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Posted 4/17/2015 10:03 PM (GMT 0)
Hi everyone!
I am new to this forum and to Crohn's in general. My husband was finally diagnosed after uncountable tests, procedures and doctors' visits starting in November last year and 6 years of dealing with constant pain and digestive issues. The doctors he has been seeing have been less than helpful, kept ordering more procedures even after the first colonoscopy already came back with "Positive for Crohn's". We are on a high deductible plan with Humana which doesn't cover anything until we meet $6500 per year. It has been a LONG and very frustrating journey and we're still not anywhere close to finding help.
So, I need your advice and support as I am pretty much at a point where I don't know what to do anymore.
Here are my husband's (and therefore my) issues:
1) He is in extreme pain after every meal and whatever he eats will be expelled in liquid form 30 minutes after eating
2) After every test/procedure his condition worsens causing him to have given up in seeking any more treatment
3) He was prescribed Apriso Mesalamine, which seemed to work but costs $500 every month. Our insurance suggested trying Sulfasalazine which he is supposed to take 4 (!) times a day and causes severe headaches, nausea, vomiting and diarrhea (what's the point in taking it?)
4) His doctor and nurses have no suggestion for managing his pain

There isn't anything I wouldn't do for him and I desperately wish I could make him feel better so any suggestions from you guys are greatly appreciated. I'm sure you all know how debilitating this disease is and it is taking a serious toll on our marriage. Because he is always in so much pain and is even afraid to leave the house for fear of not finding a bathroom in time, we are not able to go out to dinner, see a movie, or visit friends or family and our love life and intimacy has suffered greatly. I am currently pregnant, expecting our first baby in June, and really wish my husband was more able to be there for me. He tries and does a great job but I know how much it takes out of him - I really just want him to be happy and healthy and enjoy life with me and our baby.

I appreciate your patience in reading this and again, any words of wisdom are welcome! Please help!
Posted 4/17/2015 10:53 PM (GMT 0)
Where are you located? In the US? If so, what state?

In addition to the colonoscopy, he should probably have an MRE (MR enterography), which is a MRI of the small bowel. That will tell if he has any activity in the small intestine and also whether he has any strictures or fistula.

The prescription he was given for Apriso Mesalamine tells me that the doctor currently treating him is completely in over his head. Apriso is useful in Ulcerative Colitis but not in Crohn's disease - and certainly not for somebody like your husband who is experiencing such strong symptoms. Doctors who don't know better prescribe Apriso or other mesalamine medications because they *hope* it will help, but it's a total waste of money for you and your husband. Studies over the last several years have shown that class of medications is completely useless in treating moderate to severe Crohn's. Your husband needs to be on stronger medications - and they might make a huge difference in his symptoms and quality of life.

I suggest you don't fill the Rx, and that you find a doctor more knowledgeable in treating Crohn's disease. You can sometimes find doctors in your area on the ccfa.org website.
Posted 4/17/2015 11:21 PM (GMT 0)
Yes where are you located...... One thing that stood out to me in your post was the serious toll on your marriage. I totally hear ya, cause Im on the opposite end. I'm like your husband. If he is feeling anything like me, he is also hurting by not being "normal". Not being able to go out, have dinner, go to friends house or even love life. I hurt everyday not being able to do the things that I love to do. I would love nothing more to go to dinner with my family, and not be so consumed with where the nearest bathroom is, or the pain after a meal. My brother is getting married in a month, and Im in the wedding party and all Im worried about is where the nearest bathroom is going to be and how long this is going to take. So I can be at the comforts of my house. Suffer in silence. Sad I probably wont enjoy my brothers wedding. Imagine how he feels. Not only is he hurting from a disease but he is also hurting from not being able to do the things he normally does. Sorry for the rant, and I mean no disrespect but I cant even remember anything else in your post.
Posted 4/17/2015 11:34 PM (GMT 0)
Hi and welcome Hexe,

I am so sorry your husband and you are going through this during what should be a hopeful time in your lives. I understand what you mean about costs/deductibles as that's the way it is for me. I can't afford the biologics and I did take the mesalamines back when I had drug coverage (don't think it did much), but I know if I took now what I did at one point, it would cost me around $1500.00 a month and that's with no biologics.

I did go on sulfasalazine this past year mainly for the arthritis I have due to CD, which is quite affordable. There is a technique to starting on it and a fellow Crohnie here told me how to start out which was a big help. It may not make a difference with your husband, but you have to start out on a low dose and work your way up on it. I take 1500 mg a day now, but I started out taking one 500mg pill a day, divided in half i.e. 250mg morning, 250mg night. When I was tolerating that, I went up by a half pill a day for maybe a week and continued doing that until I got to where I needed to be. I had the same side effects as your husband when I tried taking the prescribed dose without doing that. So if he hasn't tried that, I would suggest restarting it that way.

