Doing a little venting here.

[SarahBear]

Well, I had a pill cam done on August 8th, and just had my follow-up appointment on September 11th.

Back story: I was diagnosed with Crohn's in 2008, after a Prometheus test came back positive and a pill cam showed the disease throughout my small intestine. Since then, I lost medical insurance and my GI left. I regained insurance this year and finally found a new GI.

For some reason, they scheduled me with the PA instead of the actual doctor. She hadn't seen my medical records, as I had hand-delivered them to the doctor himself on the day of my pill cam (the office of my previous GI seems to have misplaced them, so they couldn't get them from there) and he hadn't scanned them into their system.

She came in and told me that the blood test was negative and the pill cam looked normal, so, "He probably has a plan for finding a diagnosis." :shifty: Well, that was kind of my biggest fear going in there. The old, "We don't know what you're talking about - you're fine!"

I told her both of these tests had shown Crohn's disease previously, so she scampered out and I waited for the doctor. He came in and told me 1) the blood test isn't always accurate, and 2) the pill cam can miss things. But, basically, I look healthy. Which would be great news, of course, except for the fact that I've been having fairly bad symptoms for the past six months or so. Worse than when I was diagnosed, actually.

He said that since the tests showed it before, they're going to continue treating me for it. He doesn't know why I feel so bad, if everything looks good. So he started me on Pentasa, which I'm supposed to take for three months and then go let him know if it helps.

I can't swallow the Pentasa. They're huge, and I've always had problem swallowing pills (my previous GI had me on methotrexate because of this). I've been practicing a lot, and I can take little ones now. I'm planning to get birth control pills instead of patches so I can have something little to practice with on a daily basis. So, I'm working on it… but I just can't swallow the Pentasa. I don't know what to do.

Basically, this just sucks. I mean, do they not think I have Crohn's? What do they think is wrong with me? I don't know what's going on here.



Well, there's my vent.

 

[Jennifer]

Sorry to hear that your doctors are stupid SarahBear. Any chance you can get your actual records from the place you had the tests done? This way you know for sure they are looking at the real results from those tests. Another thing is that they should be doing further testing. In the meantime is there any way you can keep requesting a referral to an actual specialist and suggest the they do further testing? Be sure to let them know if your symptoms get worse before the 3 months is up.

As for the pills, do you have a hard time swallowing regular food? Do you always have to swallow tiny bites to get things down? Or is it just the thought of swallowing a pill that makes it difficult? What I usually do when I take my pills is take a drink and leave a little in my mouth and then tilt my head back and drop them all into the liquid at once and swallow everything and take another drink after. Just starting out though you can do them one at a time obviously. When its a huge horse pill then I make sure I have a little more liquid in my mouth so it goes down easier.

 

[Cross-stitch gal]

Hi Sarah,
I too am on Pentasa and still have some trouble with the pills going down sometimes. Crabby's correct. There's no way I could take both pills together with them being so big. What I end up doing is swishing the pill in my mouth before hand to get some saliva on the pill, then take a drink which makes things a little easier. My best way to get them down is when I happen to have a milk shake. The pill then slides down better and seems to hurt less. Hope this helps...

 

[SarahBear]

Sorry to hear that your doctors are stupid SarahBear. .

That made me laugh!

The records I gave them are the same as what they would receive from the previous doctor's office. When the doctor I was seeing left, the office mailed to me everything they had on file. They have since lost or disposed of them; the current doctor's office tried for upwards of a month to get them, with no luck. All they still have is the results from my colonoscopy, which showed nothing because the disease was found in my small intestine. Why they would keep that, I have no idea. :/

The doctor I'm seeing now is a GI. I'm kind of surprised he didn't request any further testing, but I think he assumed that since the Crohn's was definitely there before, it's just hiding and trying to mess with us now (seems like something it would do, right?). I think I'm going to have to call his office today or tomorrow and tell them that although I've been trying for a week, I've had no luck with the Pentasa.

Usually, I can swallow food fine - that's actually how I manage to swallow pills. I have to hide it in food (usually a raspberry - they have a nice little pill pocket built in) and swallow the bit of food whole. I've tried just about every trick in the book, and that's all that's worked for me so far. It has to be just knowing that it's a pill that causes problems. Doctors like to point this out, but there's nothing I can do about it. I definitely want to swallow them. It'd make my life easier.

