurts]

Hi Fenway and welcome.
I can't remember the last K-1 I had. (What's the K for anyways?)
I also could put about 3 more categories between K-3 and K-4.
I just had an 8 wiper at Wal-Mart, and I still needed a shower.
I used to hate taking pills too, but I got used to it and decided that I would rather take 25 pills a day if it made me feel better. I feel like an old lady even more when I'm complaining about my ailments.
Feel free to keep rambling here, if it's therapy for you we don't mind at all.
I don't know what colazal is but it sounds like asacol. If they are similar, I believe that is one of the beginner type drugs. You might need something a bit stronger.
I just had a great (but short) 4 month remission on Humira. It was wonderful while it lasted.

 

[fenway1971]

Hi Dingbat and My Butt Hurts (two great names),

I'm feeling a bit better this afternoon. This forum is great - venting feels so good.

Colazal is same drug as Asacol - I had been on Asacol but it wasn't working so was switched to Colazal.

Ahhh....time off. My problem is that I have a demanding, client-driven job. I'm partner of an investment banking firm which also means I have to deal with firm-wide stressful issue in addition to dealing with client work. Hard to just disappear for a week or two and rest. That's my current conundrum but I'm doing my best now to work from home any moment I can.

An 8-wiper. I've had plenty of them. Need immediate shower afterwards.

Question for group - has the disease affected your dating life at all? How have your significant others helped?

 

[Creepy Lurker]

Reminds me of the infamous Bristol scale.

http://en.wikipedia.org/wiki/Bristol_Stool_Scale

 

[teeny5]

I had never heard of the Bristol scale...there I would say never below a 4, usually a 5 or 6. So, on the Fenway scale I am at K-3. K-4 if flaring for sure and a 7 on the Bristol.

The last time I had anything resembling the lowest on both scales it was kinda painful so I almost prefer the softer poo!

 

[teeny5]

Oh, forgot...I think my husband copes pretty well with me and my disease. He has to pretty much take up all the cooking and cleaning when I am at my worst. I just don't have the energy to do anything. The biggest thing affecting him I think is my new "diet." I just can't have the same foods we use to eat all the time...but I guess it has changed both our diets for the better. We use to eat fast food a lot and even if we ate at home it was always fried or spicy for sure.

I know I annoy him if I get to complaining too much. He doesn't say anything, but I can tell. Some days I just get so angry and fed up with feeling sick. He is really good about it though, he lets me vent! That is why I love this forum. Here I get the support I need from others who know what I am going through and it helps to have somewhere else to vent.

 

[fenway1971]

The Bristol scale! That's funny...never heard of it but it's exactly how I would rate poo. Because I never had 1, 2 or 3 on the Bristol scale, I never knew one could create that. LOL.

For those curious, the K is the first initial of my last name.

 

[mommy1st]

Hi Dingbat and My Butt Hurts (two great names),

I'm feeling a bit better this afternoon. This forum is great - venting feels so good.

Colazal is same drug as Asacol - I had been on Asacol but it wasn't working so was switched to Colazal.

Ahhh....time off. My problem is that I have a demanding, client-driven job. I'm partner of an investment banking firm which also means I have to deal with firm-wide stressful issue in addition to dealing with client work. Hard to just disappear for a week or two and rest. That's my current conundrum but I'm doing my best now to work from home any moment I can.

An 8-wiper. I've had plenty of them. Need immediate shower afterwards.

Question for group - has the disease affected your dating life at all? How have your significant others helped?

When I first started dating my husband I would never eat infront of him so that I wouldn't have to go to the bathroom, but I was very upfront about my health problems with him. At first he researched everything so he would understand what I was going through. Now he's great very understanding but he doesn't think of me as being sick which is great. He just thinks that this is the way I am and wouldn't expect me to be any different but he does do almost everything around the house yes cleaning even the toliet I couldn't ask for a better husband. He's the one who really keeps me going. He doesn't let me get depressed or feel sorry for myself.

