Need help to support my boyfriend

[foreverhopesndreams]

I have signed up for this forum in hopes to get some insight into Crohn's. My boyfriend has been in pain for basically all year but didn't go to see a doctor until August, actually he went to the ER and discovered his appendix ruptured. That was taken care of and about 3 weeks later the pain came back so they ran more tests and found a "mass". He was sent to a specialist and today had a colonoscopy and was diagnosed with Crohn's. He has been prescribed Asacol DR and it's extremely expensive! I am wondering 1) what can I do to help make him comfy as he goes through this and 2) is there any help to pay for this medicine or a cheaper medicine? After insurance, we still paid $150 for it for 100 pills! Any and all info is appreciated:ybiggrin:

 

[keke77004]

hi i found out my dx at the sdame time in aug. try to see if ur boyfriend can get insurance from the state r try a walgreens for cheaper meds hpe he feels better

 

[acheallova]

Goggle asacol® and fill out the form from the company. You could qualify for up to a year of free or reduced meds. This is the first place i send my customers. The manufacturers of these types of meds offer relief programs. It's worth checking out Welcome to the forum, feel free to ask anything and take advantage of the support you'll find here.

 

[foreverhopesndreams]

I did that and the website doesn't have anything for me to fill out. I found phone numbers but nothing that says anything about receiving discounted meds.

 

[David]

Hi there and welcome to the community. I realize you are asking about Asacol but I'm curious, is your boyfriend's disease in his small intestine, large intestine, or both?

 

[foreverhopesndreams]

The doctor didn't say. I am wondering if he will go over this with the follow up appt in the next week or 2? Does it make a difference what part it is in and if so, how?

 

[David]

It makes a huge difference. The thing is, Asacol is a medication for the treatment of Ulcerative Colitis as it is formulated in a manner where it releases medication to treat disease in the colon. Most people with Crohn's Disease have some small intestine involvement in which case Asacol would do little to nothing depending on the person's intestinal pH. In addition, Crohn's Disease is transmural meaning it can affect every layer of the intestine whereas Asacol only treats the top layer.

I personally am not a fan of people with Crohn's Disease only being on mesalamine (the active ingredient in Asacol). And if they have small intestine involvement, then in my opinion, it is quite possibly the wrong medication.

I realize this is not what you want to hear Here is the Asacol prescribing information if you'd like to double check what I said.

 

[foreverhopesndreams]

I was wondering about that. The papers that were sent home with him were for colitis, but the doc specifically told us that he has Crohn's disease. I also found it odd that basically, that is ALL the doctor told us. Nothing about how to cope with it, what to expect, etc. Everything I currently know is due to my researching it on the internet as I am the Google Queen!:dance: lol. anyways, when this all started, a mass of some sort was found on the CT scan which is how the doctor that did his appendectomy suspected Crohn's. I do not know the exact location of his pain, but I do know it is right beside his right hip bone, the same area the infection went to when his appendex burst. Do you think it is possible that the doc wants to try to get the infection under control and then when he goes in for the follow up appt that is when the doc will go over the details? If that's the case, then this doc is a little backwards on his practices.

 

[foreverhopesndreams]

Ileocolitis is what his diagnosis is.

 

[David]

Ileocolitis means he does indeed have inflammation in his ileum. As such, Asacol really isn't the best medication.

 

[foreverhopesndreams]

The medicine is actually working. He is going several days at a time like his old self, then it flares up majorly and he is in pain all over again. I guess it's a start.

 

[David]

Thanks for the update

Asacol is still the wrong medication though. At the very least, he needs something else as well. Long term, if he's only on Asacol, it will not go well.

 

[mbishop]

The efficacy of Pentasa and Asacol in treating Crohns is indeed in question. If, as David notes, it is only the surface layer that is affected, Asacol has been shown to dissolve in the terminal ileum. http://practicalgastro.com/pdf/October03/BallArticle.pdf . Best of luck, and thank you for caring enough about your boyfriend to find out about Crohns.

 

[David]

It's a crapshoot. As the study you linked states,

Disintegration data
for the Asacol® tablet are provided in Table 5. Initial disintegration of the Asacol® tablet occurred in the terminal ileum in four patients and in the ascending colon in one patient. Complete tablet disintegration was observed in three of these five patients and occurred in the terminal ileum, ascending colon and transverse colon, respectively. In the remaining two patients complete disintegration of Asacol® was not observed; for patient 03 the tablet core was still visible in the final scintigraphic image and for patient 07 the tablet core was located in the transverse colon at 24 hours post-dose and was not present in the final image

Asacol begins to disintegrate at pH 7 and above. As your article says:

Fallingborg et al, 1989 (6) reported that in 25% of healthy volunteers the pH of the gastrointestinal tract never reaches pH 7.

So a medication that is thought to act topically when Crohn's disease is transmural and it's a crapshoot whether it ever gets released in the terminal ileum or not. And even if disintegration does occur in the TI that doesn't mean sufficient medication is being delivered to inflammation in the terminal ileum. When I see people only on Asacol and they have ileal disease, it's a giant :facepalm:

It's improper management of Crohn's disease, period.

 

[foreverhopesndreams]

Huh?????:confused2:

 

[David]

I was responding to mbishop. Or is there something else you're confused about? I'm happy to elaborate on anything

 

[QueenGothel]

Just guessing here but I am assuming he is also on Predisone and if so his feeling better might be to the Predisone and not the Asacol causing his improvement. If this is the case watch him during the ween he could quickly relapse.

I agree with David about Asacols use being for only UC. Why take something that might help when the are drugs that are better suited for it. Also in regards to pH... Taking high amounts of probiotic help get the pH levels up so the Asacol breaks open. Also as gross as this sounds you should see the pill shells in the poop. As much as it stink to look for. :stinks: If he passes them whole you'll know before you get him weening the Predisone that the medication will need to be changed. This way you have proof for the GI. Happy hunting. I hope the GI is right and we are wrong for his sake.

 

[acheallova]

I do hope the right regimen is found quickly and response is good. Best wishes. - hugs-