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TDougW77
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/30/2008 3:04 PM (GMT -6)   
Hello there!
 
I am in the process of being diagnosed with either UC or Chron's Disease.  I am waiting for an apointment with a GI doctor and will go from there.  I have been to my family doctor several times in the last couple of months and my doctor is certain that I have either UC or Chron's.  I am currently on Prednisone and Bentyl to help with my symptoms until I am officially diagnosed.
 
I am 30 years old, and this is the most painful thing that I have been through.  I am to the point where I feel like my life has stopped just trying to get through this.  Does anyone have any advice on how to cope day by day?
 
My other question is...since I have had this I have been extremely itchy (to the point where it aches) and nothing has helped.  I have tried lotions (prescribed and over the counter), and I have tried changing detergents...etc.  My doctor seems to think that this is from the UC.  My question is, this itching never stops...I can't sleep because of it, and am just miserable through out the day and it NEVER goes away.  Does anyone else have this problem, and if so, what do you do about it?
 
My last question is that since I have had this, I am barely able to eat.  I bascially eat baked chicken or mashed potatoes (without dairy--because since I have had this I have found I am lactose intolerant).  I am wondering what other diets people with UC are on to help cope with this.  I am so tired of eating chicken and mashed potatoes, that I need some advice. 
 
Thank you so much for your help in advance, and I look forward to hearing from you.  It will be nice to have people to talk to that are going through the same thing I am. 
 
Troy

UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/30/2008 3:38 PM (GMT -6)   
hey Troy - first, welcome, and sorry you have to join us but people here are really great and super helpful. I can't comment on the itching, but as for your other concerns.... a few thoughts.... I was diagnosed a year ago, at 29, and I too felt like my life was ending, like everything had stopped. but the thing is that that is temporary, I promise. for many UCers (though not all), the first flare is the worst because you don't know what is going on until you are sick as a dog, and by then things may be quite chaotic. but knowledge is power, and once you know what you have you will learn signs and warnings and management techniques, and hopefully that will keep you from getting so sick again. so, take deep breaths and know that where you are right now is a really hard place but that it gets better. I think we all still have good and bad days - it is a chronic disease so you have to live with it forever - but I know that my mentality and my health are so much better than they were in those early weeks when I was losing weight like crazy, bleeding lots and unable to move.

as for what to eat... when I was at my sickest, I drank ensure shakes that you can get at the grocery store. really, i didn't "drink" them, I sipped them. but they worked well for me. I also ate plain white rice (if you have potatoes, I suggest peeling them first) and chicken with basically nothing on it. sometimes applesauce worked, or gatorade, all the foods you have when you have a stomach flu. where you are right now, you probably can't tolerate fiber, so the trick is to have a "low-residue" diet, which you can google and learn about on-line. for example, I usually eat oatmeal (and still do) but when I was really sick I had to switch to that baby version of oatmeal (can't remember what it is called" that literallly said "safe for babies under 24 months" on the box! It was awful, but again, it is temporary. your diet may be permanently changed by UC, but it likely won't be as restricted as it is right now. also, since yuo're on pred, at some point your appetite may return with venegance, at which point you may be able to eat everything. you will just have to do some trial and error. the most important thing is to drink a lot. the danger with a bad flare is dehydration, so stay well hydrated.

when are you having your scope to find out your diagnosis? will you also have an endoscopy?
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 1/30/2008 3:50 PM (GMT -6)   

Troy-

I am so sorry you are going through this- If it weren't for the support I have encountered here I would have lost my mind.

I have not experienced the itching, but would you consider Benadryl. Definitely mention it to your doctor, maybe it is related to something else

The prednisone should help you within a few days. It is not the best thing out there for you, but it will nip most flares in the bud.

As far as what to eat; that is a dilemma.When I am having a bad flare, I eat crackers, rice, potatoes, bread, and drink juice. I don't have an appetite, so eating these things did not bother me. Once you feel better, your appetite will come back and you can introduce more foods.