 

[Promise77]

Ahh the dating years. They sucked! I tried being up front about my illness...I tried hiding it...I tried ignoring it (dont suggest doing that for too long!). I had one guy that I had dated for about 6 months break up with me BECAUSE of my disease. It wasnt even all that bad at the time but he said that it stressed him out! Can you believe that?
My husband is usually pretty good about things...he gets frustrated because he cant just fix it for me, but he takes care of me when needed. We have two little boys that I need help with too...our extended family (grandmas) are wonderful!

I have to say that I love your poo scale ...it make me laugh at loud...I had to read it to my husband (he didnt see the humor in it quite like I did).

Anyway...dating....if the person is worth keeping around...they will be understanding and open to learning about the disease! =)

 

[Promise77]

Wow..it was late when I wrote that post...I apologize for spelling and grammatical errors.

 

[kromom1]

Talk about supportive husbands, mine ranks right up there with the best. Last summer before I was diagnosed with CD, it was the middle of the night and I was up vomiting in the toilet when the diarrhea decided to come, too; unfortunately it went all over my PJs and on the floor! My husband (who is also an RN) didn't say a word as he help me get cleaned up, sent me back to bed, and then cleaned up the bathroom! He also spent the evening at the hospital with me the night before my first colonoscopy and helped me get down that delicious gallon of "colonoscopy cocktail" and emptied my potty-chair several times (I was connected to an IV and could not get in and out of the bathroom quickly, so spent the evening on a potty chair). He's an angel!

Hang in there Fenway1971. Love your poo scale!

 

[fenway1971]

Laughing is what it's all about.

I'm blessed too...have a new gf who is completely understanding and keeps me sane.

Still having K-4's and see the doc tomorrow.

 

[gadget71]

Fenway- I am glad someone finally put out a wipe scale. I am a K3 when feeling well and a k4+ when not. My wife probably wonders why we go through so much tp, but never asks or complains. In fact we just upgraded campers this year because our old one did not have a potty and I told her why I wanted to upgrade, she never questioned my wants/needs related to crohns. Having been my gf when I was first diagnosed and having been with me since nearly the beginning she has been way cool about it. Sometimes I know it's hard for the signif other to see when you are exhausted and they want to do things, but other than that she deals with the messes in the toilet, when I get up during the night to go, which I am sure disrupts her sleep also, and helps me find the nearest potty when we are away from home. All the things that other couples take for granted. If you have the right one, she will accept you for who you are and realize that your disease is part of the package that makes you special. Good Luck!

 

[fenway1971]

Glad I could contribute. Welcome to the forum. I just joined a few days ago when feeling down and it's a great site so far. People are genuine and have a way of keeping your spirits up.

 

[fenway1971]

I'm posting here more for my own benefit than anything else. Having posted questions, etc. all over this website since I joined last year, I've decided it's much easier to have one spot to diary my experience with this disease. It’s helpful to look back and learn from mistakes, keep a record of answers to treatment questions, see how great/bad I was feeling, etc. Feel free to comment or ignore. I'll post every few days/weeks when I feel like I learn something new or experience something different.

General well-being – I feel great today. Four weeks of mostly K-1 scale poops! Best I’ve felt in years.

Treatment – Met with GI and am beginning to kick up 6-mp to 75mg/day and reduce prednisone to 10mg/day. I started in Sept and dying to get off this nasty drug. In two weeks, I am scheduled to taper to a weekly regimen of 9/8/7/6…down to 1mg/day. Doc wants to taper slowly because (i) I’ve already been on prednisone long enough that few extra weeks won’t hurt and (ii) withdrawal symptoms from 20 to 15 were significant enough to give her concern (severe fatigue and some headaches). Makes sense to me. Goal is to get me up to 100mg of 6mp and off the prednisone by June 30.

Things I’ve learned since posting here and need to remember:
1. Drink lots of water. Carry a water bottle wherever I go and try to chug 1-1.5 gallons of water a day.
2. No corn syrup. Avoid it at all costs.
3. Control my cravings and stick to eating healthy foods and regularly eating “safe” foods. I can be my own worst enemy.
4. Stick to my meds routine and make it a habit. Multivitamins, supplements and medication in the morning with breakfast.

