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Crohn's Disease
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Posted 9/21/2012 2:02 PM (GMT 0)
I am not diagnosed yet but its pretty clear their is something going on I am scheduled for labs and colonoscopy . I am on a round of Antibiotics for Kidney infection Septra is what they gave. I am also back on my iron and Vit c which upsets my intestines. This morning I got to work and was talking to one of my coworkers and then it just hit me out of nowhere that cramp that tells you, you better find a bathroom fast. We work in a small office bathroom isn't far but I didn't make it just poured out of me and of course smelled like iron filled the office with that nice Aroma. Luckily I had clean clothes with me 1 set. So I go to the bathroom clean myself up change my clothes proceed to login to my work station and it hit me again and was running down my leg. I had this happen before but it been a while because I don't take antibiotics unless I have to and I'm bad about not taking the iron. Well my daughter also works there and as I was going out the door to come home she reminded me she leaves at 2. I told her I didn't know if I could make it all day. Then I got the look from her that she was frustrated with that. but I cant help it. I hate I have no support system from my family. I left out of there crying and home now I took a dose of codien to slow things down before I go back but how do people do this day in and day out. I am in my forties and I noticed as I get older my symptoms are getting worse I am getting help now but this should have been addressed a long time a go.
Thanks for allowing my to vent.
Posted 9/21/2012 2:46 PM (GMT 0)
Oh my goodness, what a rough day! :( I am so sorry. (((hugs)))

I'm a teacher, and I first got symptoms and diagnosed during the first week of a school year. It took two months to actually get a diagnosis and then another four months of prednisone to start letting up of the urgency, the d, and the blood.

Honestly? I just held it in. I look back now and I have absolutely no idea how I did it. I was teaching middle school at the time, and you can't just run out of a room full of 30 7th graders and leave them on their own! I would get cramps so bad and just have to stand there and smile, praying the bell would ring soon for passing period.

I know this isn't the most helpful, I'm sure. Have you tried Imodium? I've heard that can work for some people.
Posted 9/21/2012 5:30 PM (GMT 0)
That must have been very difficult I would have had a panic attack not being able to leave for the bathroom. I cant hold mind very well when my last child was born they clipped and damaged a muscle that I need to hold stuff in. I guess most of the time I can hold for a few seconds but when its projectile poo I cant do it. Prednisone helps me but because I am not diagnosed yet I only get the pred for other illnesses and its hardly enough to keep things calm. I will be seeing the Gastro before my colonoscopy I'm hoping he gives me something to slow things down. Usually I'm able to work and pretend everything is OK. I just suffer in silence I'm always prepared with extra clothes, wipes . Whatever this is that I have (Dr leaning towards Chrones) is not just physically debilitating at times and is also mentally debilitating. I run through the whole gambit of emotions. Embarrassed, Depressed, Anxiety you name it uggggg.
Posted 9/21/2012 5:51 PM (GMT 0)
Wow, I am so sorry. This may seem like a really silly suggestion and I'm not sure if it's practical or not. I actually don't know what they're called, but would "adult diapers" work? Not as a way to not have to rush to the bathroom, but to protect clothes so that you don't have to change or ruin outfits? Or even a really big pad might work, maybe? I know it sounds embarrassing, but there's been a time or two where I've ruined outfits when I wasn't able to hold it, and so I've used big pads during flares just in case stuff leaks. And now I have a rectovaginal fistula, so I can't hold anything anymore anyway because then it just pushes through and comes out my vagina instead. Worst feeling ever.
Posted 9/21/2012 6:54 PM (GMT 0)
Ok now that would freak me out I cant imagine how that feels and I hope I never have to know. Ive wore the depend pads before when my stool is more solid im fine but when there is a lot of mucus it leaks out or if its mushy or comes out like sand. . I also have 2 tears in my rectum that leak a little and a skin tag I never knew what they were and was to embarresed to ask a dr until now. He said he thought they were fissures but will know more when the gastro looks at them this was my MD that checked me. Ive thrown so many pairs of underware away I would probably have a couple of hundred if I saved them all. I make sure to buy the value packs as I know they will get worn out quick.
Posted 9/21/2012 10:18 PM (GMT 0)
Hi Mom2Type1JD,

A few things that you may want to consider, Imodium but on the manufacturers label it is stated not to take their product for more than 2 days. I took Imodium on a regular basis as per my GI a very long time ago. You may want to speak with your GI about that and the rest of this list.

