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Ulcerative Colitis
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Posted 6/5/2008 9:15 PM (GMT 0)
Hello. We are new to this forum. My husband just got diagnosed with UC he is 43 yrs old and has been healthy all his life. He just spent 14 days in the hospital with what the GI doc said was one of the worst cases she had seen in years. Was sick with bloody D for 4 weeks before we finally got tired of the doc not knowing anything and telling him to take immodium, so I took him to emergency. He was in real bad shape.

Anyway we are learning all we can about this and have some questions the docs don't seem to be able to answer.

What exactly is a flare up????
How long do they usually last and what is involved?

My husband is a commercial crab fisherman and is on a boat in remote Alaska for months at a time and he is worried about what happens if something happens up there.

Help if you can we don't really understand.
Posted 6/5/2008 9:42 PM (GMT 0)
I am sorry to hear of your husband's diagnosis. UC is a difficult disease that is characterized by periods of flares (active disease) and periods of remission. Having come out of a severe flare it is hoped that with daily medication your husband can achieve remission (inactive disease) for a long time. There is nothing about this disease that is predictable so I can't offer you any insight or tricks to maintain good health other than the standard, eat well and get plenty of rest. What your husband recently experienced might be the worse it ever gets, again no one can predict this. There is no standard period of time for a flare or for remission. I think it's important for him to get involved in learning more about this disease by either visiting this website or checking in at www.ccfa.org Knowledge is a powerful tool when managing a chronic illness.

Sue
Posted 6/5/2008 9:43 PM (GMT 0)
I also wanted to ask about weight loss. He has lost 45 pounds in the last month due to this and I am trying to get him feeling better but he needs to put some weight on he went from healthy 195 pounds size 32 to 150 and looks like an old man. It is really upsetting him and I don't want to give him anything with chemicals etc any ideas?
Posted 6/5/2008 9:47 PM (GMT 0)
Thank you Sue. He is having a hard time with this but does not like to read or do this kind of forum info. I was planning on trying to get him to a group meeting but he can't even think about going anywhere yet. He is still feeling awful
Posted 6/5/2008 9:55 PM (GMT 0)
Hi, welcome to Healingwell :) Sue has already given you some great info. Regarding the weight issue, he can try to eat low residue foods several times a day to get his weight back. Now diet is highly individualized so this is just a basic guideline. Have him avoid nuts, seeds, caffeine, alchohol, raw fruits and veggies, spicy foods and heavy spices. Try to stick to a bland "white" diet such as chicken, fish, potatoes etc.  This will allow his colon to heal easier. Also, he is not supposed to use any Nsaids such as Aleve, Advil or Motrin. This may cause intestinal bleeding and intensify a flare. What sort of medication did they put him on?
Posted 6/5/2008 10:15 PM (GMT 0)
They have him on 12 mesalamine daily 40 mg prednisone daily, oemneprizole.

He has been taking Tylenol PM to help him sleep. They were giving him sleeping pill in the hospital and forgot to put that with his meds so he had some Tylenol Pm is that not good?
Posted 6/5/2008 11:08 PM (GMT 0)
Tylonel is fine for Uc'ers. And if it works for him then that's even better :) What is the extent of his Uc do you know?
Posted 6/5/2008 11:18 PM (GMT 0)
He has really sever UC. It was so bad they could only go a little ways in with the scope. They said they will have to wait till it gets better to do a full scope.

He is really having a tough time grasping this because he doesn't see how he can do his job. IE: what happens if he is in Alaska on the boat and has a flare up.
Posted 6/6/2008 1:06 AM (GMT 0)
I can understand his fear. Many of us who have jobs, especially active jobs know the trials of this. Maybe some of them will pop up and offer some help. I don't work and I haven't worked in about 9 years because of Uc. Luckily though, my husband has a good job in which I can afford to stay home.
Posted 6/6/2008 5:54 PM (GMT 0)
Previously, some members have use Muscle Milk - a body building supplement - to help gain back weight. If you use any supplements like that, make sure they don't have any artificial sweetners in them. Many small meals is his best bet. Just watch out! That prednisone can make you eat EVERYTHING in site. It gives some people (like me) the MUNCHIES.

Lean protien, **cooked** fruits and veges - a well balanced diet is best. At this point - as damaged as his colon is - make sure fruits and veges are cooked to fork tender - meaning you can smash them with a fork with no resistance.

Some people use the baby food meant for older babies - stage 3 I believe????

Let us know if we're getting close to answering your questions :) There is so much to know about this disease and doctors don't know the parts that us UCers have personally experienced. Asking questions is the way to learn and knowledge is power. The more you know, the more you can be a partner in your care.

**wow - i must have had a cookie craving at the moment I typed this. I really did mean cooked fruits and veges!
Posted 6/8/2008 3:50 AM (GMT 0)

Hello,  my husband has also just been diagnosed in March of 08.  He cannot seem to get this "flare-up" under control and is worried about his job.  I am a stay-home Mom who has Myasthenia Gravis.  We are trying to get a temporary disability insurance for my husband, but have been denied.  He has lost 25 lbs, has a short normal part of a day and then will experience bloody D, mucous, severe pain from his tailbone to rectum.  His UC is right at the anus.  He cannot hold supp. in (canasa), is trying proctofoam, 40 mg prednisone, and just gave himself his first humira injection last week.  Nothing is working!  He also experiences fevers every couple of days.  How long will he have to suffer and when will the meds kick in and work.  He is living on pain killers just to get through the day and to work.

Thank you for any input!

Posted 6/8/2008 10:06 PM (GMT 0)
Mittens - welcome to HealingWell! I'm so very sorry your husband is having such a time with this darn disease (DD).

Usually prednisone and proctofoam work fairly quickly - HOWEVER, rectal inflammation is the hardest to control. How long has he been oh the meds?

Flares don't last a specific number of days - we all wish they would... At least then we'd have a clue when we'd be feeling well again!
Posted 6/8/2008 11:46 PM (GMT 0)
Dakotagirl -

My husband started balsalazide (4 tab 2x a day) and canasa supp. Didn't help. He then started on 40 mg of prednisone, then 50 mg, and finally 60 mg and proctofoam. Didn't help. Since last week, he has started back at 40 mg prednisone, humira injection once every two weeks and quit balsalazide.

His biggest concern is pain. Is this common? He takes 1 1/2 percacet tablets at a time, every 4-5 hours. I touched his leg while he was in the recliner, and he got a chill that went right to his butt adding to the pain. That is how sensitive his bottom is. I have read that ulcerative proctitis is less threatening with less symptoms, but I think he has colitis as well. His begins at 21 mm up from the rectum??

So we are going on our 4th month with this flare. Before that he just had blood and that constant urgency which is what brought him to the doctor (we have to travel 3 hours to our dr).

Thanks for your reply, I appreciate any feedback!

Mittens
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