Meet Amanda:
My husband is 31 and diagnosed with ulcerative colitis Sept 2014. He has had 2 colonoscopies and one endoscopy . He is one of the healthiest people I know and never expected him to get such a terrible disease .
Some more background:
He enjoys working on cars, riding motorcycles & four-wheelers and worked out 5 times a week. Now a days he is usually too tired to work out. He is one of the most health conscious people I’ve ever met. My husband takes pride in everything he does and I want to do anything I possibly can to help him.
Symptoms:
Currently he is experiencing bloody, mucus diarrhea. Some days he says it feels like hot lava coming out. He goes to the restroom 15+ times a day, although some times it just ends up being gas.
The Story:
Being diagnosed 7 months ago it’s starting to take a toll.
My husband feels defeated. He was put on Apriso for 4 months , 4 pills a day, and remission was not achieved.
For inflammation he was given predisone, he started at 40mg and decreased by .5 a week. When he got down to 20mg his blood and pain came back so since has been on 40mg. He is now on humira and will take his 3rd shot Wednesday. When he started the Humira I stopped his Apriso, but after a week or so his pain and blood and mucus all came back. I have had horrible communication with his doctors office and when I called and left message for the lady that deals with the humira there, she never returned my call. I needed to know if he was suppose to still be taking the Apriso until his Humira kicks in.
I have since started giving him it again and he is slowly showing signs of relief.
Does anyone else take Apriso or a different type of mesalamine along with Humira?
Does anyone take humira with any advice? I want to look into changing his doctor because I have had such difficulty with this doctors office i just don’t know how hard it is to switch. I don’t want any of his prescriptions to be interfered with in the process.
Meals are still a trial and error game. So far red sauces, deep fried foods, high fiber and orange juice have not settled well. It is just so frustrating because one day he can eat something and he will feel fine so the next day I’ll make the same meal and it tears him up. Fish and rice have seemed to be the best for him, but you can only eat so much fish and rice . I also read that green tea is good for UC so I make him a hot cup of tea with honey in the mornings and before bed.
Medications:
Apriso 4 pills a day
Humira -injection every other week
Predisone 40mg
Iron supplement
Vitamin D
Vitamin C
Probiotic
Prilosec
written by Amanda
submitted in the colitis venting area
my husband was diagnosed with ulcerative colitis in September of 2014.
Hi Amanda,
Thank you for sharing and for being so actively involved with trying to get your husband back to good health which he like everyone else deserves. Big pat on the back for sure.
Some suggestions and changes I’d make or at least consider:
1) Read the Humira reviews page: https://ihaveuc.com/humira-reviews/
There is Lots and lots of info from other UC’ers there who have taken that medication or are currently taking it and you will for sure learn lots from the reviews others have left. it’s updated whenever someone leaves a new review as well.
2) Definitely consider a doctor change. If your/your husbands phone calls to the staff at the office are going unanswered…that doesn’t cut it. And its just not acceptable and probably is making whatever the issues/questions are even more stressful to your husband and you. To help with that, feel free to read the doctor reviews page. There is a master list of reviews of doctors worldwide. Every city in every country is not listed, but there’s a good chance you’ll see a doctor close to you. And again users of the site have added to this list over the years with personal reviews from UC’ers and their GI docs. Here’s that page: https://ihaveuc.com/find-a-doctor-near-you/
3) I would stop the Green tea right now. Instead I’d move over to an herbal tea or ginger tea instead. At least until the symptoms clear up. I wrote a Ginger Tea post here: https://ihaveuc.com/ginger-tea/
4) Prednisone use long term is not something anybody (with UC or not) should be doing. Especially at a dosage of 40mg/day. Relying on high doses (or any amounts of prednisone) to control UC for months and months at a time is bad. Unfortunately there’s no other way to put it. You can talk to any doctor about this and they will tell you the same. Maybe you already understand this about prednisone, and I understand the desire to keep using it when its the only thing that’s working, but other options have to be found.
5) Take a moment and watch this video I created a few years back. It was directly about what I ate to end a flare without using medications, and you might find some similarities and differences into what your husband currently eats.
https://ihaveuc.com/the-colitis-flare-beat-down-party-getting-out-of-my-flare/
Lastly, and most importantly, hang in there. Don’t for a second lose hope that your husband won’t get back to a happy lifestyle where he’s excited to be alive and to wake up each and every day. The first year after just about everyone’s diagnosis is often the hardest. But things will become better in not too long. There are many options with medicaitons, alternative therapies, surgeries, and diet, and there are different doctors who believe in different things too.
Wishing you both the best,
Adam
So green tea is not good for him. This is where it gets so defeating,I understand this disease affects everyone differently but I feel like I do so much research on things and then they are wrong
I’d expect 40mg of pred should help somewhat. I’ve taken more than this to stop a flare though it is something to talk to a doctor about. I think you need to look a for a colitis specialist in your area.
Are you doing blood tests?