There are more affordable meds though I know GIs want to go for biologics, but when it's unaffordable, it's unaffordable. Flagyl, prednisone, cortisone enemas, 6mp, methotrexate are some I can think of.

It irritates me that some GIs don't seem to care that a patient is in severe pain and would benefit with pain management, but that's not unusual in my experience. I see my primary care doctor for pain management, but even he is feeling the pressure about prescribing narcotics, thanks to illicit use/abuse and the government making it harder for patients in need.

Has your husband tried an elemental diet while he's flaring? It can be helpful in letting the gut rest. There are certain diets some find helpful, but for me, I've learned what I can and can't eat so I don't follow a diet per se.

I hope things get better for you both. -Joy
Posted 4/17/2015 11:57 PM (GMT 0)
There are patient assistance programs from the drug companies for many of the Crohn's drugs including the biologics. I don't know if you are eligible to buy into a better health care plan, but if so, you should do so because this is a chronic incurable disease. You might want to talk with an insurance specialist. I agree with beave that you need a better GI doc than the one you have. Good luck with everything.
Posted 4/18/2015 6:28 AM (GMT 0)
Oh thank you so very much for the responses!
To answer your questions: We live in Arizona and he had a colonoscopy, endoscopy, serveral blood test including a Prometheus test, a follow through and now finally, after we switched to a different GI, an MRE done. The previous GI just wanted to keep running tests to make money as I assume, he had him diagnosed with CD last year after the colonoscopy but neglected to tell us and did not prescribe any medications or treatments except for more tests. I can't tell you how disgusted I am with that office.
The new GI determined that most of the inflammation is in my husband's small intestines but did not say anything about strictures or fistulae. Reading your comments leads me to agree with you and believe that he really is not familiar with the disease as he did not explain what really is all involved with CD, what effects it has and had no suggestions on change in diet or pain management.
Fignewton212, I appreciate your input and I see everything you're saying in my husband. I do not blame him or resent him by any means, nor am I complaining, all I want for him is to feel better and be able to live a pain free life. I truly feel for you and him of course and it hurts me to know that there's nothing I can do to help, I hate to see him this way and am, like him, furious to discover how little doctors actually know or seem to care about helping people suffering from this disease.
As of June 1st I will be eligible to switch to a PPO plan which will help with the doctors office fees and my husband has reduced the dose of Sulfasalazine to 250mg twice a day to make it less harsh on his body. He's been on it for a week, we'll see how it works out. I don't know how a normal person with a full time job is supposed to take any kind of medication 4 times a day with a meal...
For now that's the plan we'll stick with since he is so tired of getting nowhere and does not want to go see yet another incapable doctor and his condescending nurses.
JaSanne, you mentioned an elemental diet, what does that involve?

Once again, I appreciate all your advice and input. Please keep it coming, I am very glad I decided to join and post on this forum!

Post Edited (Hexe) : 4/18/2015 12:38:17 AM (GMT-6)

Posted 4/18/2015 12:32 PM (GMT 0)
Hi, and we are glad you joined also :)

Crohns is a bit different for us all but it does bring us all together! I take Pentasa, which is mesalamine as well, but it delivers specifically to the small intestine instead of the large. It's also an expensive RX, if I fill it at any walk-in pharmacy (to the tune of $190 a month). Turns out that if I have it mail-delivered by CVS I can get the same prescription in a 90 day supply for $50. If there is a pharmacy number on your insurance card give them a call and see if they can help, there are often patient programs that are really helpful, as mentioned above.

Your husband might try 4-5 small meals instead of three 'regular' meals, and also Ensure and other supplements have been a huge help to me during this last flare and even afterwards.

Please find him another GI. Many of us search thru several docs before we find one that listens and has experience with this complex disease. Don't give up and please feel welcome here, it's a great place. :)

I recently joined this board too, and am so glad I found this community!
Posted 4/18/2015 12:42 PM (GMT 0)
Hi Hexe. We here at the forum hear you and know too well the pain and anguish that this disease causes to patients and also to the loved ones around us. Just know and believe that things can and will get better...but first you must get on the right track,

As far as finding a competent Dr.....one who really knows all that's out there, I find it is best to go to a DR. whose practice is limited to the treatment of Crohns & colitis only. The garden variety Gastroenterologist I have found is often well over their head when it comes to treating the monster that is Crohns.