Cross-sitich gal, I'll try a milkshake - that sounds like it might work, if I can get the pill lost in it when I take a drink. I don't suppose Pentasa comes in smaller doses that I could take more of, does it? :/

Thanks for your responses!!

 

[sickofcrohns]

Just wondering -- how did you swallow the PillCam if you have trouble swallowing pills?

Have you tried putting pills in jam or yogurt or in little balls of soft bread (washed down with lots of water, of course)?

Hope it all works out.

 

[SarahBear]

Just wondering -- how did you swallow the PillCam if you have trouble swallowing pills?

Have you tried putting pills in jam or yogurt or in little balls of soft bread (washed down with lots of water, of course)?

Hope it all works out.

They knocked me out and shoved it down my throat! Haha. It's the same basic concept as an endoscopy - they just put you to sleep, put the scope down your throat, and drop the pill.

Applesauce works well for small pills, and bread (with mayonnaise on it, so it's slippery) has worked before, too. I'll try the bread again - I haven't tried it with mayo with the Pentasa. That sounds disgusting…

Thanks!

 

[Ckt]

I was on pentasa years ago and can't remember the pills being so large as the NUMBER of them being ridiculous!i think I took 16 pills of pentasa a day!jeez! It was just too much with very little effect.
Your doctors sure aren't making your illness any better are they?! It can be frustrating to find the right fit. My last gi doctor was extremely supportive, compassionate, and kind but had reached a point where she just wasn't sure what to do. She also told me everything on my last colonoscopy was fine and I was in remission. When I got the reports, it said very contradictory results..I had moderate ileitis with crypt abscesses on pathology reports and several aphthous ulcers. Fortunately, I was mad enough to to to another er in a flare up and with kidney stones and met a great colorectal surgeon who also treats IBD medically! I completely scored with him! He has been fantastic so far!
So the moral of the story is: don't give up looking for the doctor that is the right fit for you and don't stop being your own advocate!its frustrating and depressing when you can't get the treatment you need to feel better. I'm not sure I understand why there's a question if you have IBD or not since the tests and your symptoms clearly shows you do!
If there's a university hospital near you, I would suggest going there. I like them because they see many weird cases and look outside the usual set of symptoms and tests results. Also, you aren't alone in that my labs have always been normal, my inflammatory markers have never been raised one bit. But I have definitive crohns by full thickness biopsy from bowel removed in a resection from one of the best IBD clinics in our part of the USA.i have had 6 resections and been resisitant to most crohns meds so It can certainly happen!:kiss:

 

[SarahBear]

I did just manage to swallow two of them, after many, many attempts and an entire box of raspberries! I'm so relieved and very hopeful now!

Ckt, you're right - there is a crazy amount of them. I'm supposed to take two of them four times a day. Ugh. It's going to be rough until I can get the hang of it, but I'm definitely feeling like I can, now.

Doctors are great at making things worse, haha! I actually really like my doctor, though - the problem was that they scheduled me with the nurse, and she came in and told me the exact opposite of what would have been good, and seemed to have no understanding of what she had just done. The doctor came in and seemed to realize it, because he stressed that the negative test results didn't mean that he doesn't believe me about my pain. He seemed to understand the situation and how it made me feel - she was just oblivious. I don't think I'll let them schedule me with her again.

There aren't really any university hospitals around here, I don't believe. My mom's friend suggested to her that I go to Johns Hopkins, and my mom is pushing that I go for a second opinion. I don't see much of a point, though - if the test results are negative for this doctor, I can't see how they would be any different for another. Since I already have a diagnosis and there doesn't seem to be any reason to think I have anything other than Crohn's (like I said, the test results before were pretty clear, and my previous GI and a team of other doctors all looked them over and came to that conclusion) I'm not sure that it would be worth the travel time and expenses. :/

Thanks for your response and sharing your story!! I'm glad you found a good doctor!

