Husband diagnosed with UC this morning

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!

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

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.

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

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

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

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

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.

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!

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 ...