New Here - Husband has Crohn's

[ErinK]

Hi All-
I'm new to the forum and am looking for help and support.
My husband was diagnosed with Crohn's in 2000. His father also has Crohn's.
He went through high doses of prednisone early on which helped him get to a semi-remission state when I met him in 2004.
Since then he has gone in and out of flares being treated with high doses of prednisone. We were married in 2007 and our daughter was born 3/2010. Since the birth of our daughter he has been in a constant flare state with the symptoms reaching an unbearable place when he was laid off 5 weeks ago. (Stress sucks!) The local internist has given him pretty much everything besides prednisone to try to help. Things will work for a short while and then he relapses even worse.
Currently, he is on sulfasalazine, azathioprine, and humira.
The internist said since the humira isn't working, he'd go ahead and try predisone after his last dose of humira. My husband called him after his last dose last week and the guy decided to go on vacation. Now, my husband is dealing with the on-call doctor who refuses to prescribe prednisone and prescribed budesinide instead. Today, we tried to call back and the entire office is out. I understand its the holidays but we are desperate.
NOW, in the middle of everything, he has a tooth infection. MY WORD! His dentist, of course, couldn't get in contact with the internist who is on vacation and so he prescribed Azithromycin which is causing extreme cramps and nausea. I have no clue where to go or what to do.
For the future we have an appointment in San Francisco on Feb. 3 to talk surgery with a specialist. I don't know what to do until then and would love any advice and welcome any support.
In the beginning of November he was 6'4" and 255 lbs. He is now 218 lbs. He has bouts of nausea (tend to come while going to the bathroom with extreme cramps). He can get very light headed and blacks out easily. He is also having problems regulating his body temperature. I am assuming that's from dehydration but he isn't able to drink a large amount of water without getting nauseous. I have no clue what to feed him. I am overwhelmed with everything I read.
Thanks so much, Erin

 

[xJillx]

Hi Erin and welcome! I am so sorry to hear your husband has been struggling so much with his Crohn's. Unfortunately, many doctors are apprehensive to give out pred due to its nasty side effects. Though it could help him now, taking pred so much could really hurt him in the long run. Being that nothing else seems to help, surgery may be the best option.

Where is his Crohn's located? Many forum members have had resections and have done great afterwards. Some have experienced YEARS of remission. I hope this will be the case for your husband.

Hang in there!

 

[Jessi]

Oh, Erin. I am so sorry about having to watch your husband going through this, and feeling so helpless. You definitely came to the right place, though. It's true that we're not doctors, but it's also true that we know what this nasty disease is like. And nobody knows IBD like we do.

I have my nausea bouts while on the toilet, too. I often black out and wake up on the floor with my pants down. It's the scariest thing. Just be there for him. Help him get cleaned up, and let him know you love him. My husband gave me so much strength and hope just by being there for me.

Everyone is different, and every flare is different from the last, but hopefully the right treatment will be discovered for him... and soon! I was on my death bed in May this year, but since then, have been diagnosed and treated, and now am in complete remission. There is hope for him, Erin. :hug:

I am afraid I don't know anything about dental meds and which ones to avoid. I haven't had to go through that just yet. But there are plenty of people here who can advise you on that.

Welcome to the forum, and I hope you're able to find answers here. I'm crossing my fingers for you both. :hug:

 

[David]

Hi Erin and welcome. I'm so sorry you and your husband are having to go through all of this

I'm glad you're heading down to San Francisco for further evaluation. I'd get on the phone to them today and see if you can get it moved up. Describe what's going on in detail. Do you know if they plan additional testing at that time to evaluate the extent of the disease?

You mentioned he's having a hard time regulating his body temperature. Can you elaborate on that? As in his basal body temperature or his hands and feet get cold or something else?

The "extreme cramps and nausea" is a little concerning to me. You're sure it's due to the antibiotic?

Do you have good health insurance?

All my best to you, I know this sucks

 

[ErinK]

According to the colonoscopy in Nov. it was only in his colon, which the doctor seems to think is positive for surgery options.
We spent yesterday in the E.R. because he passed out in the shower. They gave him fluids, magnesium and calcium and sent us on our way 7 hours later.
I am assuming UCSF will be doing additional testing but I believe our appointment is just for a preliminary consultation.
His entire body gets cold and he can't get warm and will be shivering when our house is 75 and he has a sweatshirt and two or three blankets on. Then, all of a sudden he will be sweating. He thinks it might be linked to the humira, which he is off now but he still had this happen last night after getting home from the ER.
No, I'm not sure that the extreme cramps/vomiting is related to the antibiotic but it did seem to get MUCH worse when he was on it. His doctor wasn't incredibly concerned when he brought it up at the last visit and is still on vacation until tomorrow afternoon. He mentioned possibly doing a ct scan if the vomiting continues.
I am hoping our insurance is good. I just started working for a community college and am paying for it out-of-pocket because I'm part-time. So far it looks like a $250 deductible and they pay 90%.
I'm trying to find out if Coconut water is good and am getting mixed results when I google search. His mom seems to think it will hydrate him but I don't want to make anything worse.
Does anyone have any food recommendations? What do you eat when you are feeling your worst? I know everyone is different but I just don't know where to start. Gluten free? Supplements? Will they even be absorbed when he is this inflamed? I'm overwhelmed.
Thank you for the responses. I'm sorry I ramble. Its just so much contradictory information. I appreciate any advice and knowing that there are other people out there dealing with the same stuff.