You will find out what foods are a no-no for you.

My best advice is to get to the GI ASAP. You need to get diagnosed and given some proper medication quickly.

Good Luck.

 

 

 


Jackie 42yr. old
Pancolitis - dx Jan. 07
 
Remicade- 4th infusion feb. 5th,
Lialda 2 tabs 2x a day,
Rowasa- nightly,
Protonix, 6MP,
Prednisone - tapered to 15 mg,
Lexapro, Synthroid
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/30/2008 5:49 PM (GMT -6)   
First of all, Troy welcome to the forum. I'm sorry you need the support to be found here, but glad you found us.

The itching may be a reaction to the bentyl. It's not one of the most common side effects, so your doctor may not have seen it before, but it definitely can cause itchy skin. You also might want to try an OTC cortisone cream when you want to stay awake. Benadryl is good, but makes a lot of people sleepy.

As far as coping, you've made a good start in coming here. You'll find people in all stages of UC and at all points in coping with it. One way that helps most of us regain some sense of control is to learn everything we can about inflammatory bowel disease (IBD - UC and Crohn's.) You can make a good start by checking the resources at the top of the forum page.

Things that seem to bother a lot of us include fatty foods, spicy foods, high fiber foods and dairy. You'll probably find as many diet recommendations as there are people on this site, because the condition affects each of us a little differently. When we get into remission, a lot of us eat pretty much a normal diet.

I second the advice about seeing a GI as soon as possible. Probably the first thing he or she will want to do is a colonoscopy, to help determine what the issue is and begin treatment. Hang in there, it will get better and you'll get your life back. We just have to be patient - it's a virtue this DD has taught me, for sure.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/30/2008 11:34 PM (GMT -6)   
Regardless if you have UC or CD, probiotics can be very beneficial...the ones that I take daily for my crohns-colitis (crohns affecting the colon) is called primadophilus reuteri made by natures way and it aids with lactose intolerance which I had severely but not anymore since taking this probiotic daily (it also aids with high cholesterol and for women, vaginal health but it's perfectly fine for men to take too).

During a colonoscopy there are a couple of things that can help determine if it's UC or CD that a patient has.

1) with crohns (CD) there are patterns of skipped inflammation with healthy tissue in between inflammed areas. With UC the entire area will be inflammed with no skipped patterns of inflammation.

2) with crohns the inflammation can go through the many layers of the intestinal lining...with UC inflammation is on the surface only.

I hope you find the answers and relief soon.

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


quincy
Elite Member


Date Joined May 2003
Total Posts : 30408
   Posted 1/31/2008 1:22 AM (GMT -6)   
Hi..welcome to the forum.

Has your doctor taken liver enzyme blood tests? If not....call him and request them to make sure all is OK.

The pred could cause itching as well.

quincy
*Heather*Status: mini flare Dec 28... tapered to every second night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


TDougW77
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/31/2008 4:29 PM (GMT -6)   
First of all, I want to thank everyone for thier reposnses thus far. All of the information you have given me has been very helpful. Its also nice to know that there are people out there that have gone through the same thing I am going through. Its comforting to have people that understand what this is all about. My family has been very supportive but they don't quite know what to do, so it is nice to have other people to talk to.

I do know know that my family doctor has consulted with the GI doctor and that they are ordering a colonoscopy. I haven't been able to see the GI doctor yet because I am trying to get Medical Assistance as I do not have the means at this time to pay to see him. So once I get that, then I will have the colonoscopy done.

I do have another question though. I have been experiencing blood in my stool (which I am told is common) but my question is, does that happen when I have a flare up or is that a day by day thing? Its hard for me to differentiate it because I have the pains almost everyday so its hard for me to unserstand when I actually have a flare up since this has been going on for 4 months now and I have the pains all the time.

Thanks again for your help and I look forward to chatting with you all again soon!