Goals – things I need to start doing:
1. Restart regular exercise program. Now that I’m feeling better and weather is improving, I need to get off my lazy ass and exercise more frequently (especially weight training). I feel better when I do it.
2. See dermatologist (every six months). I haven’t but should.
3. Be more aware of germs, etc. My immune system is weak and I’ve been lucky to dodge colds, etc. since commencing treatment.

 

[RafHam]

Hi Fenway. I've got a similar poo scaling system, mine is 1-5 with one being a perfect log and 5 being very watery. I've found that you become far too obsessed with analyzing faeces with this disease. I'm now an expert at judging the subtle variances of my crap.

 

[fenway1971]

Raf -
Spill it...what's your scale?

 

[kello82]

i just read though this thread and i have to say, it is very positive and i am loving it!
fenway, even when you were asking about how to cope with the frustration of it all, you still sounded upbeat and well, like you were coping already!

and everyones stories on here about their significant others really gives me some hope right now. (me and bf just recently broke up b/c of the crohn's is what it boils down to). but hearing about how your loves clean up your poo poo for you makes me smile

as far as the poo scale for me? oh boy i will be sure to count next time i go, but i am currently doing 3295238 wipers lol! i go through like a roll of TP a day!

this ileostomy will be saving my parents quite a bit $ in TP. and shower/laundry usage!

 

[danman]

Ha, Ha.... The K scale is fantastic.
I don't think I've ever had a K-1 in my life... one wipe.

Mostly K-3's and K-4's, although maybe a K-2 during Infliximab/Remy.

 

[RafHam]

My scale is no where near as scientific as yours. It's more a subjective judgment of runniness. 1 is the perfect turd all crohnies dream about, and it gets progressively mushier till it gets to 5, which is basically just water. I use the scale along with other factors to track my health in a daily record that I keep. For instance today I had a 2 and two 4's.

I don't know about you guys but I don't think I'll ever get used to discussing my poo on a public forum.

 

[Guest]

I don't know about you guys but I don't think I'll ever get used to discussing my poo on a public forum.

haha you should've heard some of the dinner table conversations at our house when i was a kid!

it's great to hear how well you're feeling keep it up!

 

[fenway1971]

haha...

kello - i must say, having read many of your posts, you're an inspiration to me and others. keep smiling and laughing and being strong...i hope your surgery gives you the relief you need. the only ones rooting against you are the toilet paper manufacturers. i haven't hit a 3295238 wiper yet, but i've topped 3000000 a few times. are you having your surgery in nyc?

raf - i'm impressed you keep a daily health record. i tried that but couldn't come up with a system to keep myself updating it regularly. after a couple days i give up. it's a great idea - that and a food diary. do you use a spreadsheet or something? how do you do it?

 

[kello82]

@ fenway- this is such an awesome place, that we can find inspiration from other members like this. i looooove it
and yup ill be at Mt. Sinai hopsital. where do you go for med care? (if you dont mind me asking here), i see youre in the city!

@ ding- LOL! poo was and still is a common dinner convo for us. the subject of my poo is such a family affair- when i was 8 and recovering from C-Diff and had my first normal poop, my mom took a picture of the toilet full of poo so she could show my dad!

 

[Guest]

@ ding- LOL! poo was and still is a common dinner convo for us. the subject of my poo is such a family affair- when i was 8 and recovering from C-Diff and had my first normal poop, my mom took a picture of the toilet full of poo so she could show my dad!

lol the ultimate proud mother moment reminds me of when my kids first used the potty - everyone had to know about it. thank goodness kids don't remember those shudderingly embarrassing moments!

