My Husband's Story

[newlymarriedtocrohns]

Hello everyone! Thank you so much for creating this forum and sharing so much useful info!

My husband was diagnosed with Crohn's disease back in 2006 a year or so before we met. He had developed a fistula that required surgery, but for much of the time while we were dating he was in remission. He told me about his disease, but I had thought it was comparable to celiacs or some other food allergy and failed to understand the severity of his condition.

Now he's been in a flare-up for two-years, so I've been researching all I can to try to help support him. He's tried remicade, humira, and doses of prednisone. Now he's on 200 mg cimzia every other week and on asacol. The medication hasn't given him much relief from his symptoms or put him into remission.

We've also stuck to a low-fiber, low-residue diet for the last year. He's tried to find trigger foods, but that seems impossible without going into a full remission first. The low-fiber diet helps reduce pain. We're considering starting a gluten-free diet or else a full liquid diet.

We're hoping for a break into remission, but are not sure what more to try. We'd appreciate any advice or guidance anyone has to share. Thanks!

 

[shalin]

Sorry he is have problems like this. What are some of his symptoms? You said the low residue diet is helping with the pain, but what else is going on?
I found out I had crohn's just after we got married. Over the years my husband has learned my triggers and my signs of problems well. Sometimes he will tell me I should be careful due to something changing in my attitude or apperance. I will notice these changes sometimes on my own. But stress is my biggest trigger.

 

[Angrybird]

Hello and welcome to the forum.

I was also wondering what other symptoms he continues to get? How often is he seeing his doc and when was the last time any tests were done to check what was going on inside? If cutting out certain foods do help it may be worth checking into something like enteral nutrition - this has been shown to really help with the calming the tum down.

AB
xx

 

[newlymarriedtocrohns]

Hello and thanks for the warm welcome!
His last colonoscopy about a year ago showed inflammation along the entire large intestine, which was a dramatic increase from the previous check several years earlier when it was mostly focused around the ileum. His symptoms include weight loss, blood in the stool, diarrhea, high frequency, pain, and energy loss. He's been anemic on an off too, but vitamin supplements seem to help with that.

Remicade plus prednisone actually did give good results and reduced the blood in his stool for a while. But then his body developed an immunity to the Remicade which made the treatment completely useless.

AB, have you tried the enteral diet? Hubby is interested in it, but concerned about using a tube. Being a guy who hates needles and tubes, it's hard enough for him to stab himself for the meds. I think he'd be much more open to the idea if there were a way to take enterals without resorting to tubes. Is that possible or does the stuff really taste that badly?

Shalin, I think stress is definitely a factor. His flare started during a time with a lot of major life changes: getting engaged, planning wedding, finding new job, finding home. The high-stress environment of his job and the odd hours could be a factor so he has been searching for another job. Do you meditate or do anything preventive to control the stress? That's so great that your husband has been by your side and knows your symptoms. What physical symptoms should I be looking for? Thanks again!

 

[Angrybird]

I have not been on this myself but an alternative would be to get a referral to a dietician to get on some shakes. I have been on a few of them and found Modulen to be the best - I used to drink it cold from the fridge with banana and strawberry flavourings. When are you seeing his doc next?

 

[newlymarriedtocrohns]

He just had another appointment today and the doctor also admitted frustration in his case. He's consulted other opinions, but he's suggesting my husband check into clinical trials. The doctor is also switching him back to Humira and Methyltrexate. We'll look into liquid diets and Modulen. Thanks!

 

[Angrybird]

Will be keeping fingers crossed these can sort the tum for him, pls keep us updated on how he is doing.

 

[David]

Hi there and welcome to the community! I'm sorry your husband is doing so bad but kudos to you for reaching out and trying to find some answers. I concur with the above regarding enteral nutrition but have two other things:

1. Throughout this flare, do I assume correctly that they tested to make sure he doesn't have an infection such as c.diff which Crohnies unfortunately get far too often?

2. I'd suggest looking into Low Dose Naltrexone. It's a pretty exciting treatment option in my opinion and one I'd try before the clinical trials.

All my best to you and your husband.

 

[newlymarriedtocrohns]

Hello David! He was tested for c.diff a long time ago. How often should he be tested? He works in a hospital so I wonder if he would be at a higher risk.

Thanks for the tip about the Low Dose Naltrexone! His doctor hasn't mentioned that, so that could be a new option too. Thank you!

 

[David]

If he works in a hospital, he is definitely at a higher risk. I don't know specifically how often he should be tested, but if it has been a year or more, considering his disease isn't responding well to traditional meds, I would request it. Far too often c.diff mimics Crohn's flares.

Be sure to read up on the LDN before mentioning it to your doctor. Many doctors don't know about it and some aren't in favor of it. But there are studied (we've linked to them) showcasing its efficacy AND plenty of people here have had good results.

I'd ask about the c.diff first though.

 

[newlymarriedtocrohns]

Hubby was wondering if blood in stool could also be caused by c.diff? He had heard it could mimic other symptoms, like diarrhea, but since he has occasional bloody stool, he assumed it couldn't be an infection. Thanks David!

