Husband diagnosed with UC this morning

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#1Chloe
Regular Member


Date Joined Nov 2007
Total Posts : 20
   Posted 11/2/2007 3:58 PM (GMT -7)   
This am after colonoscopy, my husband ( 62) was diagnosed with ulcerative colitis. This afternoon he started on Lialda and this evening the Rowasa. Oh yes this is a new world......... I mean if we travel we need a whole suitcase for the Rowasa......... no?
HELP!
How may I be supportive. The physician said eat normalluy but that is not what i am seeing here........ I think I must explore some dietary measures don't you think
Anxious Chloe

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 11/2/2007 4:19 PM (GMT -7)   
Chloe - welcome to HealingWell! We're sorry you had to find us, but glad you did :) This is a very knowledgable and supportive group.

Chances are that your husband will not be on Rowasa nightly forever. There is a tapering routine after his condition is stabilized. So, if traveling, you might not need a WHOLE suitcase for the Rowasa :)

That brings me to the questions! What are his symptoms? Where in his colon is his UC? How many Lialda per day?

You're doing a great job of being supportive so far! Learning about the condition is a huge help to us UCers.

Diet doesn't cause UC, but it sure can cause some discomfort. Personally, I have cut out all carbonated beverages. They cause me major gas pains. When I'm flaring I try to eat foods that don't bother me - which in my case (UC is very personal and can vary from person to person) means:
-no raw fruits and veggies,
-make sure any fruits and veges are cooked into oblivion and are 'fork tender' meaning you can squash them easily with a fork,
-cut out most sugars, especially any artificial sweeteners,
-eat smaller meals with frequent snacks to avoid "over-loading" the colon,
-keep a food journal to see what foods effect the UCer more than others,
-cut out those foods until UCer is feeling better then try in small quantities.

Keep the questions coming - they're the easiest way to learn :) Also, many find it useful to look through old posts for information.

See you around!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Forvia and a Probiotic
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
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JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 11/2/2007 5:13 PM (GMT -7)   
Hi Chloe. I am so sorry about your husband. The best way to learn to be supportive is to hang out here and learn as much as you can from the "experts". I have 2 kids with UC and my support is probably a bit different than that of a spouse. I often sit in the bathroom with my little one and we do hidden picture searches and I read her stories. My son is too old for that, but I do whatever I can to keep him happy when he is flaring (rent movies, video games, etc.)

With my son, diet has not really made a difference. When I feed him bland and cut out "fun" foods, he just gets really skinny. When I let him eat pretty much what he wants (I do limit soda and candy) he holds his weight better and is happier. My daughter is newly diagnosed and we don't really know what she'll need diet wise. We do know that she is lactose intolerant so that is something we watch.

Just be available to your dh and ask him what he needs and what you can do to help him. I hope his disease if mild and he reaches remission soon and stays there a long time. Both my kiddos are in remission at this time and we are savoring every minute of it!!
Julie - Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Biotin, Vit/Min
& Daughter 8 UC dx 08/07 Colazal, Prednisone, 6MP, Iron, Vit/Min.


philly-fan
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/2/2007 5:27 PM (GMT -7)   
Chloe, sorry you and your husband have to deal with it, but you are in the right place to learn from a great bunch of people with much experience.
Everyone is different.
I think diet is big when I'm not in remission.
He will have to find out things by trial and error. I think the best way to go is to eliminate things that may be bad for you and add them back in to your diet one at a time.

What's bad for me is
alcohol
red sauce
peanuts-they are abrasive and bad when you are in a flare.
spicy foods.



I think bananas are good for me.
probiotics are good.
Stress is BAD.

Good luck
Steve


Asacol 1200mg-3x a day

Probiotic=metagenics ultra flora plus DF

Hydrocortizone when needed

Off the prednesone since September 8th (omg)


Heart meds

Lipitor,Toprol, aspirin 81

synthroid


Harpo
Regular Member


Date Joined Jul 2007
Total Posts : 262
   Posted 11/2/2007 5:31 PM (GMT -7)   
Chloe.. I wouldnt hang around this place.. Not yet at least.. It's too far out there right now for you.. Listen to the doctor and come here if things dont work out..
Male 36yrs old. Indeterminate Colitis 6 yrs.