 

[RafHam]

Fenway - I started keeping the record last year after my last op. I basically decided that I was no longer going to be the passenger and I needed to take a more proactive approach. Yeah I just use a spreadsheet with one row per day. In it I put med doses, no. of craps and runniness, appetite rating 1-5, weight, any test/consultations and any pain that I experienced as well as anything else that happens during the day. I recently started including a food journal in it on the advice of forum members.

It does take a bit of discipline to keep it up and I'm certainly not perfect, but it's not a big deal if you miss out on days here and there. The main aim is keep track of how you're responding to different med, foods and other factors. It takes me about five minutes every night and I do it while I'm taking all my tablets (about a million of them).

It's not for everyone, but I'm a nerd and an engineer so my first response to anything is to start collecting data.

Btw Many thanks dingbat, I appreciate the wonderful sentiments.

 

[fenway1971]

Raf (fellow nerd),
I'm impressed. How's this for nerdiniess - I have a spreadsheet that keeps results of every blood test I've had over last 10 years. I color code what's outside my normal range. LOL.

Kello,
I go to NY Presbyterian and their IBD Center. Love them - care is world class as is Mt Sinai's I here where I recently learned Crohn's was discovered!

 

[RafHam]

Haha sounds like something I'd do - don't give me ideas.

 

[fenway1971]

I'm going through serious prednisone withdrawal. Cut from 15 to 10 this week and am dragging - and at night experiencing shortness of breath. Kind of like an asthma attack. Very annoying.

 

[ChefShazzy]

you might need to taper more slowly, i taper by 5mg/week when I am at 60, down to 20, then it's by 2.5mg until 10mg, then 1mg each week from there... it helps with my withdrawal symptoms like headache and fatigue. it does seem like it takes forever to finally be off of this stuff, though.

 

[RafHam]

I was tapering at 1mg/ fortnight until I stopped about a month ago due to a flair. Keep in mind I've been on pred non stop (varying doses) for about 4 years.

 

[fenway1971]

Good advice.

I feel much better today. I think I went from 20 to 10 too quickly. Gameplan with GI is to taper off in 1mg increments weekly.

 

[fenway1971]

Just another addition to my diary. Found out today that I'm allergic to whey and cow's milk. Ironically, I'm not allergic to casein.

 

[fenway1971]

Just an update...been on 6mp since March and had increased dosage from 50mg to 75mg. unfortunately, blood work shows some elevation in certain liver items and am now back to 50mg (when i had no issues).

this blows. don't konw if that means i'm stuck on low dosage or what.

 

[fenway1971]

Hi Pen -
That's what I'm afraid of - though I haven't talked to GI just yet. She simply left a vm saying that i need to cut back.

I'm tapering 1mg/week. Down to 5 and should be off pred by mid June. Woohoo! Hopefully, no relapse. I was hoping 6mp would be my maintenance drug.

 

[danman]

As far as I remember, 6-MP is prescribed according to your weight. So many mg per Kg of weight.

I may be wrong, but I think it's 1.5mg per 1Kg.

When I started on 6-MP, I was on 100mg but after 2 years, my health had improved somewhat and my weight had gone up.
My docs increased my dose to 125mg. I took 2 50mg tabs 1 day and 3 the next, giving me 250mg every 48 hours.

 

[fenway1971]

Just journaling here. It's been exactly 4 weeks of daily headaches.

Prednisone withdrawal being ruled out given location of headache. My primary care doc - who's usually not a worry wort - is suddenly scheduling me with neurologists and ENT's who are recommending I have an MRI done to rule out anything serious since they can't seem to figure it out at the moment.

Now this simple innocuous MRI has me a bit nervous. I doubt it's anything serious or I'd be showing other symptoms, right? These headaches are annoying but not debilitating. I just want them to go away.

Well...more to follow in the coming week or so.

 

[kello82]

aw fen im sorry.
how did they rule out pred based on location? do the pred headaches only occur in certain areas? huh, i never knew that.
good luck, and let us know for sure how it pans out

 

[fenway1971]

my headaches are located on one side of head and eminate from lower around my nose/eyes which i guess is more indicative of sinus blockage/infection than withdrawal/tension. and, i guess my doc seems a bit confused by some swelling on one side of my face. it's like the mooniness is going away on one half of my face but not the other (ok, not that drastic, but you get the idea).

besides, no headaches going from 20-5mg and my taper has been slow.

