Ulcerative Colitis

[Donaldswife]

My husband was diagnosed with Ulcerative Colitis a few months ago, and is still sick. Anyone else out there have this, know anything about it? He is starting a round of steroids today, and I am hoping after 3 mediacation switches that this will get it under control. We really don't know too much about all this. Any advice, or words of encouragement for the steroid treatment?

 

[cybrkitn]

I have had it since the age of 18 (so 21 years) and was on cortisone enemas for a while. However, b/c I was afraid of getting hooked on them, I stopped using it. It did help while I was using it though.

Mine I believe is caused by eating too much cheese (when I do is when it flares up). For an aunt of mine who passed away last year, for her it was eating pork that would cause her's to flare up (yep, it's heriditary on my father's side in my case).

Mine has been painful at times and I can be indiposed for at least 20 minutes. However, the last time mine flared up was after I had given birth to DS7. I haven't had much of a problem since then.

Obviously, I'm leaving out a lot of info b/c of the TMI nature for a public message board. There is a commercial I have seen on T.V. about it and it talks about a web site for more info. You may want to Google Ulcerative Colitis to get more info.

 

[PixieTopaz]

http://www.disboards.com/showthread.php?t=2434803

This thread has a bunch of sufferers on it

I've had it 25 years. Its been in remission for the last 10
I take Pentasa daily
Going on a major bland diet helps
Also stress is a major"trigger"

 

[Tess]

My husband was diagnosed with Ulcerative Colitis a few months ago, and is still sick. Anyone else out there have this, know anything about it? He is starting a round of steroids today, and I am hoping after 3 mediacation switches that this will get it under control. We really don't know too much about all this. Any advice, or words of encouragement for the steroid treatment?

There was a thread started a while back by folks suffering from gastrointestinal issues. I haven't seen it pop up in some months.

I have ulcerative colitis (or Crohn's--tough call on the correct diagnosis), but have not had to go through steroid treatment, yet. From what I have read through this support board in particular; the steroids tend to help pretty quickly when one is going through a particularly nasty flare. Failing that, some folks require hospitalization to end the flare.

I know how rotten I felt when I went through a nearly year long flare and your poor husband must be in rough shape. Flares zap you of your energy and make you feel so lousy that it is a wonder one can function. With the right combination of medications, and sufficient length of time for them to work, ulcerative colitis can be managed in most cases.

I can certainly appreciate your frustration and I have also found the gastroenterologists to be less than helpful in understanding my issues. For the most part I think it is because with ulcerative colitis, every case is different and it is a trial and error treatment plan. Triggers are different for each individual or there may be no known flare trigger at all.

I would encourage you to research the disease on your own and gain as much knowledge as you can so that you can ask relevant questions of your husband's GI doc. healingwell.com is a great site with loads of information. It's a good starting place.

Hope your husband heals from his flare soon.

 

[Donaldswife]

Thanks to all of you for the resources and encouragement. I really appreciate it. We didn't know until he started feeling bad that something was wrong, or what it was until after the colonoscopy. He has basically been flaring since the end of December, and it is starting to wear on the whole family, especially him. It is hard to watch the person I love reduced to something that is not "him" and not be able to really do anything. I am just hoping we can get it under control and get him to a point where he is functioning and not just going through the motions each day to get to work and come home and sleep until tomorrow.

I will definitely check out some of the webistes mentioned to gain some more knowledge. To all of you who are diagnosed with it

 

[daisyduck123]

DD15 was diagnosed about 18 months ago, after spending 17 days in the hospital (all this was while we were actually supposed to be in WDW for a Thanksgiving week trip). She had lost so much blood that when first admitted, she required 2 blood transfusions.

Upon release from the hospital she was on steroids for 6 or 7 months. She HATED the steroids.

Now she is on daily doses of 6MP & Asacol. This seems to be a good match for her and she has only had one flare up (13 months ago) since diagnosis.

