Author: Sorting Last Post on Top ↓ Message:
KXW561's Photo KXW561 SparkPoints: (37,724)
Fitness Minutes: (8,358)
Posts: 7,385
11/28/10 6:32 P

My SparkPage
Send Private Message
Reply
thank you

Karen


 current weight: 144.5 
 
229
207.875
186.75
165.625
144.5
SHARON_I Posts: 8
11/28/10 7:41 A

My SparkPage
Send Private Message
Reply
One thing I have learned to do when having a flare up is to eat every hour or two, something small and easy to digest. A piece of toast, some yogurt, or something like that. Apparently keeping something in my stomach and therefore something in my intestines helps, though I'm not sure why. And when in a flare up I can't eat any high fiber foods, and hardly any vegetables. It's frustrating.

 Pounds lost: 0.0 
 
0
16.4
32.8
49.2
65.6
KXW561's Photo KXW561 SparkPoints: (37,724)
Fitness Minutes: (8,358)
Posts: 7,385
11/27/10 9:33 P

My SparkPage
Send Private Message
Reply
Hi I am Karen and was diagnosed with alcerative colits about a week ago. Spent the first week at the clinic getting IV's due to dehydration and going back and forth to the hospital with extreme pain. Finally was admitted and had colonoscopy to confirm diagnosis. I am taking Asacol, Metoclopramide, Metronidazole, Ciproflaxin and Pantoprazoe. I am also taking Levothyroxine for uderactive thyroid and Wellbutrin for anxiety and depression. I bought the book "The New Eating Right For A Bad Gut" by James Scala, PHD and "A Patient-Expert Walks You Through Everything You Need To Learn And Do The First Year for Crohn's Disease And Ulcerative Colitis" by Jill Sklar. Both books have been very informative. Dealing with UC has made my anxiety level go up, but I see a Pyscologist for other problems and she can help me deal with this too. I have lost my weight and am just trying to keep it off now. I have been continuing to lose because when I hurt I am afraid to eat so it does not make things worse. Any suggestion you can give me for flare ups will be helpful.




Karen


 current weight: 144.5 
 
229
207.875
186.75
165.625
144.5
PAULSNANASUE's Photo PAULSNANASUE SparkPoints: (34,115)
Fitness Minutes: (32,110)
Posts: 1,014
11/8/10 9:14 A

Send Private Message
Reply
First, I want to correct where I misspoke. It wasn't an endocrinologist that I've been seeing; it was a gastrologist. When you get to my age, you meet a lot of "ologists". LOL

I understand about the inconvenience of driving. But, once you been seen and had a conference as to the game plan, a lot can be handled over the phone.

Also, you could just talk to the doctor that prescribed the enema about finding a different course of action. It never hurts to ask.

There are different types of colitis and hopefully the doctor was able to tell you. If the doctor can't tell you which type you have, you definitely need a different doctor for this. The different types require different treatments. There's a lot of info on the web.

Again, it does seem overwhelming especially when you're hurting, but it will get better. You need to be persistent about being an advocate for yourself. Hang in there.

Sue

 current weight: 170.0 
 
225
205
185
165
145
SHARON_I Posts: 8
11/7/10 11:25 P

My SparkPage
Send Private Message
Reply
She did not do the colonoscopy, but she is the one who ordered it, because I was still having so much pain and bleeding, after the C. diff was supposedly healed.

I live in a pretty small town in Iowa, and to go to a specialist I will have to go to Des Moines. It's possible but I've been putting it off because of inconvenience. I suppose being in pain isn't too convenient either though. :)

 Pounds lost: 0.0 
 
0
16.4
32.8
49.2
65.6
PAULSNANASUE's Photo PAULSNANASUE SparkPoints: (34,115)
Fitness Minutes: (32,110)
Posts: 1,014
11/7/10 11:21 P

Send Private Message
Reply
You definitely need a different doctor. Even my GP sent me to a specialist. Did the nurse practitioner do the colonoscopy? I was sent to an endocrinologist for my colonoscopy and he's the one who discovered the microscopic colitis.