 

[misscris]

Its the moon on the 3 wolf moon shirt. It's so bright it's causing you headaches. Not to mention all that howling!!!

 

[fenway1971]

HA! yeah, well, the neighbors have been complaining about me late at night. . .

 

[misscris]

Maybe they're just complaining because they're jealous.

 

[kello82]

no way!
if they figure out what the swelling is, let me know.
my face has been swollen for over a year, my right lower cheek. and im NOT on pred. but its bad enough that people ask me if i am.
i thought it could be the sores in my mouth but its still not going away

 

[fenway1971]

so, updating again, i'm scheduled for MRI next week to check into my headache thing. good news is they're less severe than they were but they're still lingering.

anyway, my primary doc called me. supposedly, report came back to him that one of my pupil's is more dilated than the other and i have slightly droopy eyelid. he thinks i might have something called horner's syndrome. never heard of it so i googled it and causes included anything ranging from the innocuous (trauma at birth and no big deal) to diabetes to potential nerve damage to tumor. yikes! hope that's not the case.

so, i'll be wearing my wolf shirt and hoping it brings me luck next week.

meanwhile, last day of prednisone is next friday! woohoo! crohn's symptoms seem to be under control too. double woohoo!

 

[island girl]

I was always a K4 but my nurse friend told me to start taking a natural source of fibre (like Metamucil) daily. I thought that was ridiculous because I was under the impression that was for constipation only, but, it doesn't work that way. She kept on me and I finally tried it and what a difference it makes. I just take 1/2 of the recommended scoop in a glass of orange juice every morning (I've been doing it for months). I am have K3's and sometimes even K2's. When I've stopped taking it, I'm back to the K4's.

 

[fenway1971]

Another journal entry just for my benefit...

Been nearly a month off prednisone. Bloating, moonface, etc. all nearly gone. Have dropped 10lbs from my peak weight on pred. Friends/family say I look so much better these days. Yay!

Headaches gone. Docs think they were related to 6mp or reduced swelling from pred. Either way, I feel much better.

This week hasn't been great crohn's-wise. Had more bad poop days than good poop ones. That said, I haven't been eating all too well due to insane travel. More adventurous than usual. Hoping getting back to basics will help.

 

[misscris]

Sorry to hear you're not doing as well this week. Very glad to see your headaches are gone though! Hope you start to feel better soon!

 

[fenway1971]

Well, it's my 1,000th post. So, I guess I would post it here where it all began. Can't believe I've been on this forum for over a year. This has truly been a great place for me - nice to chat and befriend folks who understand this disease. I truly hope to meet a few of you in person sometime.

Anyhow, thanks everybody! I'm actually been feeling great these days and it's interesting to read how bummed out I was on my first post compared to today. I was in such a bad place and such a whiner. Hopefully, this post uplifts those who have recently joined to show that you can pull through and get to happier places.

Yay!

 

[jamie2462]

bahahaa. Definitely K-3s and K-4s then. Wish I could remember the #1 situation even. lol. Sorry. Good luck. Thank god we all have our sense of humour, or else we'd be some very sad people...

 

[Shaft]

I heard that I have Crohn disease yesterday.
So far I have had a K-1 for one day..So I guess it's good, but I guess it will get worse.. am I right.

 

[shazamataz]

Great to read your back story Fen and hear you are doing well at the moment.

Love the poo scale - I am lucky that I only have K1 really. I seem to sit in the middle of that Bristol one - Yay!

Interesting ro read about the tiny pred increments which i will ask my doctor about. I was wondering why I was feeling increasingly tired while my insides feel okay and perhaps onec getting down to 15 where I am now I should taper more slowly than 5mg lots.

Ever since going from 25 to 20 I have been so TIRED!!!

Anyway, glad you doing good

Shaz