A Gluten Free Diet, Gluten-free diet: What's allowed, what's not-
www.mayoclinic.com/health/gluten-free-diet/My01140

Cholestyramine Powder(Questran) which is something I have taken after a lower bowel resection.
Cholestyramine Side Effects-
www.drugs.com/sfx/cholestyramine-side-effects.html

Metamucil and psyllium seed.
Can you clarify if you had the urgency/diarrhea prior to taking the Antibiotics?

I had massive urgency issues begin 2 years ago, so much so I went on disability. For the past 15 years I've commuted to Manhattan and had been on trains, they have bathrooms to use but at the time, I didn't have urgency issues. I should say not nearly as extreme as to the urgency that started up 2 years ago.
I of course now had been working in New Jersey and had to drive to work, sit in bumper to bumper traffic for 3 hours a day, on a 9 hour work day. At the office I worked in, it's a wide open floor with desks, about 50 people, 98% men with 2 stalls in the men's room. I had numerous close calls with the stalls being occupied and we weren't allowed to venture down to the first floor and use the bathroom there. The company occupied 2 floors in our building and the bathroom downstairs was just a single toilet and a urinal, no stall and that meant people locked the door once in there.
The company occupied 4 office buildings, a corporate park but the next building had been about 1/4 of a mile away from our building.

Edit:
Someone just bumped up a post about Cholestyramine Powder.
www.healingwell.com/community/default.aspx?f=17&m=2082398

Post Edited (Datawraith) : 9/21/2012 4:22:03 PM (GMT-6)

Posted 9/21/2012 11:16 PM (GMT 0)
Imodium makes me crampy and sick to my stomach. Gluten free would be hard I'm already struggling with food.

This is what I DON'T eat
Fried foods
spicy foods
dairy
preprocessed food as little of this as possible
Caffeine
Chocolate
Alcohol
eggs
raw veggies
most fruit I only eat bananas
I'm scared to eat most foods
Anything with nuts or seeds I don't touch.

Do you need a prescription for Cholestyramine Powder?
Posted 9/22/2012 1:07 AM (GMT 0)
Hi Mom2Type1JD,

Hum, OK, very sorry to hear about your reaction to Imodium and the other issues you're currently experiencing.
Yes, you would need a prescription for Cholestyramine Powder (Questran). It's actually prescribed to reduce the amount of cholesterol and certain fatty substances in one's blood but also absorbs excess bile acid in the intestines. A reason to discuss taking Questran with your GI is because Questran can also bind to other medications and to any B12 for example. B12 orally, not in the way of an injection.

As you indicated, Iron is causing you problems, is the Iron supplementation being taken orally/ferrous sulfate? A side effect of Iron supplementation is diarrhea. Were you advised as to why you have an Iron deficiency or that's yet to be determined? As in from Crohn's possibly causing deficiencies, which is common.
The issue you're having with Iron, if taken orally may be due to certain ingredients. It may be a case of finding one that suits you best, pur-Absorb is very good.
www.nelsonsnaturalworld.com/en-us/us/our-brands/pur-absorb

If you remain intolerant of oral iron, which seems likely, there's always Intravenous Iron therapy.

When do you have your appointment with the GI and when are you having the Colonoscopy along with the blood work?

"Whatever this is that I have is not just physically debilitating at times and is also mentally debilitating. I run through the whole gambit of emotions. Embarrassed, Depressed, Anxiety."
You're amongst many others that truly understand, please always feel free to ask questions. Nothing is considered TMI (too much information) with us.