 

[Cross-stitch gal]

I've also been told about this stuff called pill glide that's a spray in which you use just before taking pills. This stuff is found at Rite Aid, Walgreens or other pharmacy places like that. Unfortunately, I checked to see if these pills come smaller & they only come in smaller doses not smaller pills

Glad to hear that you were able to get 2 down Sarah! :cheers: Take care. Lisa

www.flavorx.com/products/pill-glide/

 

[SarahBear]

Thank you very much for the info! I'll look for the spray. Do you happen to know how it works? I guess from the name that it just makes the throat slippery? Haha.

 

[Cross-stitch gal]

Thank you very much for the info! I'll look for the spray. Do you happen to know how it works? I guess from the name that it just makes the throat slippery? Haha.

No problem! I've never actually used it. But, from what I read it seems like the stuff just kinda numbs the throat in order for the pills to go down. Plus, helps keeping you from gagging & hurting...

Never got the stuff because I thought it was kinda spendy. But, it'd be worth it if it actually can work for you!

 

[Ckt]

I'm glad to hear your doctor is listening to you and that he's willing to treat your symptoms. Good for you for pushing through and trying so hard to take those horse pills too! I don't know what pentasa looks like these days but mine had these granule type things in them. Does yours have the same or are they solid pills?maybe your doctor has some ideas on how you could tolerate them better? If they are granules, maybe you could take them out of the capsule and put them into applesauce or something?you might want to check with your doctor if that's a possibility, idk..
Glad too that the doctor is aware that his nurse made some mistakes in talking with you!he/she would need to know For yourself and others too!
Is john Hopkins closer to you than the Cleveland clinic? I'm facing going to get another viewpoint next week in Chicago which is 5 hours away from me so I completely understand not wanting to make the trek due to time/money/energy expended. My finances are very limited so it's pretty huge for me too. I just figure another view even on the standard tests done could be helpful for me. I'm not expecting the interpretation of the tests will be so different but maybe the treatment or recommendations they give may add another piece to the puzzle.i do know the Cleveland clinic is supposed to be really good in IBD. And they are very organized in getting you appointments and places to stay,etc.
Hoping you continue to tolerate your medicine and find the care you need!

 

[SarahBear]

Thanks again, Cross-stitch gal. I'm wondering if the numbing spray used for kids' sore throats would be about the same thing? Could be a cheaper alternative! I'll definitely be looking for it, though.

Ckt, they are capsules with granules inside. The forum wiki here suggests opening it and putting the granules in water, then swallowing it immediately. It seems like that would work well, but as my doctor didn't mention it (and I mentioned having trouble with pills) I'm a little reluctant to try it without giving his office a call first. I might do that tomorrow. I swallowed two more yesterday, but haven't had any luck since then.

According to google maps, Cleveland Clinic is about an hour closer than Johns Hopkins, but they look about even to me. My mom is pushing Johns Hopkins, I think, just because she thinks she should go with me and visit with her friend. However, I wouldn't be taking her with me, anyway. I'd rather take my boyfriend, who would be far more supportive and is the one paying my medical bills (and he would be paying all travel expenses, as well).

I think I'll look into Cleveland Clinic and Johns Hopkins. My doctor started me on the Pentasa and wants to see me back in three months to see how it did, so I probably won't make any other appointments unless things get worse before then, or it doesn't help. You're right - maybe a doctor there has seen situations like this before and would have more ideas on how to treat it.

Thanks again, everyone.

 

[Ckt]

Sarahbear..I feel it's never a bad thing to seek other views in regards to treatment options. I did it when crohns was first mentioned to me and I went to u of Chicago then. I had basically been undiagnosed for 25 years and as I've probably mentioned, my crohns presentation wasn't fitting into a neat little box. They diagnosed it definitively and I'm grateful for that!
I would check with your doctors office about putting the pentasa granules into something easier to swallow down..maybe you can talk to them soon so you get full benefit from it. It's a shame it takes so long to see any results though.. I know I'd be frustrated and wanting to know if I'm on the right track! I think it's reallly great that you're willing to do all you can to get a handle on having crohns though!
Keep posting to let us know how things go! And if pentasa doesn't work, at least you know there are plenty of other options available!

 

[SarahBear]

I'll call them tomorrow and make sure! I think I'm going to get the hang of swallowing them, but until then I still need to be taking it regularly. Right now, I'm not having much luck with that.

Thanks!