Hubby just diagnosed with Crohn's

[Tiger926]

We have had a hellish 2 weeks, as we were supposed to be in Disney for the next several weeks, but hubby was in hospital all of last week, so trip cancelled. He has had what we thought was IBS (irritable bowel syndrome), for years, but now we believe it might have been this. He has not had bleeding, and just basic symptoms, but this has hit us hard as it means a big change in diet, and now doc wants him on Remicade, which is a very scary drug based on the research that I've done. We also aren't sure if we are covered, which is scary as well...

I have read some older threads on here about Crohn's, but we are still a bit overwhelmed, especially since his specialist is very concerned. Good news is that his large colon is great at the moment, but he has an aggressive case in his small intestine.

Anyone with any words of wisdom for us? Thanks, Tiger

 

[karliebug]

My daughter is 21 and has crohns. It is a nasty disease. She has been in and out of hospitals since she was 10 and takes many types of medication to try and control her symptoms. Diet is tricky because what is okay for one patient may be a trigger in someone else. Good luck and I hope the remicade works for him. DD takes humira injections once a week along with steroids, and many other drugs.

 

[Tiger926]

Thanks for the info. I hope your daughter finds a treatment plan that works well for her.

Happy health to her, Tiger

 

[daisyduck123]

Good morning Tiger, so sorry to hear about your DH's diagnosis.

DD16 was diagnosed with Ulcerative Colitis in Nov. 2008, so almost 3 years ago. She was hospitalized then for 17 days & released the night before Thanksgiving day. Like you, we also missed a WDW trip, as we had a 2BR booked for Thanksgiving week.

She was on several med for about 2 years, & we were able to keep most flare-ups in check, although we did have hospitalizations now & then. Last Sept, at the start of her senior year, her meds stopped working & she had 4 hospitalizations in Sept-Oct. She would bleed badly & end up needing transfusions every time.

At the beginning of October, it was decided that she would try Remicade. We had heard SO MANY good things about it from a co-worker of mine with colitis, our pharmacist who has Crohn's, etc. Well the first treatment did not help at all. They did another 2 weeks later. Nothing. They did a 3rd treatment. Still nothing. She ended up being hospitalized the first week of November & it was decided that she'd undergo a total colectomy (removal of the entire large intestine). She ended up being in the hospital for 9 solid weeks (yes, we were in there for Thanksgiving, Xmas, & New Years) and was released in early January. We did get her to WDW two weeks later, with her on an ECV the entire time.

She went back in the hospital this past spring (to complete some of the colectomy surgery from November), over, what else? EASTER. Poor girl! And this was her senior year, she missed everything. After that last October hospitalization, she never returned to school. She did get to graduate with her class though, is feeling MUCH BETTER, & is off to college in 3 weeks.

I guess that I just relayed all that to you to let you know that I understand what you're going thru. I'm so sorry for your husband. I hope that his Remicade treatments work. They work wonders for a coworker of mine. I'd listened to her sing its praises for years.

There is a book out, Breaking The Vicious Cycle - Intestinal Health Through Diet by Elaine Gottschall, that many Crohn's & Colitis patients have claimed helped them. I ordered it, read some it, but never tried anything mentioned in the book. DD was just too sick at the time. You may want to look into it as many people say it's changed their lives.

 

[Tiger926]

Good morning Tiger, so sorry to hear about your DH's diagnosis.

DD16 was diagnosed with Ulcerative Colitis in Nov. 2008, so almost 3 years ago. She was hospitalized then for 17 days & released the night before Thanksgiving day. Like you, we also missed a WDW trip, as we had a 2BR booked for Thanksgiving week.

She was on several med for about 2 years, & we were able to keep most flare-ups in check, although we did have hospitalizations now & then. Last Sept, at the start of her senior year, her meds stopped working & she had 4 hospitalizations in Sept-Oct. She would bleed badly & end up needing transfusions every time.

At the beginning of October, it was decided that she would try Remicade. We had heard SO MANY good things about it from a co-worker of mine with colitis, our pharmacist who has Crohn's, etc. Well the first treatment did not help at all. They did another 2 weeks later. Nothing. They did a 3rd treatment. Still nothing. She ended up being hospitalized the first week of November & it was decided that she'd undergo a total colectomy (removal of the entire large intestine). She ended up being in the hospital for 9 solid weeks (yes, we were in there for Thanksgiving, Xmas, & New Years) and was released in early January. We did get her to WDW two weeks later, with her on an ECV the entire time.