Pro-bio

Protonix
multi vitamin


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 11/2/2007 7:11 PM (GMT -7)   
Chloe, I expect two of the more difficult things may be that most of us have pretty low energy levels when we're flaring and because of all of the ramifications of the disease, we're prone to depression. There'll be times when you're sure he's playing you, that he could help out more than he is doing at home. Probably he can't. It's amazing how a day at work or sometimes just a trip to the market can exhaust us at times.

He's still the same guy you fell in love with, but it may be a little harder to find him inside the cloak of fear, pain and exhaustion that we all wear at times.
Judy
 
Left-sided UC diagnosed 2001.  Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years! 
 
Now in remission for almost two years. Remicade has been my wonder drug.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/2/2007 7:19 PM (GMT -7)   
Hi and welcome :) Harpo is right to an extent. Please know that what you may read on here doesn't necessarily mean it will apply to your husband. What you read on here is mostly extreme cases of UC even though we do have some that are mild cases too. If your husband has a mild case, there is no need to read someone's post about an extreme case and think that this is going to happen to him too. This may never happen so it's best to not do the what if game.

Uc is very individualistic and what works for one may not work for another. I highly recommend you read all the old posts, read the resource section of this forum and visit www.ccfa.org because the more you know about the disease, the more support you will be able to offer your husband. But please don't hesitate to ask any questions that come to mind.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
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#1Chloe
Regular Member


Date Joined Nov 2007
Total Posts : 20
   Posted 11/3/2007 7:53 AM (GMT -7)   
Thanks so much for all the words. It means a lot. In addition what we are dealing with is a "cold": sore throat, some fever ( all started a bit before the colonoscopy and pills) .......... we don't think related to the UC but who knows?... so working out a regime of pill taking between tylenol, chloraseptic spray and expectorant, with Lialda and diet is a bit daunting at the moment... i must say I don't know if it is wise to continue a planed trip in Jan for 2 weeks to Asia. I mean on the one hand this may be under control in the 5 weeks ( the doctor said )........OR maybe not? I want to be sensible. It is so unbelievable to me that withough any prior symptoms this started 7 am on the last day of September while hiking.
Also I think we should have been folowing a more cautious diet since then instead of "normal". Anyway right now we have started on more bland diet and shall keep track of it. Thanks so much
Chloe

quincy
Elite Member


Date Joined May 2003
Total Posts : 29848
   Posted 11/3/2007 9:46 AM (GMT -7)   
Hi Chloe..welcome to the forum!

I would probably pass on the trip to Asia...at least for the learning phase. If it's not already booked.

Did the doctor take lots of stool samples to make sure nothing else is going on? There are some gastro bugs that can mimic UC.

I would strongly suggest a probiotic. One that could suit your needs of travelling would be Bio-Pro which a few on here recently started to take.  It doesn't require refrigeration and the strains it contains are very beneficial to IBDers.
 
 
You should also consider to add Primadophilis Reuteri for a while....also excellent, but not good for travelling.
 
You've got lots of options available and know it takes a while for it all to get sorted out.
 
I think this is an excellent place for you to be...not all of us are in a dire situation.  Lots of us don't relate health-wise to all members' postings.
 
It's good to be in the know...but you have to keep things in perspective as to what your husbands situation is.
 
You're an awesome support for your husband....that in itself will work wonders!  
 
Keep us posted as to how he's doing.   
 
quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~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 !!!

Post Edited (quincy) : 11/3/2007 10:51:57 AM (GMT-6)


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 11/3/2007 9:53 AM (GMT -7)   
Don't let this illness rule your life. It doesn't have to! I am one of the fortunate ones who has had a relatively trouble-free course with this disease. Your husband may be, too, one of the lucky ones! If you wait to live until all things are perfect, you'll wait forever. Don't cancel your trip.

In a worst-case scenario, if your husband is ill around trip time, your doctor can prescribe a course of prednisone a week or so before the trip, to take during the trip, and he should be okay. Pred has really sucky side effects, but it can often get a flare quite well under control quite quickly -- at least the first time or two that most folks take it. This assumes he's not developed a "resistence" to pred by having taken it in the past for this or some other malady.

