Will I ever be able to eat normal food again?

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FUNMOMMA
New Member


Date Joined Dec 2007
Total Posts : 13
   Posted 12/23/2007 6:40 PM (GMT -7)   
   I was hospitalized on 11/04/07 and diagnosed with UC after a colonoscopy on 11/08/07.  They put me on Asacol and prednisone and when I left the bleeding had stopped.  Since I've been home I've been bleeding again and having a lot of pain, and it seems the more pain I have, the more I sweat and the faster my heart races.  I can have the smallest bite of something and really pay for it.  I was just wondering if I'm ever going to be able to eat normally again?  I'm just learning how to live with UC so any advise would be greatly appreciated.  I do know what foods to avoid and what foods to eat I'm just getting sick of all the blan food.
                                             
Diagnosed with: UC 11/08/07, ApL 5/11/98, and Lupus in 2000.
Asacol 4/400mg tabs 3xday, prednisone 1/20mg tab 2xday, hydrocortisone enema nightly, multi-vitamin, probiotic, calcium, iron, Aloe Elite, Ambien CR as needed.   

Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 12/23/2007 6:53 PM (GMT -7)   
It's kind of hit-or-miss as to what bothers individuals, but fish is usually well tolerated, especially salmon. I find avocado works well when I am in a bad flare. Eggs are also a good source of protein. Avoid fibrous foods, seeds, gassy vegs, such as brocolli, peppers and onions. Green beans tend to be okay for many people. Sushi is good as well, believe or or not.
 
If you're on Prednisone make sure you get plenty of calcium, use supplements if you can't tolerate dairy, but yogurt is good, the its probiotics are very beneficial. I find Viactive cheese with probiotics is a good source of protein and calcium.
 
You also need to watch your Potassium when on Pred, so try to eat a banana or two every day.
 
Meesh

Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97;
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, was almost off, back to 40 mg; 12/1/07 - 12/29/07 weekly Venofer (iron sucrose) injections; 9 mg Entocourt EC; Xanax as needed; Lexipro 10 mg, Rowesa; Asacol; Colazal three 750 mg capsules 3X day; Bad reactions: Imuran( 2/07)


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 12/23/2007 7:31 PM (GMT -7)   
dont worry. i was in same situation with hospital and food... u will be normal again.
just hang in there!

resource fruit drinks (juice box) are like a full meal supplement and they really helped me out in hospital and when i got out.
same with ensure. those are like full meals as well. you just drink em and your good to go and they are easy on the gut.

jello is good too.
bland food sucks, but do it for a bit until you can start to tolerate a little more.
if you give your colon a bit of a rest, it can heal some and then you can eat other things much easier.

its trial and error tho. everyone is different and everyones UC is a bit different as well.
good luck.
and merry xmas!
steph - 31 year old female - diagnosed UC in 2000
started as proctitis and now is pancolitis..this year long flare is now severe on left side only to splenic flexure.
last 4 days have been fabulous with no UC symptoms at all = remission (yey!) 
tapering pred = now on 20mg prednisone 1x day with breakfast
1000mg mesalazine 2x day - 1/2 endone every 6 12 hours for pain (weaning)
calicim, inner health plus (probiotic), fentalyn patch for pain and to wean off oxycodone
VSL#3 didnt work - Aloe Elite didnt work - Budesonide didnt work
ive lost 40+lbs and my legs look like sticks ... ewww
 
 


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 12/24/2007 6:28 AM (GMT -7)   
It takes time - as boring as it is you eat only those few foods that you tolerate well - then one by one you can slowly introduce a new one - of course everything is in moderation - hubby has been having more better days than bad ones - I find myself being a bit of a nag at times watching over him and asking him should you be eating this or eating that. It can be annoying I know and at times it upsets him too. So I back off.....he's a big boy if something bothers him more than something else he will hopefully recognize it and eliminate it.

Once you start feeling more normal the behaviour modification tends to slack off and the bad habits of 61 years tend to start creeping back in. Human nature I guess. I have a few weaknesses and if I had to totally eliminate them it would be hard. It's not easy but you either live to eat or eat to live. It's easy for me to say I'm not the one sick with it...I just think I am more disciplined and the pain and everything else that goes along with it would be enough to force me to stick longer to a blander diet.

So while flaring you definitely want to keep a log of what is ok for you and keeps everything on the quieter side. Eating out is the real big challenge and at this time of the year not an easy task. Good luck and I hope it won't be too much longer that you can have some variety in your foods.

Try and have a Merry Christmas.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 12/24/2007 11:34 AM (GMT -7)   
When I'm flaring - it's toast, toast, and more toast.  Then I'll add in some rice or baked potato.   I also try eggs - although sometimes even those bother me.  No vegies work at all - although now that I'm in remission I eat just about anything - within reason.  I still limit my vegie intake and don't really eat any spicy food.  Trial and error is the name of the game.  And like others said - go easy on your stomache - it takes getting used to - but eventually you will be able to eat just about everything again and feel pretty much back to normal!!