"I hate I have no support system from my family."
I'm sorry to hear that, hopefully you can consider us as a support system. We're definitely here to help. :-)
Posted 9/22/2012 8:01 AM (GMT 0)
I'm take ferrous sulfate and Vit C. This is why I am having a colonoscopy he thinks my iron issue is due to adsorption i really dont absorb hardly anything Vit and minerals its like everything just goes straight through me. I have other vitamin deficiencies as well so based on that with everything else I have wrong he is leaning towards chrones but will not know until they do the colonoscopy. I'm not bleeding a lot from the bottom unless I cant see it. I do bleed from the tares down there sometimes

The Labs are scheduled for Friday. I have a Gastro appointment in about 4 weeks and he will schedule my colonscopy from there. When my labs come back he is going to decided if I need a blood transfusion or Iron by IV. I will gladly take either one I hate these little pills. Ive been trying to take these stupid things for about 13 years I don't take them most the time but I know my iron is really low I try to eat iron rich foods but not sure im getting much from that.

Thank you so much Ill look at pur-absborb I hope these get me fixed I have problems from my mouth to my behind.

Thanks so much for your advice
Posted 9/22/2012 12:57 PM (GMT 0)
Hey Mom.,
I only had 3 different employers during my working days and each was made acutely aware of my disease and what some of my days would be like.
Fortunately for me they were all very understanding and I was able to stay with each until I was unable to do the work anymore.
Wish I had the D dilemma solved too!
Posted 9/22/2012 3:14 PM (GMT 0)
Yea my boss is very understanding its the coworkers that make comments about the smells in the bathroom and when I take off etc..... I always make sure to use plenty of air freshener Ive even been known to clean the toilet while Im in there. Its the urgency and making it to the restroom that can be a problem sometimes most of the time I make it but If I;m recovering from a bug or taking something that causes D then I have trouble making it. I've been with this employer of 7 years and hope no matter what my outcome Is can continue to do my job luckily its a desk job so I figure that's in my favor.
Posted 9/22/2012 4:23 PM (GMT 0)
Hi Mom,
Someone on here says "C-Calcium Ascorbate is easier on the gut", I'm on here researching as to things that might help my situation, and decided I'll try to replace the vit C I take with this one . Best of luck on this journey.
Posted 9/22/2012 6:45 PM (GMT 0)
Hi Mom2Type1JD,

Glad that the labs are being completed soon, wish the GI appointment was less than 4 weeks off. This has been happening to you for 13 years, the deficiency and diarrhea?
If so, ouch, that's a very long time to endure the problems you're having.

A few things you can try that may help, worth a shot at least (until you get pur-Absorb if you're going to give it a shot)-
Take the pill with food if you can manage it.
Take the pill in divided doses. For example, if you are prescribed two pills daily, take one in morning with breakfast and the other after dinner.

Those tears you have definitely need to be addressed too. I wonder if seeing a colon/rectal surgeon would be better to see. You may get a prescription for 2% Diltiazem - 2% Lidocane that is used once to twice a day. I see what you're going through as a vicious circle, you're bleeding from the tears, have anemia and an Iron deficiency. I'm hoping you can get everything treated and be a lot better off for it. Just some thoughts and you may be able to see the colon/rectal surgeon quickly rather than waiting 4 weeks.

Post Edited (Datawraith) : 9/22/2012 4:22:37 PM (GMT-6)

Posted 9/22/2012 11:25 PM (GMT 0)
I don't know why it is so far out I should call Monday and let them know maybe that my symptoms are flaring and if they cant get me in sooner maybe then the ER.

I'm going tomorrow to see about the pur absorb iron you told me about. I didn't take a slo fee today but I did still take my 2 flintstones chewable vitamins they do have a small amount of iron in them.
Posted 9/23/2012 8:46 PM (GMT 0)
Questran--I tried it along time ago and severe abdominal pain--I have had a few different jobs since my dx--after my surgery I had about two years of getting stuck in the bathroom on a regular basis at work..My current job I have an issue now and then--I get stares sometimes but no one says anything..My current position requires alot of time on the phone which on some days can be tricky..I have been having trouble first thing in the morning and right after I eat lunch with urgency lately..A fellow co-worker at another job who was a fellow cd suffer use to keep a special spray she use to keep in her purse she swore by for odor..She had a ostomy-bag for awhile and then had it reversed and has been in remission for 4 years..
Posted 9/23/2012 11:23 PM (GMT 0)

Mom2Type1JD said...
I don't know why it is so far out I should call Monday and let them know maybe that my symptoms are flaring and if they cant get me in sooner maybe then the ER.

