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mmclaughlin18
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 9/4/2007 11:31 AM (GMT -7)   
I am really looking for some support and help if you dont mind.  I have had Crohn's disease for about 5 years now, but as of late of have had on of the worst flare ups Ive had.  I am currently going to the restroom 100 times a day, bleeding, cramping, lost 25 pounds this week, etc.  The unfortunate thing is, i dont have insurance because I am an Independent Contractor so I cant get group insurance.  I am currently getting onto a state funded program, but i have to wait 5 more months to get covered completely.   I am obviously trying to stay out of the hospital for the obvious financial reasons.  I have been to the hospital enough times to know what i get perscribed.  Please advice at my current routine and any advice on what I can do to get this turned around would be much appreciated.
 
Pentsa-16 pills daily
Prednisome-40m
Cortozoine Enemas Nightly and Daily
 
I am currently eating saltine crackers with my prednisome, Ensure, gatorade, water, soup broth.  What does everyone think about taking hot baths??? It makes me feel so much better down there, but I remember when I played football for Nebraska, they told me that ice will help inflammation but heat wont.
 
Any advice would help,
 
thanks
 
Michael

mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 9/4/2007 1:19 PM (GMT -7)   
Michael,

I wish I had some better ideas, but here is the few things I've learned over the last 15 years:

Gatorade has a lot of sugar, and that can add to the diarrhea. One of my doctors suggested I cut it down to a 50/50 mix of Gatorade and water. Check into things like Pedialyte, which is a no sugar re hydration drink for children. I noticed that sometimes the Gatorade tended to make things worse, or even trigger problems with me.

Saltines are good, but if you can tolerate it, something with a little more "bulk" or fiber might slow things down a bit. I understand that not all of us can tolerate the fiber though.

It was recommended that I try Citrucel or some similar thing to help slow down the "flow" Again, fiber, so you really have to be careful if you have gut narrowing.

As for the sore corn chute, diaper rash cream works for me. I've never tried baths, but I've heard some say they help.


And...
What I've learned from my hospital stays...

They have always put me on NPO, nothing by mouth. Unless you can do your own IV's, this is a real pain. You would need some sort of fluid. Anyway, stopping all solid food for a couple of days seems to help a bit, that and all the drugs. Prednisone seems to be the trick, but I wouldn't suggest messing with that without a DR. around.

Basically, fluid in small quantities and watch out for sugar.

I hope you get it sorted out. I know without health insurance I couldn't afford to be sick.
Matthew McKenna,

"I'm just along for the ride."


mmclaughlin18
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 9/4/2007 1:26 PM (GMT -7)   

Thank you very much, your insight has been extremely helpful.  I have been reading up on sugar and I figured that gatorade probably wasnt the best bet for me.  Any suggestions on higher bulk foods instead of saltines?

thanks again

 

Michael


mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 9/4/2007 1:38 PM (GMT -7)   
Wheat bread, if you can handle it. Mashed potatoes are a big favorite for the Crohn's crowd. White rice, Bananas, toast.

Fish works well for me. Something simple, it digests easily and is generally good for you.

I guess some of it depends on which way your Crohn's goes. If you get a lot of diarrhea, things to slow it down work well. If you have constrictions in your gut from scar tissue, then fiber heavy things will cause a lot of pain, and maybe even blockage.

I've found that if I try something new, start slow and in small quantities, I can figure things out without getting in to much trouble. Like while bananas work well for some, they cause me a lot of pain. Mashed potatoes are almost always workable when I'm in flare.

Beware of milk and dairy products. Even if you are not lactose intolerant, you can have issues when things are in flare.

Stress is an issue, even though they say the disease is not caused by it, it does play a roll. At least for me it does.

With all the fluid loss, also watch out for kidney stones. Sounds like you are doing your best to stay hydrated. I have a big issue in this department. Whenever my disease starts to kick up, and it is summer time, I can almost always count on kicking out a stone or two in the next few months. I just had one a few weeks ago. Watch out for lower back pain, on one side or the other. They are not fun.
Matthew McKenna,

"I'm just along for the ride."