Beave's recommendation to go to the Crohns & colitis Foundation Of America (CCFA) is an excellent one. They can give you the top Drs. in your area & they are wonderful for support. Perhaps they might even be able to tell you where to go to get financial help.

There are a lot of medications out there that can really make a difference and potentially bring on sometimes remission, or if not that, at least improve symptoms and quality of life.

I myself am a fellow Crohnie. I have been on a lot of stuff. A medication like Humira could potentially turn his life around.

Stay strong..be positive.
I hope and pray things get better for your husband & for you & your family , who suffer collateral damage due to this disease.

Please keep us informed of his status & progress (fingers crossed).

best.
Posted 4/21/2015 3:34 AM (GMT 0)
Thanks again to everybody who responded.
We are going to wait until after June 1st when we qualify for a different insurance plan to go on the hunt for a new GI. In the meantime, he is taking Sulfasalazine starting with 2 pills a day instead of 4. I still don't know how he is supposed to take 4, that would mean one every 6 hours.... When does he sleep?
We shall see in time I guess.
Would you suggest going on a gluten free diet? Also, should he avoid dairy?
Posted 4/21/2015 4:16 AM (GMT 0)
He can certainly try going gluten free and/or dairy free. Some people try that and find it helps; others try that and find it makes no difference. It won't hurt to try - just make sure that if he's cutting out those foods, that he gets calories elsewhere to make up for it.
Posted 4/21/2015 12:04 PM (GMT 0)
I think you might want to make an appointment in June for a new GI, but call now. It often takes several months to get in with a new doc, and then you won't have to wait even longer. The Crohn's foundation has a good doctor referral service. You can see if they can give you some names: www.ccfa.org. I think you have a Mayo clinic there in Phoenix...I don't know how close you are, but that might be a good option too. Sorry both you and your husband are having such a hard time!
Posted 4/21/2015 12:43 PM (GMT 0)
I take my meds in two groups - morning and bedtime. There's no need to take one every 6 hours. This assumes he's taking the enteric coated or delayed release sulfazine. Most of our meds are meant to release in the colon.
Posted 4/21/2015 8:26 PM (GMT 0)
Thanks, beave, we might try a different diet to see if it does anything.
Gumby44, my company is negotiating with different insurance companies to find the best fit. Until I know who we're going to be insured with my hands are going to be tied because I won't know which docs are covered. We live in Tucson, so Phoenix would be too far. But I'll check out the foundation's website when the time comes.
And kazbern, my husband got prescribed Sulfasalazine 2g a day which doesn't come as extended or delayed release tabs according to the pharmacy. And that's what Humana, our insurer, suggested we try since it's the most affordable drug on our plan... I'm so sick and tired of having to rely on these people and doctors who obviously have no clue or don't care enough... feeling completely overwhelmed.
Once again, thank you all for your kindness and advice, I'm learning so much more about this disease thanks to you.
Posted 4/21/2015 8:31 PM (GMT 0)
I take sulfazine too and I get it with an enteric coating. and it is cheap.
Posted 4/21/2015 8:37 PM (GMT 0)
Is sulfazine the same as Sulfasalazine?
Posted 4/21/2015 10:02 PM (GMT 0)

Hexe said...
Is sulfazine the same as Sulfasalazine?

Yes, same thing, as far as I know.
Posted 4/22/2015 2:50 PM (GMT 0)
Yes, they are the same.

http://www.webmd.com/drugs/2/drug-22470/sulfazine-ec-oral/details
Posted 4/22/2015 8:34 PM (GMT 0)
Well, dang it. Why in the world would this silly doctor not prescribe the extended release then?! I just got a 90 day supply of the regular pills that need to be taken 4 times a day... man, I'm so sick and tired of this already. Sorry, I'm venting. >:(
Posted 4/22/2015 11:42 PM (GMT 0)
Sulfasalazine is an old-fashioned drug and poorly tolerated by some people. I had bad reactions to the mesalamines: when some idiot doctor prescribed me sulfasalazine, I thought I was dying. You could not pay me to take that med ever again. Also, it's only really useful for colonic disease - why it's being prescribed for small bowel disease, god only knows.

I'm so sorry your husband is being given the runaround. Dietary changes might give him some relief in the short term: a low-residue or even liquid diet. I hate steroids, but they can work miracles in the short term, bearing in mind their myriad drawbacks. For maintenance meds which stand a chance of working, your husbands needs to try immunesuppressants (6MP, azathioprine) or biologics (Remicade, Humira). See if this GI will agree to prescribe 6MP or azathioprine, since they do take 3-4 months to start working: they're not fast-acting :-/
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