I do not agree with the advice that you shouldn't come here. I think what you should do is read everything carefully, here and everywhere on the Net, recognizing that there is a spectrum of this disease from bedridden and needing surgery to having a relatively normal life. Knowledge is power when dealing with just about any issue. You just have to recognize the wide variance of this illness, and recognize that not everyone, everywhere knows what they are talking about, and you have to ferret out the truth - and even ferret out the truth for you and your husband. Anyway, again, I feel like other than taking my meds each morning, I have a normal life -- whatever the heck that is. Your husband may just be fortunate enough to be that lucky as well.

Oh, and diet doesn't have much effect for me. But again, I think you cannot go wrong with trying to address the issue that way. It can't hurt.

Good luck!
Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


quincy
Elite Member


Date Joined May 2003
Total Posts : 29848
   Posted 11/3/2007 10:00 AM (GMT -7)   
I totally disagree with the suggestion of prednisone.... Don't even go there! EVER if you can help it.... and avoid it like the plague. ESPECIALLY if you're going on a trip to Asia!

Expectrant can cause a looser stool...not bad, just is part of getting better.

The probiotc will help big time...especially with the extra cold-ladened mucus (snot) he'll be swallowing.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~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 !!!


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 11/3/2007 11:14 AM (GMT -7)   
See? I respect the heck out of Quincy. She is among a handful of what I consider the most knowledgeable folks here. For her, prednisone is more awful than good. In fact, it's only awful as far as she is concerned. And perhaps rightly so. For her. For me, the limited times I've had to take it (three times, the longest for like six weeks), it really worked to get me out of an otherwise serious health crisis. You may not want hubby to take it while in Asia or at any other time, but you also don't want your husband to experience a bad flare while on vacation in Asia and be unable to get help there.

You really do have to do all the research and come to your own decisions, in consultation with your doctor.

Best of luck to you and your husband.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


quincy
Elite Member


Date Joined May 2003
Total Posts : 29848
   Posted 11/3/2007 7:13 PM (GMT -7)   
I return the same sentiment of respect Mitz.

But....I should explain myself a bit more, which I neglected to do...yes, I believe pred is more bad than good...but it's how the doctors are prescribing it that's part of the bad part. I think it would be best to prescribe it in the 10-day to 2-week tapered course firstly...side effects would be very minimal.

It's a miracle med for sure, I don't deny it. I would personally say yes to the fast taper...only....if it ever came to that point.

quincy


*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~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 !!!

Post Edited (quincy) : 11/3/2007 8:17:18 PM (GMT-6)


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 11/4/2007 7:22 AM (GMT -7)   
It's a Mitz and Quincy mutual admiration society!!!

I agree completely about the pred: Get on, get inflammation under control, get the hell off!!! As soon as possible.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


quincy
Elite Member


Date Joined May 2003
Total Posts : 29848
   Posted 11/4/2007 9:52 AM (GMT -7)   
Chloe...I hope we aren't scaring you off of your plans to travel.
At least there are some options for you.

How are YOU feeling about the recent diagnosis and how is he handling it all at this point?

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~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 !!!


#1Chloe
Regular Member


Date Joined Nov 2007
Total Posts : 20
   Posted 11/12/2007 7:42 AM (GMT -7)   
Well it is now 10 days since getting the diagnosis for my 62 year old husband, and have been following the posts since then and it is all so helpful. My husband started on 4 Lialda each morning and Rowasa each night
I followed the posts concerning generic Rowasa and realise we have generic. The pharmacy will be obtainig the non-generic for to-morrow as even if it is only the bottle which makes for easier management we want to do this... It was so helpful to hear on the posts that as the inflammation eases one can retain the Rowesa all night and for the last 3 nights he has been able to retain all night.

I have to say there is ONLY 1% improvement in his condition overall with continued bleeding and diarhoea, and has continued to lose weight, with accompanying debilitating fatigue. All we have been told to do re food is to eat normally and experiment with what causes upset. Not feeling that this was sufficient guideline, yesterday I bought the book "The new eating right for a bad gut" by James Scala. He seems so sensible and we are going to start a few days of vanilla ensure so as to give the gut a rest. This will be combined with metamucil and probiotics and omega 3 oil capsules....

