Community Forum

 Hi,

My husband was diagnosed with UC 3.5 years ago right after our son was born. He has flareups a couple of times a year and I think they are generally stress induced. He gets really unreasonable and depressed when he is having a flareup and takes things out on us emotionally. Does anyone have any tips for how I can help him? He will not go to therapy or take meds for depression, so that is not an option. I try to not stress him out more, but sometimes the things he says and does are so crazy that I have to say something and that just makes it worse. Just wanted some thoughts.

T

 Reply posted for dayflowr.

hi dayflowr,

my husband of 19 years has had uc since we met.  unfortunately, he was not properly diagnosed until about 10 years ago.  he was told he had hemmorroids, fissures, and other things.  finally, through colonoscopy and good dr's, we determined it was uc.  uc puts not just the patient but the family through very bad times.  my hubby has been on asacol, prednisone, colazal, you name it.  prednisone made him angry, mean and a bit nutty.  he suffered horribly for the last 10 years with cramps, bleeding, depression, etc.  like yours, he was not interested in therapy or support groups, and was embarrassed and ashamed.  family members really had no idea what uc was or how severly it affects.

colazal and annual colonoscopies kept it in check, but still the flareups were bad.

this past march, his colonoscopy came back showing mild dysplasia - not a good sign.  after some serious soul searching, he made the hard decision to have the colectomy w/j-pouch.  that was on july 3, 2008 (2 weeks tomorrow). 

now, he is feeling really lousy.  lost weight, no appetite, difficult to get sleep, in pain.  but - we know this is temporary.  in 8 weeks he'll have his "hook-up" surgery to reconnect the j-pouch.  there is light at the end of this long tunnel, and the best part is he is uc-free.

the decision to have the surgery is personal and difficult - but maybe necessary.  the best thing i can do, and you can do this with your hubby too, is to be understanding, know that is anger or frustration is with the disease and not you.  be positive.  you're here, and that's good.  keep doing your homework and research and you'll be helping him more than you know.

rhonda

 Reply posted for dayflowr.

I am new to this site and have been looking for a way to share my husband's story about his UC diagnosis.  About 6 years ago closer to the holidays my husband became very ill and was losing weight and going to the bathroom a lot.  He also began to bleed which scared us with the sudden onset as this happened over a few months.  The disagnosis was servere UC and they put him on a few medications right away.  During this time I had been researching on the internet about stomach disorders as he had a family member who has Crohns.  It was very depressing to read the outcome on almost all of the sites I visited.

I continued to research with a family member and about two and 1/2 years after my husband was diagnosed with UC he was able to stop taking the prescription medications.  His blood test came back low so he had to stop the medication.  He has now been off medications about 3 years and we are working to continue with no medications unless necessary. 

After the initial diagnosis we made changes in his diet - more restrictive the 1st year but still there are things he will avoid as far as eating and fluids go.  Initially he gave up all carbonated drinks, coffee (and then regular brewed coffee), no alcohol and a more bland diet to allow healing.  We also started him on supplements which we cleared with the doctor who spoke to us about the treatment for UC when he was diagnosed. 

It is odd though that when he had to stop the medications and could stay off of the medications no one asked us what we had done or checked on him as a follow-up to see how he has been doing.

We know this is a lifelong disease we will need to monitor to keep it in remission.  This is not to say that if he eats certain foods or has to much stress he will not notice a little discomfort but it is an on-going process for us to learn how to best control his UC.

Donna

 Reply posted for dayflowr.

Hi, 

My husband also has uc, and has surgery. I understand about the flares, and the rollercoasters.   A couple of things to watch.

  If on prednisone for an extended period of time, (over a year usually) talk to the dr about a slow taper.  Our dr wasn't familiar and it caused my husband to get sick (hospitalized) everytime he went off of prednisone. 

Another option for flares, treatments are the probiotics.  A few years ago they were very new and the drs didn't really endorse them. But they are becoming more accepted. Our dr has suggested taking them when a flare is coming on.  I do know some people with uc that take them all of the time.  They help in restoring the good bacteria in the intestines.