Cheers,
Peter
Peter,
40 mg of prednisone def does the trick for my husband when he is in a flare . it’s when we try to decrease him that the pain comes back,usually at 2 1/2 pills is when the symptoms start to come back bad. I just have read horrible things about prednisone and obviously would rather him not have to rely on it. His doctor wanted to try him on uceris ,but it was too expensive even with our insurance. And blood test,yes I feel he’s had every test known to man. One time I was amazed at how much blood they took from his body…. I swear every time we go to his doctor he says the same thing “how are you doing ” ..”what do we have you on” …”what would you like to try”. I just wanna scream and say we Want you to tell US. . .. And His staff SUCKS at communication. I’m not a rude person and I’m not mean,but when I call your office and leave multiple messages and you never return them and my husband is in the bathroom 20+ times a day ….I get a bit upset with them. He sees a gastrointerologist now but yes I’m looking into switching doctors. We go back the 6th of April and I will be getting his records.(sorry for the rant)
Everything you say and the way that you say it rings so true Amanda…
How your husband feels ‘defeated’. What a perfect way to describe the thing that is UC.
And, the doctors…yes, please YOU TELL US how we are supposed to treat and deal and live with this condition??? We sometimes feel like just another patient in a long list of patients, to the doctor. Sad thing is, that is most likely a fact. The doctors really seem to have no idea what to do with us. Try this…oh, that didn’t work? Let’s try that, then…oh, that makes you feel worse…okay, there’s this new thing that you can take…UGH!
This condition is one helluva long road. I have not been able to take any of the meds, without getting a lot worse than I was. The only thing that has EVER given me relief and long lasting remission is the good old probiotic that I take and a few other doodads like L-glutamine, astaxanthin, and vitamin D.
I am med free for more than 5 years (after taking them for 15 years) and in complete remission. It had=s not worked for everyone and I believe that when you go med free, that you have to be even more diligent in taking the natural stuff. When and how you take things is imperative.
Great post from you…you are a wonderful support to your man. Keep being that because that is HUGE.
Cheers
Oh and I bought ginger tea today and will stop the green tea!
Bev
Thank you for the encouraging words. I’m so happy that people are having success stories because it gives me hope for my husband. I understand it’s a disease that effects everyone differently but it’s so helpful hearing what’s worked and not worked for everyone. I actually ordered him the ultimate flora 80 billion critical colon Probiotic,it should here here tomorrow. His doctor originally told us “take a Probiotic daily,a cheap ones fine.” which maybe for some it is. But I’d rather spend a bit more in hopes it helps more. I’ve read good reviews so fingers crossed it helps him some. !!!!!!! I hope you continue on your none meds path and hope my husband can join u on that pathway soon!
That is my wish for all of us…med free and living again…really living our lives without meds and without the constant worry of UC and all that comes with it.
It saddens me every time a new person joins the site because it means yet another person diagnosed seemingly, for life. I am happy, though, that this site exists for all of us. It’s a great place to meet and swap stories and experiences.
All the best to your husband and yourself Amanda.
What did the colonoscopy depict?
That his whole colon is inflamed with ulcers.
Dear Amanda,
I am not a UC spouse, I am the one with UC that never goes into remission by itself since 1994. I married my husband in 1995. My disease has been aggressive, at times embarrassing and quite often debilitating.
The best thing hands down that has helped me was my loving and patient spouse. He learned early on how to very quickly find the cleanest, closest restroom while traveling. One of my symptoms is painful joints and arthritis swelling. He is always kind and thoughtful of my limitations. Your husband is blessed that you are concerned and want to help him feel better.
My advice to you is this is not a death sentence. It takes a while to get the meds right (I’ve taken remicade for 15 years now and that works for me) and there will be some hard days, but life can be full and for a 43 year old woman, I am extremely active (I just hopped off the backhoe to take a break…I’m digging for a swimming pool here). One goal once he gets stabilized: Very slowly taper off the prednisone. It is nasty stuff long-term.
Also, find a doctor that will work with you and is assessable. If you can’t get responses to your questions quickly, move on. I have wasted months in bed early on because my doctor was unconcerned and unavailable. Read reviews from other patients. My doctor is awesome. Good ones do exist!
You mentioned how healthy your husband was before this hit. I was too. I don’t think that is or was a factor in the disease “finding” you. Be careful about asking why too much. You’ll drive yourself crazy. This is a chronic condition, not cancer. I am glad. I’ve enjoyed so much out of life, I just had to learn to manage the situation. You can, too. Work together and the sun may shine a little differently, but it will shine again. Hang in there.
Cheers,
Jaimee
I hope what I say isn’t too frank, but living with uc is so devastating, I want to say it.
There is a cure for uc. It is surgery.
I was about 30 when I first had symptoms. But it was not correctly diagnosed until I was 32 and in a major flare. I was hospitalized. Two days later a surgeon came into my room and explained what surgery might have to be done. The next morning the crisis came, and a few hours later they took out my colon.
So I have had an ileostomy for 40 years now. There have been some challenges, but nothing, in my mind, compared to trying to live with uc. To be honest, that would take a courage I don’t have.
My best hopes and wishes go to you and your husband as you cope with this health challenge.
does anyone have any advice with cold medicines. I asked a pharmacy and they said my husband could take sudafed(otc) or Tylenol. He’s experiencing head and nasal congestion and sw i flu like symptoms.. I chose the sudafed but he doesn’t seem to be getting any better. Does any also experience the flu like symptoms periodically?????