We shall enquire of the GI person and his internist just who is monitorng his hemaglobin as he was already anemic on Oct 22.

So here is my question? Can you see any contra indications for staying onthis liquid diet for 4-5 days? I mean it all maks sense to us.....
Thanks to you all
Chloe
PS the way we are going I think the writing is on the wall to cancel the Asian trip for January.

sdaless
Veteran Member


Date Joined Jun 2005
Total Posts : 1396
   Posted 11/12/2007 8:22 AM (GMT -7)   
WElcome to the forum! I respect you for trying to learn what you can for your husband. I would postpone the trip to Asia as if heis still having problems he reallywon't enjoy himself and the stress of it may make it worst. Good luck.

Stacy
Current meds are:
 
Asacol 6 pills a day
Lexapro 20 mg once a day
Ativan .5 mg when needed
 
 
 


DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 11/12/2007 10:53 AM (GMT -7)   
A liquid diet isn't a bad idea. I did the scd diet (you can google it for a ton of stuff...) for a year and a half with no meds other than some vitamin e enemas in the beginning and did great. Now my flare is too bad for that, but it was a wonderful year and a half!
This disease is SO hard to deal with in the beginning. It does get easier, though no happier, but he will learn how to deal with it...when to eat, what to eat, what meds are/are not working. And it is very different for everyone. Nothing works for everyone. For a long time I would just not eat during the day and be fine, and then eat at night and get sick (but be well by morn again). I do know people who are on Lialda (or some similar version) and that's it. It never gets worse. I do hope your hubby is one of those.
On the trip, I wouldn't say not to go, though it would be easier right now. If he wanted to take the prednisone, it would most likely clear it up in a few days. But it is nasty and you do have to get off it so you aren't dependent on it.
The best thing you can do I think is find a good doc and that is HARD to do! There are WAY more bad ones than good ones. I'm lazy and it takes 2-3 months to get an appt, so I'm only on my third in 3 years. I just found a TERRIFIC one, and of course he's retiring at the end of the year. Figures. I can only hope the new one taking his place is as good. He did more for me in 3 days (with tests and scopes, etc) than the other docs did in 3 years!
dx 4/05 with pancolitis UC after birth of my second child... meds worked randomly
SCD and vit e enema remission for 18 months and had another drug free baby 10/06
Let flare get out of control and even steroids wouldn't work 7/07 - docs wanted surgery
lialda x4 daily and started remicade 10/26/07
 
 


DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 11/12/2007 10:58 AM (GMT -7)   
Oh, and not that he can appreciate it right now, but it is great he was DX so late. My mom wasn't dx till she was 52 (she's not on meds btw) and if you have to get it.... I know it sounds horrible, but I am very thankful I was almost done having kids, that I was married, gone to college, etc, before it hit me. I feel so bad for these kids who are a year, 8 years, 15 years old that get it and have to struggle for their whole lives (and the "important" and character building part of their lives too...not sure how to word it, but you know what I mean).
So while it still sucks, and noone should ever get it...it made it easier on my to know at least I had gotten this far without it.
Best wishes and love to you both.
dx 4/05 with pancolitis UC after birth of my second child... meds worked randomly
SCD and vit e enema remission for 18 months and had another drug free baby 10/06
Let flare get out of control and even steroids wouldn't work 7/07 - docs wanted surgery
lialda x4 daily and started remicade 10/26/07
 
 


31fan
Regular Member


Date Joined Feb 2007
Total Posts : 34
   Posted 11/12/2007 11:58 AM (GMT -7)   

Chloe --

Sorry to hear your husband's not feeling better.  Re the trip, I would have said to give it a week or two to decide, depending on how he is responding to the 5ASAs.  I for one responded pretty much immediately.  But it sounds like his course might not be as smooth.  Hoping the best for you both ...


Diagnosed with UC in transverse and descending colon in Feb. 2007
Doing well so far on Asacol 800 mg. 2x a day
Also take 25 mg. Paxil, 100 mg. Wellbutrin, 1 probiotic pearl per day

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