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/4/2007 1:47 PM (GMT -7)   
Cut the gatoraid right out and use pedialyte for your electrolytes to be replenished from so much D...cut all sugar out of your diet, cut back on all dairy during this terrible flare (you might want to consider keeping those things cut out of your diet indefinitely), avoid processed foods, drink home-made smoothies with yogurt (the exception of dairy because of it having good bacteria cultures in it), banana and a touch of pure juice with no sugars added.

Add a good probiotic daily (besides the yogurt) I use primadophilus Reuteri by natures way, it has guaranteed intestinal release and it's affordable but must be kept in the fridge.

Also add a fibre supplement to bulk up your stools, this will not make you constipated so don't worry, I use Prodiem (similar to metamucil) daily for the last 4ish yrs since my GI recommended it to me, he told me to take it daily for the rest of my life, it's helped tons.

Avoid processed foods, refined/processed sugar, fast-foods, animal fat (butter and such), caffeine, use extra virgine olive oil instead of butter and Stevia and/or honey as a sweetner. Start drinking chamomile tea daily.
 
Avoid sugar substitues, artificial sweetners especially sugar alcohols, anything ending with "tol", like sorbitol, malitol, ect.

:)


My bum is broken....there's a big crack down the middle of it!  LOL  :)


mmclaughlin18
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 9/4/2007 1:53 PM (GMT -7)   
This has been extremely helpful from each of you, thanks

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 9/4/2007 8:02 PM (GMT -7)   
Michael hi,as you can see we have some wounderful people on the forum and I see that you have all ready got some good advice.Michael you said that you are trieing to get state funded insurance,so if you don't mind me asking what state do you live in?I am in Tn and we also have state funded insurace it is called Ten-care and I don't know what I would have done had it not had that insurance.Please let us know how you are doing.
Curley
.........
 


mmclaughlin18
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 9/5/2007 5:50 AM (GMT -7)   
Curley, It is called CHIPS-Comprehensive Health Insurance Program, for the state of Nebraska. Truthfully, I have a wonderful mother and father in law who are both pharmists, so I went to an Emergency Care place that wrote me a script and they filled it for me. That is the only way I have gotten this far without going to the ER.

I really appreciate everyones advice, as many of you know, it can be very easy to become emotionally weak from a bad flare up, so right now this was the support I needed. Being 24, this seems a little rough for so young, but a few weeks back I did some autograph signing at a Crohns and Colitis walk in Omaha, NE and saw manyyoung childern, I cant imagine how they must take it. So blessings to all, thanks again

mmclaughlin18
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 9/5/2007 5:52 AM (GMT -7)   
Curley, It is called CHIPS-Comprehensive Health Insurance Program, for the state of Nebraska. Truthfully, I have a wonderful mother and father in law who are both pharmists, so I went to an Emergency Care place that wrote me a script and they filled it for me. That is the only way I have gotten this far without going to the ER.

I really appreciate everyones advice, as many of you know, it can be very easy to become emotionally weak from a bad flare up, so right now this was the support I needed. Being 24, this seems a little rough for so young, but a few weeks back I did some autograph signing at a Crohns and Colitis walk in Omaha, NE and saw manyyoung childern, I cant imagine how they must take it. So blessings to all, thanks again

Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1205
   Posted 9/5/2007 7:58 AM (GMT -7)   
First off so sorry you are so ill.
I cant take Ensure it gives me the runs really bad.
Have you been offically told you have crohns? i not you need to be checked for C-diff and Haaba syndrome please google both.

Go the the hospital your health is worth more than dying wasting away. They cant do you anything just pay 5 dollars a month on the bills you cant go to jail for not paying medical bills.What state are you in??
hugs,sm
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)


jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1131
   Posted 9/5/2007 8:27 AM (GMT -7)   
Have you tried calling CCFA's Information Resource Center (IRC)? They may be able to help you get assistance in your area.

1.888.MY.GUT.PAIN

 .jb


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 9/5/2007 8:52 AM (GMT -7)   
Someone suggested diaper rash cream- calmoseptine has been a life saver for me.  It's got menthol in it, and I find it very cooling and soothing, as well as giving you a moisture barrier.  Drug stores don't seem to carry it routinely, but they can order it for you.  Just don't use it on a baby.  My surgeon said that a baby's nerves will interpret the tingling of the menthol as pain.  For me, it was a little itchy the first time or two, but after that it's been a huge relief.
 
Good luck.
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