She went back in the hospital this past spring (to complete some of the colectomy surgery from November), over, what else? EASTER. Poor girl! And this was her senior year, she missed everything. After that last October hospitalization, she never returned to school. She did get to graduate with her class though, is feeling MUCH BETTER, & is off to college in 3 weeks.

I guess that I just relayed all that to you to let you know that I understand what you're going thru. I'm so sorry for your husband. I hope that his Remicade treatments work. They work wonders for a coworker of mine. I'd listened to her sing its praises for years.

There is a book out, Breaking The Vicious Cycle - Intestinal Health Through Diet by Elaine Gottschall, that many Crohn's & Colitis patients have claimed helped them. I ordered it, read some it, but never tried anything mentioned in the book. DD was just too sick at the time. You may want to look into it as many people say it's changed their lives.

Thank for sharing your thoughts. I am so sorry to hear about your DD's health - in my research I've read a lot about pediatric Crohn's, and it sounds so serious for all of the youngsters affected by it.

Hubby has had a good week this week. He is looking good and feeling good, and has more doc appointments next week to discuss the Remicade. Lots of forms and paperwork to fill out, but we are keeping on top of it. I am so grateful that I am a teacher and this happened while I'm home for the summer.

Best of health to your daughter, and thanks for the book recommendation.

Tiger

 

[Forevryoung]

DaisyDuck123, my sister is going through the SAME exact thing right now- remicade is NOT working for her ulcerative colitis. She is thinking surgery is her last option.

Would it be ok if I PM you?

 

[figmentswife]

We have had a hellish 2 weeks, as we were supposed to be in Disney for the next several weeks, but hubby was in hospital all of last week, so trip cancelled. After many tests, doc finally discovered that he has Crohn's with fistulas.

He has had what we thought was IBS (irritable bowel syndrome), for years, but now we believe it might have been this. He has not had bleeding, and just basic symptoms, but this has hit us hard as it means a big change in diet, and now doc wants him on Remicade, which is a very scary drug based on the research that I've done. We also aren't sure if we are covered, which is scary as well...

I have read some older threads on here about Crohn's, but we are still a bit overwhelmed, especially since his specialist is very concerned about the fistulas. Good news is that his large colon is great at the moment, but he has an aggressive case in his small intestine.

Anyone with any words of wisdom for us? Thanks, Tiger

My husband was diagnosed in 2010 with UC. After 4 hospital visits he FINALLY gave in to trying Remicade. No noticeable effects after first 2 treatments, but started to see difference after 3rd then after the 4th treatment.....LIFE WAS WONDERFUL. He started the Remicade on Dec 28, 2010 and he goes every 8 weeks. We also had read some scary stuff about the infusion's but thought it would be better to try it first before taking out in colon. We are very happy that we decided to try it.

It is expensive, however there is a program that your local hospital should be able to help you with that will help pay for most of the treatments. It is called Remi-start. You just send them your EOB form Ins, then they send you a CC that you use at the hospital to pay for it. We have spent a total OOP this year of $300 for his treatments and we will not be billed for any more b\c we have met the OOP max and Ins is now paying 100%.

Also check online for support groups. I found a local one, however we have never gone to a meeting, but I think it was good for my DH to know that there were other's dealing with the same issues he was.

I hope this helps you some.

 

[Tiger926]

My husband was diagnosed in 2010 with UC. After 4 hospital visits he FINALLY gave in to trying Remicade. No noticeable effects after first 2 treatments, but started to see difference after 3rd then after the 4th treatment.....LIFE WAS WONDERFUL. He started the Remicade on Dec 28, 2010 and he goes every 8 weeks. We also had read some scary stuff about the infusion's but thought it would be better to try it first before taking out in colon. We are very happy that we decided to try it.

It is expensive, however there is a program that your local hospital should be able to help you with that will help pay for most of the treatments. It is called Remi-start. You just send them your EOB form Ins, then they send you a CC that you use at the hospital to pay for it. We have spent a total OOP this year of $300 for his treatments and we will not be billed for any more b\c we have met the OOP max and Ins is now paying 100%.

Also check online for support groups. I found a local one, however we have never gone to a meeting, but I think it was good for my DH to know that there were other's dealing with the same issues he was.

I hope this helps you some.

Thank you so very much! This is very helpful. Hubby has had a great few days, and is starting to eat a bit here and there, so he is feeling energetic, and his mood is good too!