I am wishing your DH much luck. The beginning is rough. It's trial & error with the medicines/dosages, etc...but once you find the right thing, it is a wonderful feeling.

 

[tommya60]

I've had UC for over 25 years, the beginning was a mess, but I've been serious flare free for years. I carry Imodoium everywhere I go, it's in every car, at my dad's etc. It's a huge help for me to nip a flare in the bud. For me, higher fiber, low fat diet helps tremendously. Limiting Coca Cola (caffine) helps. Learning to manage stress helps. I tend to worry like a crazy person at times, I've had to learn to handle stress.

It will get better, especially when your husband determines the things most likely to trigger a flare. Keep in mind that flares can happen even when you avoid all the "flare items". Flares make you feel like crud. No energy, uncomfortable just miserable. For me a warm bath helps, so does chicken soup, and I tolerate Gatorade really well. I don't drink most fruit juice, especially not apple juice and nothing on earth would get me to drink a glass of milk. I hope your Dh is feeling better soon. I haven't taken steriods in years, but Pentasa is my BFF.

 

[scjo68]

I am so sorry your husband is going through this. I hope it is well-controlled soon.

It seems that most of the folks on this thread have had lots of success with medication so hopefully that is all he will need as well.

I did not have a similar experience. I had a very fast onset of very severe UC, that never did become controlled. This reference to "flares" that people here get is one that never applied to me at all. My Dr. tried Asocal pills, Pentasa, Rowasa,( the same medicine as Asacol but through other "avenues" , as well as steroids. First steroid pills, then daily IV steriods, then 2 times daily steroid IVs. I was so sick and weak, and in pain, that I was hospitalized for weeks, taken off all food, and recieved several transfusions. And drugs. Many more drugs. Meanwhile my Drs. were clueless about what to do next.

FInally, they called in a surgeon, and long story short, surgery was absolutley the answer for me. I hope, hope, hope, that your husband never even has to think about it, because the surgery was very major and very hard. But it absolutely cured me. My surgery was ten years ago, and I've not had any more issues with uc since then.

I only bring it up because it took forever for my Drs to call in a surgeon, and I'd wished I had heard of surgery, just as an option, much earlier. They truly seemed baffled that my I wasn't being cured in the usual timeline. I was too sick to really research or comprehend it for myself at the time.

So I guess my advice to you is to be an advocate for your husband, help him learn what his options are. My husband is wonderful, but he wasn't very assertive with Drs., so he wasn't much help in that area.

Again, I am not trying to be pessimistic, just letting you know that there is support and there are options available even if his management of UC doesn't go as smoothly as most.

Wish you both the very best!

 

[amberg@eastlink.ca]

dx'd 16.5 years ago at the age of 15...can anything be worse when your 15? seriously a bowel disease in high school? lol but now it doesnt bother me to discuss it openly...k not that open...but i can answer questions without blushing. more people have it than we know. my first job about 25-30 of us had some type of ibd/ibs. insane!

im on the roids as we speak in an active flare since last year. very stressful. have him avoid stress at all costs, it will make it worse, have him monitor what he eats- he'll learn his triggers soon enough. he will need lots of sleep as an "attack" wears one down...if he has significate blood loss accosiated then this will probably be worse as he'll most likely be aneimic. bad side effects i get from steroids: weight gain, insomnia, heart burn, unbelieable hunger hence the weight gain, sweats, bursts of insane energy followed by a bout of stomach cramps where i just want to curl up in a ball and die..

best advice i can offer, sleep, have him drink lots of water, this has helped me immesley...the only time i drink pop- out at the movies or at the world! heating pads help me, i often curl up with it at nite and it relaxes the cramping. tylenol used to help until i took so much it didn't alleviate the pain any longer. and finding a wonderful gi...my second was awful, but the one i have now is amazing!

rite now im also on imuran(my maintenance drug), awaiting for something to kick in and calm me down. im praying for no accidents at disney. one benefit, i can locate a bathroom in about 2-3 minutes if need be...this nose, knows! lol

good luck, thank you to you for being a supportive wife...you're in this as much as he is, and a lot will fall to you, a lot of people cant/wont do this. my dh is wonderful in this regard. i had uc before him, but he knows that i cant be 100% all the time, and he often has to take over parenting the kids. he knows if i dont get adequate sleep and rest i'll land in the hospital.

