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Crohn's Can't Stop Me

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  FORUM:   General Team Discussion Forum
TOPIC:   Few questions and some updates! 


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SMILEOZ
SMILEOZ's Photo Posts: 14
4/26/13 2:59 P

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SLIMMERKIWI maybe it's not the Crohns directly, but any change in hormones affects my Crohns therefore the change in hormones that occur with my period kicks up the symptoms as do stress hormones or birth control (when I took it) did.


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KLMEENAN
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4/7/13 6:54 P

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cjnmenu, I hope that the news is good and that you get on some medicine that will help you. There are a lot of different meds out there. Chrons isn't a one size fits all disease. I totally know how there are days you can't leave the house. I was with my mom in the mall once and had to run to the bathroom. I didn't make it. Luckily no one was near me. I called my mom and she purchased some new clothes for me. Probably was the worse day in my life.

I also suffer from depression. While I am not a Doctor, I think it's very common for people with Chrons to have depression. I know 4 people with chrons who also suffer from depression

As for Diet, I recommend you keep a food journal. Everyone is affected differently by what they eat. Just remember it might not be just one item of food. It can be a combination of foods that can trigger your chrons. Personally I can't have milk, cheese, more than a bite or two of chocolate, or fried foods. I also take vitamins and a calcium pill since my body doesn't process food well. A dietician should be able to help you find supplements to take. Once you know what your food triggers are, it will be easier for someone to help you with your food choices.

Good Luck!




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CJNMENU
CJNMENU's Photo Posts: 231
4/3/13 1:52 P

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Wow thanks for the responses!!!

Its been a while since i have been back here. Had a rough few weeks and just havent really done much of anything. Had a depressive episode for a few days, maybe a week and that just really set me back.

The good news is monday i was to see the new GI. And he is confused as to why i was not getting any treatment yet. So he has ordered another MRI and scopes. Then he said we will discuss the biologics.

I am excited, yet scared. The MRI frightens me. I had one and i have a total and complete panic attack and i know i wont be able to get into that machine again. So i have requested sedation. Hoping that does the trick.

I am not sure how far into the machine ihave to go and really, right now i dont want to know. It would just freak me out more.

I do know that i am tired. So very tired......and sick of being sick. I just want a break from it all. Just a day to feel normal again!

I am always looking for ways to help deal with my Crohns If anyone has any suggestions on what works for them, how you accpeted it, how you deal with it, food suggestions, anything i would love to talk to someone who knows what i mean when i say I CANT leave the house today.

I cant remember who replied about the fistula they had but that i want to say that is crzy!! i was on about 6 different rounds of antibiotics before i saw any relief. Now i just deal cause the meds made me feel worse then the fistula actually does. I have had this seton in for over 2 yrs now....its part of my life.

I did see a dietician at one point. She wasnt very smart. I mean seriously, when i came in she said that she didnt know much about Crohns and would try and look up al lthe answers to my questions......and she did actually search on line when she didnt know things, which was about every second question......sigh.......i dont know if there is anyone different in this area or not but i doubt it.

Ok well the sun is finally shining and i have plans tonite as long as my body works with me and not against me! So again, thanks for all the replies!!!!!

baby steps baby steps
Learning as i go


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SLIMMERKIWI
SLIMMERKIWI's Photo SparkPoints: (112,585)
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3/15/13 4:01 P

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SMILEOZ - are you SURE that it is the Crohn's that is acting up immediately prior to your period? The reason why I ask is that I don't have Crohn's and nor does my daughter, but my bowel habits would change considerably to be on a par with my husband, who DID have Crohn's. My daughter's would, too. After a day or so, our bowel would become normal again. I know many women who this happens to.

Kris

Co-Moderator Dealing with Depression
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ndividual.asp?gid=953


Team Leader Essential Tremors :-) (Benign and Familial) www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=30225


Co-Leader Crohn's Can't Stop Me
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ndividual.asp?gid=17464


I am not a Dr - please check with your qualified Health Professional for a diagnosis and treatment plan


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SMILEOZ
SMILEOZ's Photo Posts: 14
3/15/13 10:52 A

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My crohn's acts up a day or two before and into my period. It's the hormone change. So if you did go back to the pills that skip your period you probably wouldn't have the issue anymore because your hormones to jump start the period process would be held at bay. This is my guess.


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SLIMMERKIWI
SLIMMERKIWI's Photo SparkPoints: (112,585)
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3/8/13 5:11 P

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Unfortunately I can't help you with your queries, but I can comment! POOR YOU :-(

I always used to get an achy butt with my period, because my bowels always used to get looser and more frequent, (and my daughter has the same thing now), but it isn't me who has Crohn's - it was my husband. I hope that your new GI finds out what the problem is with you. I wonder if you would find it beneficial to ask for a referral to a Dietitian would be helpful. She might be able to help you adjust your nutrition around this time, to help deal with the ongoing 'butt problem'!

Good luck,
Kris

Co-Moderator Dealing with Depression
www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=953


Team Leader Essential Tremors :-) (Benign and Familial) www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=30225


Co-Leader Crohn's Can't Stop Me
www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=17464


I am not a Dr - please check with your qualified Health Professional for a diagnosis and treatment plan


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GENEVIE5
GENEVIE5's Photo Posts: 3,176
3/7/13 3:05 P

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I have a fistula that no one seems to care about! I was recently diagnosed with Crohn`s and will start Remicade at some point ( after the insurance and others battle it out! ) I also have Arthritis so I have been told that Remicade will help with both! I had an operation once on my fistula in 2004 ( prior to Crohn`s- but, really...........maybe not! ) and it came back. 2 separate antibiotics did not cure it. I am to the point that I can`t do Spin classes because it hurts so much! Mine is not perianal but in the groin area. I don`t know what to do anymore either!


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CJNMENU
CJNMENU's Photo Posts: 231
3/7/13 1:38 P

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So i havent been here in a long while!!!! i come to SP and i blog fairly regular but that is about it. Somethings have been different in my lil Crohnie world so i though hey, this might be a good place to come.

So my NP put me on a higher dose of BC to try and regulate my periods and my symptoms. what it did was cause me to flare the week before my period. How does my body knwo? I dont know. The pills i am on are all the same each week so there is no prep for my body. BUT either way, it flares. So now she is suggesting i take the pills back to back to skip my periods and see if that confuses my system and there fore the flares wont happen.

Has anyone had any experience with this? I dont mind trying it but man oh man something has to give here!!!

Next, anyone have fistulas? Anyone ache from them? Mine are perianal. And i have had a seton in for almost 2 yrs now. And i find especially during period week the most that my butt just aches from all the extra BM i have . I sit on heatbags and take tylenol, which is all i have , as my drs dont want to give me anything else for pain. Oh i have T3 but they dont do anymore then the tylenol does. What do you do to help relieve the ache and pain??? I am sick of soaking in sitz baths.....i feel ike i have going to pickle my butt.

Next i am not on any treatment yet. Been two years and not one dr will OFFICIALLY say i have Crohns. They all say it but no one will put it in writing......so i am seeing a different GI soon, and i will be getting another scope done. Then i hope to have that official word. There was talk of me being put on Remicade or Humira. If you ahd a choice which would you choose??? I hate needles. Like really hate scared of needles. So i am not looking forward to either. But if i had to choose i would say Remicade ......but i dont know much more then what i have raed. So some personal opinions would be great.

My diet sucks right now too, so i am looking for ways to beef that up.

thanks for making through my long post!!!!

Hope you are all feeling well!!!!!



baby steps baby steps
Learning as i go


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