KTM


FUNMOMMA
New Member


Date Joined Dec 2007
Total Posts : 13
   Posted 12/24/2007 1:28 PM (GMT -7)   

Thanks everyone for the advice, it's great to have someone to talk to who's going through it or is with someone who's going through it.  It's also great to know someday I'll be able to eat normally or pretty close to it.  Last night even my blan foods sent me into tears, but today is a litlle bit better.  It starting to feel like I take two steps forward and two steps back, has anyone else experienced this?  At first the prednisone and Asacol seemed to work but the more time that goes by the more symptoms seem to becoming back.  I guess I'm just looking for a little hope.    

                                     
Diagnosed: UC 11/08/07, ApL 5/11/98, and Lupus in 2000
Asacol 4/400mg tabs 3xday, Prednisone 1\20mg pill 2xday, hydrocortisone enema nightly, probiotics, multi-vitamin, calcium, iron, Aloe elite, & Ambien CR as needed.   

Horus
Regular Member


Date Joined Feb 2007
Total Posts : 190
   Posted 12/24/2007 7:03 PM (GMT -7)   
FUNMOMMA said...
Thanks everyone for the advice, it's great to have someone to talk to who's going through it or is with someone who's going through it. It's also great to know someday I'll be able to eat normally or pretty close to it. Last night even my blan foods sent me into tears, but today is a litlle bit better. It starting to feel like I take two steps forward and two steps back, has anyone else experienced this? At first the prednisone and Asacol seemed to work but the more time that goes by the more symptoms seem to becoming back. I guess I'm just looking for a little hope.



Diagnosed: UC 11/08/07, ApL 5/11/98, and Lupus in 2000

Asacol 4/400mg tabs 3xday, Prednisone 1\20mg pill 2xday, hydrocortisone enema nightly, probiotics, multi-vitamin, calcium, iron, Aloe elite, & Ambien CR as needed.



Funmomma,

I question highly your use of oral iron supplements. If you are indeed critically anemic then you should opt for iron infusions instead. Oral iron will only irritate the colon. I'd also throw out aloe elite. If your doctor refuses to take you off oral iron supplements then find a new doc. One last bit of advice would be to only take iron supplements with vitamin E and NEVER take it around the time you take vitamin c as iron and vitamin c will form super highly reactive oxygen radicals.

#1Chloe
Regular Member


Date Joined Nov 2007
Total Posts : 20
   Posted 12/24/2007 7:41 PM (GMT -7)   
My 62 year old husband was diagnosed with what is now fulminant ulcerative colitis Nov 2(colonoscopy )after first symptoms ever sept 27 07, started on rowasa and Lialda and then 60 mg prednisone and kept deteriorating:lost 25 lbs since Nov 2 : to begin with a lean marathoner.... and then we went to a specialty clinic and he was hospitalized this past tuesday.............. to-day 6 days later he is tapering prednisone : still in hospital at christmas and responding cautiously well to cyclosporin ( of course we do not know where this is headed)
I think they may be thinking he may be a candidate for remicade... he may come home thursday.
He smiled yesterday for the first time since Nov 2............. What an awful disease.... the prednisone makes him so emotional that it is really debilitating and he cannot face anyone outside the house................ and really though he is despondent he is not depressed...
But we tried various foods and now in hospital he is on a low residue diet ( google it) and though so foreign to us- we never ate this way : it is seemingly what he needs : I am NOT saying that diet is enough... What upsets us is that all one ever needs on the low residue diet is obtainable at boston market: no vegetables and refined everything... we have never even been inside....
However i have to say that he is in the right hands and we are so grateful... However i do wish he were with me this christmas eve...... my son and i will go to the hospital to-morrow morning with smoked salmon
Feeling so sorry for him and for me.....
Chloe
we just do not know what the future will hold....
Prednisone 50 mg
Rowesa at night
Husband diagnosed Ulcerative Colitis Nov 2 07


FUNMOMMA
New Member


Date Joined Dec 2007
Total Posts : 13
   Posted 12/26/2007 5:51 PM (GMT -7)   
#1Chloe- I feel for you, sometimes I think it's harder to watch someone you love suffer than it is going through it. Thanks for the advice, I will look it up. I hope you had a good X-mas and cograts on getting to bring your hubby home Thursday. You know I've been hospitalized for about 16 weeks all together through out my life (I'm 25) the longest stretch was 5 weeks and I was always ready to go before they would let me. But, this last time I was feeling so lousy, I really didn't want to go. What made me want to go home was my 2 1/2 yr old daughter, who until then had never spent more than 2 nights away from me. So, your husband is a very lucky man and I hope he gets felling better soon.