Troy

Sherman Tank
Regular Member


Date Joined Jan 2008
Total Posts : 34
   Posted 1/31/2008 4:43 PM (GMT -6)   
Hey Troy,

I hope you find a way to get to your GI and nip this thing in the butt- pun intended. Blood in the stool is totally normal and indicates that you are having a flare up. For me- when it is gone I know Im healing and then when the diarrhea is gone Im in remission. It really is like having a stomach flu for what you can eat. Bland bland bland. You might want to keep a food journal to see what aggravates your symptoms.
as for the itching- I know my hubby gets super itchy and thus can't sleep when he is stressed. My sisinlaw who is a burn survivor (they itch horribly) uses Benadryl-says its the only thing that helps.
Good Luck!
Diagnosed proctosigmoiditis/ UC 2004
Misdiagnosed with just Hemeroids since I was 12!!
Bad flare after birth of first son in 2004,
another bad flare pregnant with 2nd baby summer 2006
recent reallly bad flare Dec 2007- 1st time w/ prednisone
Just tapered off Jan 20,2008, Flaring again today :(
Asacol for last 4 years 3pills 2X's, ROWASA as needed up to 3X's a day,
now just ASA 3X's a day


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/31/2008 5:54 PM (GMT -6)   
the blood is only while flaring. you should be able to get into remission at some point, and then you won't have blood.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 1/31/2008 6:20 PM (GMT -6)   
Troy, Hi and welcome, I have your problem every now and then. I have alot of allergies and after I was dx with uc the itching got alot worse for me not always but sometimes so my doctor gave me a perscription for hydroxyzine hcl 25 mg. It works really well for me. it might be something you could try good luck.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


Lindy
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 2/6/2008 6:51 PM (GMT -6)   

Troy,

I also am a new member & by joining this forum, I feel I am finally taking charge of my own health problems.  I've had many health issues after having my children(on a side note----childbirth did my body in.)  My bladder dropped, my colon prolapsed, I had neck surgery for weakened muscles, and now I have interstitial cystitis & ulcerative colitis.  My whole life I have been dealing with one health issue after another.  And I keep going on----hoping someday my life will get better.  Yes, I get depressed, frustrated, but now I have a group of people who I can talk to about that have the same problems I have.  It is GREAT!!!!  My doctors have always been sympathetic but none of them have seemed to really understand what I am going thru.  It's good you found this forum early.  I wish I'd found it years ago.  These people have talked about so many things that I've never been informed of before so when I go to my dr., I can ask many questions which may lead to an improvement in my condition.  Good Luck & anxious to see your next posting.


chili123
Regular Member


Date Joined Jan 2007
Total Posts : 300
   Posted 2/6/2008 7:19 PM (GMT -6)   
I understand how hard it is to be able to eat when I flare. That is the biggest thing for me and feeding your body is so important. I also do the ensure shakes although they seem to give me worse "d" but I feel like the nutrition is more important. I have also found that the SCD can really help. I use to follow it 100% and was doing really pretty good but then flared and got off it but I am still like 90% on it. I do believe that there are foods that do not digest as well and sit in the colon (which is bad to have food just sit there in an irriated colon). I also find, for me, that gatorade and poweraid etc gives me more "d" so to stay hydrated, I make the SCD electrolyte drink. You have to deal with the taste and you get use to it but I think that alot of the "not feeling good" can come from being dehydrated. I also think, too, that the prednsione will kick in for you soon - prednsione has worked really well for me so I hope that you get your flare under control soon. It is alittle bit of a roller coaster so just gets lots of rest and know that there are alot of people here for you to talk to.
Pancolitis - July 2006
Medications:  Predisone - 5mg ,asacol - 12 tablets per day
Supplements:  multi-vit, calcium, folic acid
My wish:  get off prednsione....been on straight since 8/2006


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 2/7/2008 9:20 AM (GMT -6)   
Side note: "SCD" is the Specific Carbohydrate Diet. You can learn more here:

http://www.scdiet.org

You may also wish to investigate the dietary recommendations in Listen to Your Gut and The New Eating Right for a Bad Gut.


Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 

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