What was explained to me about pepto bismal is it's the ingredient bismuth that is sometimes effective with the inflammation.

Do expand your research and resources. It sounds like you have been suffering unnecessarily.

 current weight: 170.0 
 
225
205
185
165
145
SHARON_I Posts: 8
11/7/10 10:51 P

My SparkPage
Send Private Message
Reply
Thanks Sue, I've not thought of trying Pepto Bismol for any of this. My doctor has only prescribed hydrocortisone enemas for flare ups, and I absolutely detest using those! I am not on any other treatment, except trying to control my diet. I'm sure part of that is I see a nurse practitioner, instead of a specialist. She is really good for most things, but in this I feel like I'm a bit on my own.



 Pounds lost: 0.0 
 
0
16.4
32.8
49.2
65.6
PAULSNANASUE's Photo PAULSNANASUE SparkPoints: (34,115)
Fitness Minutes: (32,110)
Posts: 1,014
11/7/10 10:06 P

Send Private Message
Reply
I also have colitis-the microscopic form. I do understand what you mean about finding that balance of the right fiber and exercise.

As for exercise, do what you can such as upper body. Take the time to look at the demos of the different exercises and try them. If you can even just pick out a few, that's a big step towards building muscle.

Has your doctor put you on meds for the flareups or made suggestions for the gas? I take Phasyme (or the generic version), OTC, for the gas and it helps with the cramping. Depending upon the severity of the flareup, 8 weeks of pepto bismal can control it. If it doesn't respond, I have used Entocort. Talk to your doctor about what OTC's can be used in conjunction with your meds.

I've been dealing with this for about 4 years and a lot of it has been trial and error. Take the fiber suggestions with a grain of salt. It's calculated for the average person with the parameters given in the fitness plan.

So, don't quit. If you're using the tracker to develop your menues, don't be afraid to switch things around. Just make sure you're taking good vitamin supplements to make up for the minerals you don't get if you have to cut back on veggies.

It may seem overwhelming at times, I know. Sometimes I whimper with how sore I can get (you know what I mean). All we can do is take it a day at a time and try different things. Journaling can help track what helps or not.

Hang in there,
Sue

 current weight: 170.0 
 
225
205
185
165
145
SHARON_I Posts: 8
11/7/10 9:38 P

My SparkPage
Send Private Message
Reply
Hi everyone! I'm Sharon, and I have had colitis for a year now. I have had IBS ever since I was a kid. In November last year, I got a terrible C. diff. infection. I did not recover, and so I had a colonoscopy. This showed that I now have colitis.

I'm learning that this is much more challenging to deal with than IBS. There are things I simply cannot eat any more - like broccoli, cauliflower, cabbage. There are some things I dare not eat when I'm having a flare up - like whole wheat, or any raw vegetables.

I just joined SparkPeople last week, and I have been using the menu plans. The food has been great, and very well balanced, but it is definitly higher in fiber than I have been able to tolerate for the past year. And the last two days, I have been in some distress.

I don't want to quit, but I don't want to be in pain, either. It is strange that fiber is such a problem. The cure for my IBS was generally taking 2-3 doses of Metamucil a day. Now, that would just about kill me.

Exercise is difficult to do when having severe abdominal pain. But I'm pressing on as long as it doesn't get too bad. :)

 Pounds lost: 0.0 
 
0
16.4
32.8
49.2
65.6
Page: 1 of (1)  

Report Innappropriate Post

Other Sparks for Persons with Crohns and Colitis! Introduce Yourself to Team Forum Posts

Topics: Last Post:
Hi! I'm new to the Team Forum 12/9/2013 8:30:14 PM
Hello All! 9/13/2013 7:16:28 PM
New member-Is anyone documenting symptoms here? 9/13/2013 6:55:35 PM
Long road led to Crohns 9/11/2014 12:01:52 PM
Hi! 2/27/2014 12:14:35 AM

Thread URL: http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x29904x37795176

Review our Community Guidelines