I have been praying that we will stay strong through it, and so far, so good. All of the prayers and well wishes I have received here on the DIS from various posters, has been so helpful.

I did just receive your friend request too, so thanks for that!

I wish your hubby continued good health, Tiger

 

[daisyduck123]

DaisyDuck123, my sister is going through the SAME exact thing right now- remicade is NOT working for her ulcerative colitis. She is thinking surgery is her last option.

Would it be ok if I PM you?

Of course

 

[figmentswife]

My DH has been dealing with this for over a year now, and it took what seemed like FOREVER to figure out what was really going on. We knew it was possible for him to develop UC b\c of a rare liver disease (PSC) that DH was diagnosed with 5 years ago.
If it hasn't yet, it can take it's toll on you as well (as the caregiver) Food is not his enemy, but his body thinks it is at times. When he starts to have symptoms go ahead and start him on an all liquid diet.

My DH would have 1 good day then think he could eat how he wanted....WRONG, he would them suffer for about 3 days for that 1 day of food.

a couple of important things...

Start (or have him) a journal of food and symptoms, this will help Dr and you (him) see if there is a certain food he shouldn't eat (for my DH corn is the enemy) be very detailed (food, time eating, bathroom habits....you get the point)

Get a GOOD gastro Dr who has other healthy patients and who is willing to answer your phone calls ANYTIME. (we are blessed to be close to Duke Medical center, so we feel like we have the best of the best) What I mean by this is if you are uncomfortable with the Dr....switch to a new one. We had to do this...the 1st Dr. just handed him pills and said "that should help" but didn't explain anything to us, nor did he even call to give us the results of the 2nd set of test.

Look at all of the options (med's) and even consider maybe a research study (med's would be free) There are a few different kinds of med's for this illness and they can all work differently (my DH tried 3 before the infusion's) the 6MP seemed to work the best)

Ask for help (shoulder to cry on) from your family and friends. You can not handle this alone. Praying for his healing and for both us you to grow stronger.

 

[treehugnmama]

I have a gf that has crohns and has been on remicade fore 4 years now and it has done wonders for her good luck

 

[book_junkie]

Heya-
For those who are on or know people on Remicade, how many treatments was it before you/ they saw results? My hubby was diagnosed with Crone's this spring and has been extremely shaken up by everything- before this was relatively healthy, and they thought he was just going in to remove some polyps... Instead comes out with a Crone's diagnosis that was backed up with all the tests, and was put on pills and Remicade. He's had three treatments, and isn't really seeing a drastic improvement, and refused (so far) to go to the local support groups to talk to others...

Right now I'm at a loss as to what to do, how to help, aside from general moral support...

 

[figmentswife]

Heya-
For those who are on or know people on Remicade, how many treatments was it before you/ they saw results? My hubby was diagnosed with Crone's this spring and has been extremely shaken up by everything- before this was relatively healthy, and they thought he was just going in to remove some polyps... Instead comes out with a Crone's diagnosis that was backed up with all the tests, and was put on pills and Remicade. He's had three treatments, and isn't really seeing a drastic improvement, and refused (so far) to go to the local support groups to talk to others...

Right now I'm at a loss as to what to do, how to help, aside from general moral support...

It was about the 4th treatment that was "life changing"

First 3 treatments didn't see much difference/symptoms, but the 3rd one we started to see changes, then after the 4th treatment.....LIFE CHANGING. My husband is now healthy and happy.

 

[karliebug]

My DD21 is on mecaptopurine, prednisone, lialda, and takes shots of humira weekly. Remicade didn't work for her and she actually ended up in the hospital with pneumonia because of it. She cannot get off the prednisone without relapsing. She needs to watch what she eats and now has high blood pressure and needs medication for that. I'm not sure if that is related to her long-time use of the other meds. Both the medication and the disease make her easily fatigued and heat sensitive. I hope your hubby finds a treatment plan that works for him.

 

[Tiger926]

Thanks all. Hubby had had a pretty good week, but I did catch him sneaking a few foods, so we had to have a discussion about that.

We were officially authorized for full coverage of Remicade treatments, so we are now waiting for the clinical nurse director to contact us in terms of starting treatment, schedule, etc.

His Prednisone was reduced a bit this week, which I am grateful for, as that is a difficiult drug. He is still on his other meds, for at least 1.5 more weeks, so Remicade should start soon. Specialist is very happy with him so far, and he starts back to work on Tuesday.

Best of health to you all of you who suffer from Crohn's or have family members who do.

Tiger