Really scared

[Marcy]

really scared

I am new to the forum so I apologize if I posted this in the wrong place.

I was diagnosed in 2005 after a lot of missteps. Since my resect surgery I have not been on Crohn's meds per say. I mean I have the usual suspects,Bentyl,imodium,tylenol.

Over the course of the last 4 months my GI quit accepting my insurance and every other place I try to get into is a 3 or more months wait.
The changes I have been experiencing have never happened before. I am having a bleeding issue when I don't even have a bowel movement,I am bloated all the time and the pain is now in 3 areas. It has been so bad it literally brings me to my knees. Another new thing is my joints,lower back,and upper thighs are very painful.

It has been a little over a year since my last scope and now that I finally have an appointment for the 24th I am terrified of what they will find. It is a catch 22 want to know but scared.. When I told them I have been getting dehydrated while using pedialite and spiking fevers to 104* the past 3 days they finally got me in.

Sometimes I feel like I want them to just remove the whole colon because I am just tired of being sick and tired. Typing through the tears now because I just do not know what to do anymore. I just don't want this pain I don't want to be afraid of leaving the house because I may not make it to a restroom, I wanna go for a hike with my son. Wish I could even remember what normal felt like.

 

[Slim Johnson]

Hang in there Marcy. Remember to take things one day at a time, otherwise, the stress will break you. It's also good to find a distraction. I have an Xbox, and the interwebs to keep me occupied. It doesn't always work, however it beats the TV.

I had my 4th scope last Wednesday, and may I say that while the CD slowly progresses, the news is never much of a surprise. It's always the same old.. Biopsies show nothing significant, this and that look normal (or abnormal), and blah blah blah... Thank you Dr. for taking my money!

Sadly, I don't have any advice with coping with the time with the kids... That is something that gives me terrible guilt as well. I have my good days when I can get the kids out for a good time, albeit they are few, and far between.

I can't say it gets easier, I can say that we can adapt, and overcome!

 

[Marcy]

Thank you Slim,
As I awoke this morning I was telling my husband I finally found a forum where I think I will be comfortable talking things through. As for adapting I have been trying to but sometimes I wanna just throw in the towel and say ok I am done.

 

[Girun]

I am sorry that you are having such a rough time. I must say that I have been diagnosed for several years. I am on asacol an remocaide treatments. I seem to do much better when I stick to a diet. By diet I mean avoiding certain foods. I have not done very well following it lately an I think as a result I have had multiple issues an feel bad a lot. I did some research an adjusted different ideals for me, but pretty much I try not to eat or drink the following alcohol, red meat, pork,sugar,fried or greasy foods, spicy foods, a lot of gas producing foods such as beans(black beans in moderation an lentils moderation ok for me) cabbage. There are a lot of different ideas but that might help some. Milk can b troublesome as well. Hope this helps. Exercise seems to help me too. Drink lots of water. Oh no soda pop. Worth a try what do ya have to loose?

 

[Girun]

Need to follow my own advise when I do I feel much much better

 

[kjhngisd]

Sorry to hear of your struggles, Marcy. Good luck with your scope results. Finding a good GI is important and very hard. Went through the same GI thing a couple years ago, but fortunately the old GI was able to get us in with a referral to the new one -- who's really, really good.
Hope things work out.
Keep us posted.
--kevin

 

[Marcy]

Thanks everyone.
I do watch my diet and avoid red meat since it is the hardest on me. The only pork I avoid is sausage and bacon because of the grease factor. Lots of fruits and veggies and farina because it is high in iron. I enjoy walking but i now do it on a treadmill because of the whole bathroom issue. At least I am still walking right?! As for water always...pedialite when it gets real bad, I love lemonade but have noticed lately it gives me horrible heartburn. Maybe a decaf tea with lemon would be better.lol..I am hoping I can get somewhere with the new GI.. He will hate me as a patient I Am sure. I am allergic to barium and dyes so ct with contrast is out.. I swear everything is catching up with me as I age lol..Anyway Thank you everyone for your words of support. Something I have realized I needed all along was to be able to talk to people who are living with this disease

 

[Manzyb]

You definitely came to the right place to have compassionate people who will listen and give advice. It is nice to know that someone out there knows what you are going through. (I hate that anyone has it at all, but it is nice to not feel alone)

Walking on a treadmill is great!! You are right... at least you are trying to do something! Im a big gym girl. I love to get the cardio in, and it does make you feel better!

Hang in there! I'm glad you found us here

 

[Girun]

It seems like different things are hard on different people as far as diet. It's just avoiding them when u know that can b hard for me. I lovemto run but is always hard when I first start up. I have some bleeding an mucous after sometimes. I also know where very toilet is on the path I run don't like to be too far but not opposed to bush in an emergency. That isn't as much of a factor if I stick to what I know I can eat. Treadmill is wonderful I think it is something do whatever u can helps w/ my stress. Lemonade does same to me used to love it. Good luck sounds like you are doing great coming up with different ways to cope

 

[Marcy]

Thanks ladies. Trying to stay positive and finding things to keep myself and my mind off the issues I have been having. My husband always tells me there is always something in a day you can fix or change so don't sweat it until you have to then we will go at it together. yes I am a very lucky gal in that respect. Girun I would love to say I have not opted for the hidden bush in the park lol.. They have 1 bathroom and of course it is on the other side of the park so to avoid humiliation or a ticket I bought a treadmill. I am loving it. I walk on average 5 miles a day unless I am having a very bad day then on goes the headphones and I may walk 7 or 8 miles before i calm my nerves..lol..
Hope you all have a great night

 

[Girun]

I trained for a marathon a few years back an even though I was in remission certain foods I could not eat an run next day found this out hard way. Lol. Seemed like closer to my remicaide treatment more foods made that list. With having to train an run so many miles there was no way my run partners wanted to do same loop. Thank god we would start between3 an 5 am so no one was out. As well as it's mostly country roads we would run. Still hard to believe I'd resort to that however when you r over 5 miles from any restroom an nature calls. Ughhhh...lol..

 

[Marcy]

Girun true very true. I live in those said country roads lol.. Funny how I would never say that to someone face to face but I can on here. It amazes me at how at ease I feel with everyone here. Thank you

 

[Girun]

Me either however somehow being on here makes you feel free to be totally honest an open. Maybe that will help us discover what we need through other people admitting things they do an or don't do