 

[Cross-stitch gal]

I Just want to say welcome! Unfortunately, I don't have any advice. But, I also have Crohn's. One thing I can say though for all of us is that those of us with husbands/wives are very thankful for their support! We may not say it enough, but sometimes we wouldn't know what to do without you. I do hope you can get help for him soon. Take care.

 

[David]

Ugh. I was going to suggest you head to the ER based upon what you stated but was worried about the insurance side of things. I feel really guilty now. I'm so sorry.

Alright, no more holding back...

Based upon what you've described, I don't think for a second that his Crohn's Disease is only in his colon. If he hasn't had one lately, get that CT scan done, the sooner, the better. What you describe COULD be the Humira or related to the Humira, but I don't think so.

Did they do any blood tests like a CBC in the hospital? If so, what were the results?

Coconut water should be fine (for the record, coconut is one of MY triggers but I haven't heard anyone else say the same) and it is indeed good for hydration.

As for diet, based upon what you're describing, if it was me, I'd head to Wal Mart and get him some Ensure of Boost. Read this to understand why.

I hope this helps some! We're here for you!

 

[ErinK]

..
Based upon what you've described, I don't think for a second that his Crohn's Disease is only in his colon. If he hasn't had one lately, get that CT scan done, the sooner, the better. What you describe COULD be the Humira or related to the Humira, but I don't think so.

Elaborate! What are you thinking it might be? Don't hold back, I can take it!! I need to be fully prepared when I talk to his G.I. tomorrow.

..
Did they do any blood tests like a CBC in the hospital? If so, what were the results?

They did blood tests. I'm not sure what CBC means but they said everything was hovering right on the borderline normal levels. They said he COULD need a blood transfusion if anything gets worse but not right now.

..
I'd head to Wal Mart and get him some Ensure of Boost.

First of all, no walmart. Sad, but true. We are supposed to get one come summertime but we have protestors. He's been on Ensure but it is hard for him to take. I'm not sure if it was the flavor or what but he hated it. His brother delivers for a beverage company and picked up some "oh yeah" protein drinks (http://www.ohyeahnutrition.com/products/nutritional-shakes/) My brother-in-law thought it might help because he delivers them to chemo therapy patients. My husband has been able to drink those a bit more frequently.

..
I hope this helps some! We're here for you!

I appreciate the fast responses. I'm desperate but trying not to overreact. He's remaining strangely calm but none of this is okay with me.

 

[Cat-a-Tonic]

Hi Erin, welcome to the forum. As David said, coconut can help or it can be a trigger. For me also it's a trigger and only makes things worse. I tried taking coconut oil supplements but they caused terrible stomach pain so I discontinued them. If you feel he may be dehydrated, you could try Pedialyte or Gatorade. I believe Pedialyte has more electrolytes (not 100% sure of that) but both will have lots of sugar so avoid those if sugar seems to be a trigger for him. In a bad flare drinking fluids doesn't seem to always keep me hydrated and I've had to go get IV fluids numerous times, and it looks like you've just done that with your husband - keep an eye on him and don't hesitate to take him in to the ER again if need be.

Does he have a fever when he's having the chills? If so, that could indiate something like an infection. The chills could just be par for the course with his flares too - I get the chills when I flare too but my temp is always normal or a little below normal, I have never had a fever in a flare. Once I'm out of the flare the chills go away too.

As for what to eat in a flare, it's a bit hard to say - all of us are different and we all have different trigger foods. Some can handle gluten and some can't, some can handle dairy and some can't, etc. Generally speaking, bland white food is usually pretty safe. Stuff like white rice, white bread, baked chicken, baked fish, potatoes without the skins, plain pasta, bananas and applesauce would be worth trying. As he starts feeling better, add more foods in and see how he does. If he's not sure what his trigger foods are, it would be a good idea to keep a food & symptom diary to see what affects him. There's an entry in the "wiki" section of the forum with more info on that.

Good luck! As Cross-stitch gal said above, we love to see supportive spouses on here! I hope your husband feels better soon.

Edited to add: I just saw the part about him being on Azithromyocin. I was on that recently myself. I was only on it for something like 5 days, but it caused a lot of cramping and more diarrhea than usual, and that was with me taking probiotics along with it. Antibiotics can decimate bacterial flora (including the "good bacteria") which can cause cramps and other symptoms even after he's been off of the antibiotics for awhile. If he's not already taking probiotics, it wouldn't be a bad idea to start. Probiotics affect my GERD (chronic acid reflux) negatively but I wouldn't do without them when I'm on antibiotics.