FUNMOMMA
New Member


Date Joined Dec 2007
Total Posts : 13
   Posted 12/26/2007 6:11 PM (GMT -7)   
Horus- I was wondering if you've taken the Aloe Elite and that's why you suggest coming off of it? If so, did you have any bad side effects or did it just not work? As for the iron, I'm currently waiting to see my doctor in the mean time do you suggest I stop taking it or wait. The only reason I'm asking is the bleeding and cramping are getting really bad and if the iron and/or Aloe elite could be contributing to the problem I'll stop taking them.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 12/26/2007 6:56 PM (GMT -7)   
Chloe - I really feel your pain. I had to bring my husband to the hospital against his wishes on Mother's Day - within an hour with an IV and some pain medication he was put out of his misery with the intense pain he was in. (We were fortunate to get there at the exact right time with no waiting and immediate attention) Once he was out o pain.... of course he was very happy I insisted he had to go as I could not bear it any longer. It is very tough for you and him. Hang in there and remember if he gets cranky definitely do not take it to heart. This disease, the discomfort, the meds really takes its toll on them. (Prednisone is so mood altering.)

Hopefully the Dr will find the right medications to help him sooner rather than later. If you have done a lot of reading of posts here you will find so much helpful information. This is an awesome community and resource. It will greatly benefit you and him to get as much info from here as you can to better educate yourself and be the best advocate for your husband that you can be.

Print off info you think is very helpful or take good notes. You may find you want to discuss some of the things discussed here in this forum with the Dr. My husband just doesn't get on the computer much at all as he did in the past. I report to him info that I think is relevant and we discuss with his doctors. When the doctors inform and discuss things with us we are so much more in tune with everything now as we are not hearing something for the first time since I have so much info from others here to compare notes with.

We are retired so I have time to devote to this - in the beginning I was keeping logs of everything. Depending on what medication was being tried and if there was a need to monitor blood pressure we would take it accordingly.

Prednisone meds I kept a very comprehensive log of as he was on and off and on again. Finally off the stuff and I hope he can stay off it for a long time.

I also did a chart relating to the BM's, date, time, frequency, urgency, blood if present, level of pain, log of foods eaten and when to see if any thing in particular bothered him more than others etc.

I always kept his medications on the computer and date them. If you only want to keep one listing going I make sure I print off the most recent one before I make changes. Make the changes and update the date and print off. This way we can always refer back to what he was taking when. At one time it was the same meds for the longest time.... but once the UC came I was updating the list very often. Without the notes and lists to refer to we would never remember from one day to the next...lol.

Good luck to you and your husband. I truly hope 2008 will be a much better year for both of you.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 12/28/2007 6:56 PM (GMT -7)   
the aloe elite made my symptoms worse as did the oral iron. oral iron is bad for the gut and exacerbates UC symptoms.
aloe elite i think is just a money making scam personally. i have met or talked to more people it didnt work for than did.
iron infusions are definitely the way to go!!
thats just my 2 cents.
steph - 31 - female - diagnosed UC in 2000
started as proctitis, went to pancolitis..then went back to left side only to splenic flexure.
last 3 weeks have been fabulous with no UC symptoms at all = remission (yey!) 
prednisone = finally finished!!!  woohoo!
1000mg mesalazine 2x day - 1/2 1/4 oxycodone every 6 12 18 hours (weaning)
calicim, inner health plus (probiotic), fentalyn patch for pain and to wean off oxycodone
VSL#3 didnt work - Aloe Elite didnt work - Budesonide didnt work
prednisone finally made me puff out on my last week of taking it ... bugger!
 
 


FUNMOMMA
New Member


Date Joined Dec 2007
Total Posts : 13
   Posted 12/28/2007 7:52 PM (GMT -7)   
kazygirl-Are the infusions hard t o get because when I was in the hospital they were so worried about my enemia they were drawing blood daily. If my level got any lower they were going to give me an, at the time I thought transfusion, but now I think infusion. It didn't get any lower but, it also wasn't getting any better and I'm tired all the time. I have a two year old I can't be tired all the time. So, would I talk to my physician about the infusions or my gastrointerologist? Thanks for your two cents I appreciate the advice I'm just trying to learn what I can to get into remission.

MoonShadow
Regular Member


Date Joined Dec 2007
Total Posts : 52
   Posted 12/29/2007 3:40 AM (GMT -7)   

What is your definition of “normal” food?

 

Chances are if “normal” food is things like Cheesy Pizzas, Greasy Hamburgers, Coca Cola or Doughnuts – you may have to say goodbye to these for good.

 

When I was sick and on drugs after my diagnoses, I mainly ate plain boiled white rice with steamed spinach and drank filtered water – for breakfast, lunch and dinner - it was very bland and very boring.

 

If you are up to it, maybe you could try a plain vegetable potassium broth? I will locate the recipe and post back. 


MoonShadow.

Australia.

Female 37.

Sick since 1998 – finally diagnosed 2003.

No drugs (last drugs were taken in 2005).

Healing myself thorough diet & natural methods.

Using plant derived MultiGest Enzymes capsules as part of diet.

 

Feeling fantastic!

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