 

[Gutsii]

Hello everyone! Thank you so much for creating this forum and sharing so much useful info!

My husband was diagnosed with Crohn's disease back in 2006 a year or so before we met. He had developed a fistula that required surgery, but for much of the time while we were dating he was in remission. He told me about his disease, but I had thought it was comparable to celiacs or some other food allergy and failed to understand the severity of his condition.

Now he's been in a flare-up for two-years, so I've been researching all I can to try to help support him. He's tried remicade, humira, and doses of prednisone. Now he's on 200 mg cimzia every other week and on asacol. The medication hasn't given him much relief from his symptoms or put him into remission.

We've also stuck to a low-fiber, low-residue diet for the last year. He's tried to find trigger foods, but that seems impossible without going into a full remission first. The low-fiber diet helps reduce pain. We're considering starting a gluten-free diet or else a full liquid diet.

We're hoping for a break into remission, but are not sure what more to try. We'd appreciate any advice or guidance anyone has to share. Thanks!

Hi Newly,

I am sorry to hear about your husbands troubles, but I am very glad that he has you by his side to help out

From the information you have presented, it really seems that a lot of the problems were created during hard psychological times (moving, job transfers etc.)

Based of that information, have you and your husband discussed any emotional/psychological therapy? (i.e. yoga, energy healing, meditation etc)

The thing is that physiology is only one part of the medical field (which is what MD's only look at -> well, most of them)

PM me if you want any insight or suggestions on this area --> (I actually had a friend who "flared" really badly when he was misdiagnosed with only 2 months to live. He was a disaster, but is now completely of meds)


Also, could you expand on what your husbands diet consists of in more detail, if it isn't too much trouble?

I am very curious and have studied(and experimented) on this topic for quite some time and I might be able to shed some light on things!


All the best,


Boris

 

[David]

Hubby was wondering if blood in stool could also be caused by c.diff? He had heard it could mimic other symptoms, like diarrhea, but since he has occasional bloody stool, he assumed it couldn't be an infection. Thanks David!

Yes it can.

 

[newlymarriedtocrohns]

Hi Borris! Thank you for the suggestions!
Some friends and I have suggested yoga, meditation, or acupuncture to my husband too. He's a little skeptical about holistic medicine because it's hard to prove that it will actually help. Would you know of any studies or topic boards on here that I could go to for more evidence that this could be helpful? I'd love to hear anything you have learned, since I don't know a whole lot about energy healing.

Sure, I can share the low fiber diet plan! I kind of made it up myself from online research, so I'd appreciate suggestions. How about I start a new board in the diet category for that?

 

[Gutsii]

Hi Borris! Thank you for the suggestions!
Some friends and I have suggested yoga, meditation, or acupuncture to my husband too. He's a little skeptical about holistic medicine because it's hard to prove that it will actually help. Would you know of any studies or topic boards on here that I could go to for more evidence that this could be helpful? I'd love to hear anything you have learned, since I don't know a whole lot about energy healing.

Sure, I can share the low fiber diet plan! I kind of made it up myself from online research, so I'd appreciate suggestions. How about I start a new board in the diet category for that?

Np at all

The way I look at every situation is the same. If I try something and it helps me then I stick to it. Also, if I try something that is "proven" and it doesn't work for me, I ditch it quickly.

What's most important to me is getting results, be it via holistic medicine or western. I don't believe in pills as a long-term strategy however, which is why I wouldn't take them for extended periods of time. I weigh out the situation and make a decision accordingly. If I am wrong I change my approach.

This is why to me it doesn't matter whether someone has a PhD next to their name or not. I like to do my own due diligence and then make decisions on my health within collaboration of all that research/testing and insight.

If your husband is very ill, then perhaps you could make him see his situation from a different viewpoint (basically that if the current approach isn't working, then maybe he can benefit from a new one) -> the upside is huge and there is no downside.


I am currently on the run, but I will be back on to help out with some resources later on

New board sounds good to me Just let me know about it as soon as it goes up!

 

[newlymarriedtocrohns]

Ok, his test for cdiff came back negative, so the good news that it's not an infection. Guess it's on to the next option. He's looking into other treatments and clinical trials at John Hopkins Hospital now.

 

[Gutsii]

Good stuff!

What kind of treatments is he looking into (also I am interested in the trials )

P.s. still waiting on that diet info

 

[David]

I was kinda hoping it would be c.diff since it's so treatable Regardless, please keep us updated as to how he's doing and what's decided next.

 

[newlymarriedtocrohns]

David, I know it's weird to hope for an infection, but I was thinking the same thing that at least c.diff could be a quicker fix.

Boris, sorry for the delay on the diet info! Things got busy around here with the holidays. I promise I'll let you know when I finally get around to posting the diet.

I'll definitely share what happens next with clinical trials! We'll be exploring a lot of new territory, so I'll probably be on here a lot for info and fact checking.