New and frustrated

[*Cari*]

My husband was diagnosed two weeks ago with crohns via colonoscopy and biopsies. We are devastated. He has been in horrible pain and this plain sucks. He has only worked three days in three weeks and I'm not sure what's going to happen. He has lost 42 pounds and won't eat because that causes pain.

He is on lialda, 60 mg steroid, finished up cipro and flagyl(unless they continue those) and has an enema every night. He is starting to get down by reading all the bad stuff about this disease.

I'm not sure what I need to do as his support person to help him. The more I read the more worried I become too. How long do these flare ups last? Does this ever get better?

 

[Dunbar]

Welcome Cari
It is painful for both of you right now. Recognize that a huge change has occured in your lives and know that you are not alone in this. As you have discovered there are many stories here, not all are scary. Go to the Success Stories link, it can get better.
I tried more than a few treatments in the year before I was successful with Humira and diet adaptations. My flares have been a couple of days to many months it all depends and everyone is different. The steriods should do the trick in the short term, remember to take calcium while on steriods to help offset depletion caused by them. There are up days and down days like with everything else, but there ARE up days. Hope he gets some relief and healing soon.

 

[David]

Hi Cari and welcome! I'm sorry to hear of your husband's diagnosis and troubles, but it can and WILL get better. It's understandable that you're overwhelmed and devastated but it WILL get better.

While it makes sense that the more you read the more you get worried, educating yourself is so very important. Become an expert in this disease so you can advocate for your husband and ensure he is getting the best possible care. There is SO MUCH to learn but we're here to help you in that journey.

All my best to you and your husband.

 

[Manatey]

Hi Cari!
I am sorry you are having to watch your Hubby go through this! It is tough but it will get better. One thing I can say is make sure to take care of yourself. Right now I am having a rough time with a flare and watching my hubby take on all of the responsibilities and seeing what it is doing to him to him puts me in more pain then all of stomach pain, joint pain and everything else that goes along with it. So Please just make sure you are taking care of yourself while you are trying to help him get through this rough time!

 

[*Cari*]

Thank you all!! I talk to the drs office about every other day updating them on his status. He seemed to have a few good days and now PAIN. We have 7 children ages 13-3 and this is very hard on me to try and keep up with the kids, house, bills, shopping, and taking care and helping him. I just want him better. It's really hard to watch him be in so much pain.

New question. Does lialda take a while to start working? I don't see many people on it and I'm not sure he is on enough or the right med or something. He is also doing an enema every evening. The dr said his colon is very infected (full of eosinophils) and he has finished both antibiotics so it's a wait and see game to see if it's cleared or he gets worse. Is this disease a trial and error on medications to see what works. I really hate that he is on a steroid too.

 

[sawdust]

I don't see many people on it and I'm not sure he is on enough or the right med or something.

Lialda is a form of mesalamine, which many people here are on in one form or another. If you click the hyperlinked wiki link on mesalamine in my post here, it will show you more info.

The difference, as far as I understand, is the delivery method. Lialda was chosen by his doctor because of where his disease is in his digestive tract. I believe it comes in either time-release capsules or suppositories? For example, I'm on Pentasa, which is supposed to break open and release the capsule contents at the end of my small intestine. Lialda, I believe, is for primarily the colon.

And, in my opinion, prednisone is the drug we love to hate with IBD. I don't care for prednisone or its side effects, but I have found that sometimes its a necessary evil for me. Unfortunately, the pain can really make you wish for some of the nasty side effects of prednisone. BUT, the good part is that it's not a long-term drug and its used because it's usually pretty good at getting things under control. I hope it gives your husband relief, and fast! Welcome to the forum. :hug:

Please encourage your husband regarding "reading all the bad stuff about this disease." The forum here has been a good resource for me from a patient's perspective. I won't lie, there are difficulties having IBD, but it's not as bad as you're probably worrying. Ask questions! Chances are, someone here can give you good perspective. :hug:

 

[Manatey]

You sound like you have your hands full. Taking care of 7 kids and a sick hubby must be tough on you! I have just joined here myself but so far I have found it very helpful. There is much information on medications, treatment and symptoms. Just the support alone has proven helpful for me in the last couple of days. Good luck!

 

[carrollco]

Lialda after colonoscopy:

I was diagnosed a year ago last November. The first drug they tried me on was Lialda. I stuck with it for three months. Three months of hell. The doc never mentioned that there is aspirin in Lialda. While I am not allergic to aspirin, I am sensitive to it. When I began to bleed more, and wasn't getting better, we figured out what was causing the intensification of symptoms.

The first year was one experimentation after another. The next drug did a number on my liver and kidneys. Finally, I am on Humira and I am living and working and playing again. There are days I completely forget I have Crohns.

I will say though, that stress is a no no for me. When I have a mini-flare you can be sure that it is stress induced. Well, either that or I ate a chocolate chip cookie. They are my weakness. *sigh*

The best thing you can do is educate yourself and pass that information to your husband. Hang in there. It WILL get better with time. Give yourself permission to relax and take breathers. This can be a rough disease so you must take care of yourself.

 

[Angrybird]

Hi Cari. Wow, you certainly have a lot on your plate and things must be hard for you both right now. As others have already said things can get better and whilst having crohns it not great it is not that end of things either. There can certainly be a trial and error phase whilst the docs try to sort a working treatment plan but once there things can really improve. The pred is great for targeting inflammation and bringing it down and it is for short term use ideally so fingers your hubby shouldn't have to be on it too long.

One thing I would ask if you have looked much into diet? Whilst at this tricky time of sorting meds I think it is very benificial to really cut down and at least stick to a low fat/low fibre diet and perhaps mushy foods, depending on how hubby feels about it perhaps even look into enteral nutrition for a while, many here have had a good response to this and I think it can help to calm the tummy down.

There is a lot to take in but we are here for any advice and supprt you need.

Wishing hubby well soon.

xxx