I'm going tomorrow to see about the pur absorb iron you told me about. I didn't take a slo fee today but I did still take my 2 flintstones chewable vitamins they do have a small amount of iron in them.

Hi Mom2Type1JD,
Yeah, I would try to be seen a lot sooner than 4 weeks off, your symptoms are severe and would warrant an earlier appointment. Please let us know tomorrow if you can get the appointment changed.
Posted 9/24/2012 4:16 PM (GMT 0)
OK I called GI this morning finally got through they are still move their files to electronic format this week. I have to call back Friday. We have another GI in town but he has a horrible bedside manor according to my MD I wouldnt last long with him I have way to much anxiety next would be port orange but thats just to far probably an hour and a half  one way.  I did pick up some pur absorb started taking yesterday no side effects yippee but man that stuffs expensive $20 there was a $2 coupone inside the box though.

This is going to be a process I can see now. Once my labs come back if im severly anemic Ill probably end up in the hospitol anyway maybe then someone for the love of god can do a colonoscopy on me so I can get some medicine.  

Posted 9/24/2012 8:01 PM (GMT 0)
I have no control of my diarrhea...alot of the times dont even have warning...I have been wearing Depends for 3 years now...the new panty type are nice..sometimes they dont hold it all but do help...Have had it running down legs also...thank goodness I was able to retire...taking prescribtion anti-diarrhea med and it works faster then imodine...Started Remicade and had second treatment and has helped some..so hopeful

Know people can be unsenstive to our issue..I hear all the time...You dont look sick...I finally say "Thanks I wish my gut felt as good as you say I look"

We are on strong bunch of people I know that...

 

Posted 9/24/2012 9:59 PM (GMT 0)
I'd wait until Friday too then if one GI isn't so nice and if an MD warned you, it must be significant.
That's awesome news about the pur-Absorb working for you and no side effects and yes, somethings we have to get to help us out are expensive. The Probiotic I get is $60, VSL#3 and then other supplements, it sure adds up.

Hopefully when you call Friday, you can be seen next week and get a Colonoscopy scheduled quickly.
Posted 9/25/2012 12:17 AM (GMT 0)
So sorry ! I am experiencing terrible urgengcy. The fear that I get with that is overwhelming. I get little to no warning and once the anxiety starts I'm running and its bad news. I'm on leave from work because of this. But if I had a place to change even if I did have accident it would help. Once inflammation goes down so does urgency. My first sxs to come and last symptom to go! Ugh! I have an extra minute with multisyptom immodium taken in am before work, welchol aka cholestramine, gaps diet has helped to get better faster not really help urgency. Goodluck I feel sobad for any of that have to go thruthis. When even leaving the house becomes scary
Posted 9/25/2012 11:33 AM (GMT 0)
yes the urgency is probably one of my worse symptoms, as well it hits from out of know where. I work for State Farm and I have left people sitting at my desk while I excused myself to go to the bathroom. Of course then the other employees feel they have to inform me that I cant be doing that. Oh yes I can if it means the difference between crapping my pants in front of a customer. I get so frustrated with this whatever it is I have. Like last night for instance I just got off prednisone 2 days ago and now last night I started running a fever of I feel like dooky this morning but I still have to go to work darn it. This is starting to wear on me mentally I just want to be normal. My aunt actually has UC and she suffers so bad.

I was on the prednisone for bad sinus inflammation but it sucks it does help my bowels when Im on it but when I get off they start acting up again.
Posted 9/30/2012 2:44 PM (GMT 0)
the only thing that helped me and enabled me to work full time was taking extended release codeine (prescribed) daily, its been a blessing (and I've tried them all) and going gluten free
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