 

[glory_h]

I would also recommend Ensure if he can at all get it down...The flavor is disgusting but it will really help. It was the only thing I could handle when my Crohn's was really bad. Just have him plug his nose while he drinks it It should be available other places besides Wal-Mart - or you can order it online. It will help him get the nutrition he needs while waiting to see the doctor.

When my Crohn's was at its worse, it sounded a lot like his is now. I tried a lot of medications but the only thing that really worked was prednisone. Unfortunately when I tried to go off it, my symptoms came back. Also, I'd had so much inflammation that the intestinal wall scarred up. Surgery was the only option. It sounds like your husband is in the same boat. To give you some reassurance, surgery was the best thing ever. It totally changed my life. I remained in remission for 10 years after the surgery. I know it's not the same for everyone, but it was truly a life-saver for me. It wasn't too scary, either, even though I was only a teenager at the time.

I'd also recommend seeing if you can get a sooner appointment - if he's lost almost 40 pounds between November and now, he could lose a bit weight more before February 3rd.

 

[David]

Elaborate! What are you thinking it might be? Don't hold back, I can take it!! I need to be fully prepared when I talk to his G.I. tomorrow.

If they do further diagnostic testing I think they'll find significant inflammation in his small intestine that is causing narrowing (strictures). Just my guess of course, I'm no doctor.

Please keep us updated.

 

[ErinK]

Well we got in this afternoon to see his G.I. He called SF and they moved his appointment to Jan. 10. They also ordered more blood tests and a CT scan tomorrow.
He hesitated but gave him prednisone, 40MG and a drug that is supposed to help with the cramping to hopefully prevent the vomiting. I don't know the name of it but can find out later tonight when its ready for pick up.
He's testing him for some kind of virus because he wants to put him on Tysabri (I think that's what it is) as a last resort before surgery. It's funny because surgery is such a scary thing but he's amped himself up for it and was looking forward to relief and then they say, "Oh, we're going to throw more drugs at you." Not to say that this won't work, we're just jaded.
Cat-a-Tonic - No fever with the chills. No signs of infection. Doc seems to think its "a sign of the war in your gut"
David (funny, that's my husband's name) - After doing some research, I was thinking the same thing. Some kind of narrowing makes a lot of sense to me with his symptoms.

 

[David]

I'm glad you got the SF appointment moved up and have a CT scan tomorrow. Ask for a copy of the CT on DVD when you're in with the tech. Start collecting these types of things. For that matter, start getting copies of ALL lab results. You need to learn what everything is and start tracking his results so you can become an ever-better advocate.

Tysabri huh? Interesting choice. We have a Tysabri support group you may want to check out though not too many are on it.

 

[ErinK]

The doctor has never mentioned this drug ever before but he is a huge drug and surgery pusher. The cramping drug is called hyoscyamine (?).
I need to become a better advocate. I went through years of him being drug free and happy to months of semi-ok and on drugs to the past few months of hell. I'm learning that the doctors can dictate how you live your life when it is really your choice, so long as you are an educated individual. Thank you for the advice.

 

[Jessi]

Erin, I'm not sure if David's going through the same things that I am, but his syncope worries me. It was determined that my passing out is due to having a panic disorder. I was prescribed a daily anxiety medicine in low dose which really helps. And for the big events, like an MRI or an infusion, I take a Xanax to calm my nerves. It has so far done nothing but good for me. I haven't had any periods of blacking out or even "browning out," as I like to put it. Browning out is what I call the feeling that I may pass out. My doctor chuckled when I told him that, and asked me if he could use that term.

Anyway, just thought I'd throw in another idea as to what his syncope may be related to. Most of us do suffer from anxiety and/or depression off and on. Good luck. :hug:

 

[ErinK]

I'm baaaack. No new news to report. He is finally responding to the high dose of prednisone and can eat solid food again! Its amazing! One little drug can change your whole life in such a short time.
Can anyone tell me what to expect at our UCSF meeting with the specialist. I *think* it should just be a consultation. I want to ask a million questions but not come off as a crazy lady (I probably do already on here... I just have a lot of concerns).
Typically do other medical centers want to do their own tests and scopes? I have heard varying answers when I ask this. We live 6 hours away and I don't want to make multiple trips in the same month (with toddler in tow) if we don't have to.
We are starting up a food journal this week.

 

[Cross-stitch gal]

Good to hear! My doctors are used to me asking them questions in the office and through email. Don't worry about asking too many questions, this is how you learn about more of how to take care of yourself or your loved ones. Take care.

 

[seaofdreams]

Hello and welcome, Erin. I'm so sorry to hear that you and your husband are going through harder times but I'm glad he's responding so well after finally getting that pred. He sounds like a very lucky man to have you for support and comfort

You don't sound crazy at all! You sound perfectly reasonable given everything you're going through. We're all living it and we can all seem a bit crazy sometimes but it's a method of coping. Feel free to rant and rave whenever you need on here or ask the million questions that are running through your mind. I can't even imagine how helpless it must feel to have a loved one having such a difficult time but we're all here and happy to listen and offer words of advice and support.