My husband usually has a flare once a year, around the holidays, (stressful time and lots of new foods or sweets and viral infections going around) and usually ends up in the hospital.  But after an iv and shot of prednisone, he is usually better quickly. 

About the depression, just like everyone else says, just try to be there for him.  It is hard to know how extremely miserable they feel a lot of the time. The way I see it, their good days are like we feel when we have the flu.  So I try to help by having the foods that make him feel better around when he isn't feeling good.  (we go through alot of bananas and yogurt around these times)

take care and good luck

 Reply posted for dayflowr.

 Hi, I have had UC for six years now and have always been told how important it is to take the correct doseage. I have had maybe 1 or two flair ups in the past 3 years. I know everyone is different but taking advice from the doctors has been good for me. Hope he seeks help, AS THERE IS LOTS OF IT ABOUT.

 Reply posted for dayflowr.

Hi,

I have UC for 4 years now. Yes stress is a part of it...but mostly its very emotional for anyone to go through what we go through. Talk to him and ask him how he feels and try to put yourself in his spot.I think positive everyday that do will be a normal day and smile. Therapy maybe an option for him but then he doesn't want to go...so i would tell him to seek others with his condition. He is not the only one out there with UC and going through the same syptoms or worse. anti depp. meds are not good! he is only be make self happy by medications. You want him to be happy for himself not meds.

 Reply posted for DKH.

 How many circulation problems might result from Crohns?  Has your husband had problems with leg cramps?  I have severe leg, (calf & thigh), cramps at night.  I am also up every hour or two to urinate, if I dont go, my abdomen cramps up.  All that goes away when I am up and active during the day, but my fingers and even my feet will cramp then.   I Told the GI doc, but none of this seemed to be of any concern to him.  Have you heard any thing like this?  Do I need to try to get in to see a hemotologist?  Any suggestions will be greatly appreciated. 

 

 Reply posted for dayflowr.

 I really feel for you.  I was diagnosed with Crohns about 4 years ago and it is tough on both ends.....being the patient and being the loved one.  I can tell you this that the prednisone and other meds will make him have bouts of irritability also.  Steroids are a nasty little drug but oh so necessary for us.  I have a friend who was diagnosed years ago with Crohns and he swung from one emotion to the next and always seemed to be in a chronic flare but now that they have finally found a drug that helps with the flares he is doing much better and his emotions are finally in check.  I know it is tough for you but you hang in there.  There are some wonderful support groups that the CCFA sponsor and he should check on going to one.  It is nice to know that you arent alone and it really does help.  Never a good idea to cut his dosage without the drs approval either.  All I can really tell you is lots of prayers and try to be as patient as you possibly can.  

 Reply posted for ErinD.

 I wish that he would consider some type of couseling or support group, but he is a firm believer in being able to handle things himself. He hates being on medication, not to mention how expensive the one he is taking is, so tends to cut his dose after he has been feeling good for a few months.  It is frustrating because I think he gets flareups because he has lowered his dosage, even though he has been taking the lesser amount for months. I just wonder if he would have them at all if he kept at the correct dosage.

 He just got some prednisone to help with the flareup, so he should be back to himself in a week or so. 

Thanks for the insight.

 Reply posted for dayflowr.

 Hi,

I have recently been diagnosed myself with UC after going through an 8 month flare.  It is very taxing and stressful on your mind and body to go through a flare and i admit it is very easy to get short tempered with your loved ones as well as depressed.  I always knew how hard it was on my family and i was so appreciative that they were supportive of me during that time (even though i didn't show it).  I also did not go for help or try antidepressants because i knew deep down once the flare stopped i would be back to my  old self.  I know how hard it is for you and your family and i wish i could offer you some advice but just don't feel that you are alone in your feelings.  Would he consider doing some family counseling or maybe finding an IBD support group in your area?