 

[Inigo]

I like the IBD Sucks message forum at http://qurlyjoe.bu.edu/webx?14@31.pos1eHQPmc8^1@/ for Crohn's and UC information and others' experiences.

It's not a "pretty" formatted board like this one, but it's got a ton of good information.

---CD diagnosed 18 1/2 years ago= 45+ Remicade infusions, 3 abdominal surgeries, and too many steroids

 

[klynn]

My brother was diagnosed a few years ago in the month of August. The following month in Sept. he almost died and had to have his colon removed due to toxic megacolon. Be aware that this can be very serious.

 

[Aimeedyan]

I have Crohn's, the other form of IBD, and find the HealingWell forums to be helpful to me - esp when I'm nativigating something new (medication, surgery, procedure, etc).

I think most people with IBD really struggle in the beginning, even after you finally get a diagnosis (which can take years!). The disease is very different from person to person. What works for me won't work for the next person and it's trial and error. Sadly, that involves a lot of frustration, pain, exhaustion, and time when you're already feeling yucky.

 

[PixieTopaz]

but Pentasa is my BFF.

And a very expensive friend

I was on steroids in the beginning because of alergies to the Sulpher drugs-which is all they used back then. Hated it-mood swings, "moon face"-yuck

I am thankful for all the modern drugs, but now have high deductable Health insurance and it gets pretty expensive

 

[Donaldswife]

And a very expensive friend

I was on steroids in the beginning because of alergies to the Sulpher drugs-which is all they used back then. Hated it-mood swings, "moon face"-yuck

I am thankful for all the modern drugs, but now have high deductable Health insurance and it gets pretty expensive

We have high deductible plan as well, we have already reached our max out of pocket for the year and have a couple of the big bills on payment plans so we can pay them monthly as the money is deposited into our HSA. This is definitley an expensive disease.

Thanks again to everyone who has posted. I have been perusing some of the recommended sights and it has been eye opening. Hopefully we will find something that works for him. I will say the last few months have been exaughsting for me, but I know they have been a LOT worse for him and I am trying to be supportive. He has always been there for me, and I am glad I can be there for him, I just wish there was something I could do to make him feel better.

 

[powellrj]

My DS has Crohn's and has found that Probiotics work best for him. He also found that artificial sweeteners can be a trigger so he avoids anything with artificial sweetener.

 

[Inigo]

My DS has Crohn's and has found that Probiotics work best for him. He also found that artificial sweeteners can be a trigger so he avoids anything with artificial sweetener.

The only artificial sweetener I can use with no problems is Splenda.

 

[Tess]

We have high deductible plan as well, we have already reached our max out of pocket for the year and have a couple of the big bills on payment plans so we can pay them monthly as the money is deposited into our HSA. This is definitley an expensive disease.

Check with your doctors if you have a high deductible plan and little medication coverage. Oftentimes the docs can give you samples and/or connect you with a plan through the drug companies that will cover the cost of your meds.

 

[Donaldswife]

Check with your doctors if you have a high deductible plan and little medication coverage. Oftentimes the docs can give you samples and/or connect you with a plan through the drug companies that will cover the cost of your meds.

Thanks! We have switched meds since the $575 a month drug didn't seem to do anything anyways. We have one of those cards for the new drug, and my husband is now doing well with the steroids. We will see if that continues once they start to wean him off next month. I am hoping for the best.

Thanks again to everyone for their advice and support, it's nice to know you are not alone when something like this starts.