I've been on the wrong meds!!!!!!!

[dustydshook]

:ybatty:

O.k. going to try and make a long story short. I started flaring somewhere around Thanksgiving of 2007. Got in with a G.I. have been flaring ever since. severe pain, bloating, diareah, constipation ect. ect. ect. Mainly have been treated with pentasa except for a short stint on humira which gave me a severe fungal infection so I had to stop taking. After that I had to have my terminal illeum removed in may because it was strictured to the size of a shoe string and had three fistulas. Was in and out of the hospital for two months with infections from the surgery ended up with a pic line yada yada yada. Well the surgery was in may and here it is August and about two weeks ago ended up with a big ole flare again. go to er and then GI so the GI says he is sending me to a Crohns specialist at the University of MD in Baltimore. Went yesterday, She tells me the dumb GI who has had me on Pentasa for the past 2 1/2 yrs has had me on the wrong meds. Pentasa is mainly used for crohns disease of the large bowel and mine is in the small bowel. WOW! is all I can say. So does this mean all this time I could have been better? I wouldn't have had to have surgery? I could have had a Life? I wouldn't have lost my job? I wouldn't be losing my home? I wouldn't be losing my sanity? IF i had been on the right meds!!!!!!

She got me in for next week for a colonoscopy so she can see whats going on for herself and will recommend a proper medication then. In the mean time she says to throw away the Pentasa. It is 40 bucks a month and I just filled it. I have taken two pills anyone need some????

I feel like I was losing my sanity slowly but surely from all the pain and now I feel like I may have gotten some of that back yesterday I could just kiss this new doc :kiss:

 

[Crohn's 35]

HI Dustyshook, ok, this is really contradictory because I too have Crohns in the Ileum and it is said that it is made for the small intestine. Also can be used for the large colon. The problem is the Pentasa is a very mild inflammatory and if you have Dirheah alot most times it keeps on going to the outdoor. Asacol is prescribed mostly for UC so I think your previous doctors just should of added to the Pentasa. I am on and off it and my personal opinion it is to mild to really do anything for mod to severe cases. Another opinion (only my experiences ) is nothing works for my narrowing or strictures, they are best to be removed.

At best you are being looked after now, I know it is like closing the barn door after the horses are gone but everyone must realize there are different types or infections, abscess and bacteria growth. There fore causes different pain and severity. Good luck in the future.:thumleft:

 

[dustydshook]

What she told me is that the pentasa only has a residual effect on the small bowel. So I looked it up on the web and yup sure enough it says it is used for the large bowel.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000880

I had a severe stricture my illeum was about the size of a shoe string and three fistulas. So I am assuming that I should have been on something a lot stronger a long time ago. I was on Humira for about three months starting in Dec 09 but think it was already too late at that time. Then they had to take me off due to a severe fungal infection.

I had my colonoscopy today and she said that my large bowel looked great and the surgery sight looked good. She doesn't know if the pain I am having now means that the crohns has moved further up into my small bowel or if I am having bad scar tissue issues as the pain is in two places my lower right quadrant and upper left. So she will be scheduling me for an MRI and a pill cam sometime next week. I am gratefull that all looks well so far, just wish they could figure out this pain it is excrutiating expecially the lower right. Three yrs of this pain is way too much I had pinned so much high hopes on this surgery just feeling depressed and let down that it has improved the way I feel.

 

[Lucy]

I'm on Humira and so far no fungal infection. Where did you guys have your fungal infection? What should I look for? I'm glad you found a good doctor. Good Luck with your treatment.
Lucy

 

[dustydshook]

Mine tongue had hairy white stuff growing on it that did not go away when I brushed it. It also felt like I had a huge hair ball stuck in my throat.

 

[crazycanuck]

Wow! I had this too!!!!!! I was on asacol for 2 years. Asacol is very similar to pentasa and my new doctor practically flipped when she found out. I was switched to imuran whivh worked for a while but ive progressed to the stage where remicade is going to start anytime now. Im sorry to hear that but i know exactly what your going through except the surgery. I went from very mild crohns to now quite moderate because of that stuff and that doctor. Real sorry to hear that but atleast you now know. Gl with whatever comes next

 

[Billie Selene]

Well, I wonder if I am on the wrong medicine??!?!?!?!? I am taking Entocort and Asacol.... When I was first diagnosed with CD I was constipated a LOT and was having bleeding episodes maybe twice a month..... thought it was just really bad Hemorhoids! Then I got diag'd and started on the medicine and now I am bleeding daily with almost diarhea like BM's every day.... 8 to 12 every morning with a LOT of blood for the first 4 or 5 then tapers off then my DH settles out for the afternoon. Was it just coincidence that I started all this flair stuff right as I was diagnosed or is the medicine causing the symptoms? Got an appointment with Dougie next week... 3 weeks after he did an endoscope and said he took several biopsies.... Hmmm, they don't take biopsies of "normal" healthy flesh do they????

 

[dustydshook]

About the biopsies, yes they do. My new specialist took some biopsies in my large colon even though she said it looked great. Google your meds is all I can tell you about them I know I will be doing it from now on.

 

[nycguy101]

Dusty,

I hate to say it, but you're wrong here, and you should probably edit your first post lest you discourage members from taking the CORRECT medication for small bowel Crohn's disease. Pentasa, as far as I know, is the only 5-ASA that affects the small intestine. Pentasa can also be prescribed for colitis (which is why you see it mentioned as being used for large bowel inflammation), but there are also other 5-ASA drugs that reduce inflammation in the colon. Pentasa, however, is less effective than a variety of other medications and is normally only a first-line treatment before moving onto other drugs. It has almost no side effects, so its worth a shot.


Pentasa can be effective in treating inflammation in the small intestine and is currently the most commonly used 5-ASA compound for treating mild to moderate Crohn's disease in the small intestine.

http://www.medicinenet.com/crohns_disease/page7.htm

CONCLUSION: In patients with Crohn's disease of the small intestine, Pentasa microgranules start releasing 5-ASA in the proximal small intestine, acting locally to exert its beneficial effect.

http://www.ncbi.nlm.nih.gov/pubmed/7654894

I am honestly shocked though that you haven't been prescribed some sort of corticosteroid like entocort or prednisone and jumped straight to humira. Those are relatively standard treatments with high effectiveness. Did the doc screw up by not giving you steroids? Probably, but giving you Pentasa first was correct.

 

[dustydshook]

Unfortunately I had severe crohns disease and had surgery in may to remove my terminal illeum due to a severe stricture and had three fistulas removed. The web site you refered me to.

http://www.medicinenet.com/crohns_disease/page7.htm

stated this
"If pure 5-ASA is taken orally, however, most of the 5-ASA would be absorbed in the stomach and the upper small intestine, and very little 5-ASA would reach the ileum and colon. To be effective as an oral agent in treating Crohn's disease, 5-ASA has to be modified chemically to escape absorption by the stomach and the upper intestines."

exactly what the website in my first post said that it has little effect on the termimal illeum and what my new GI specialist said. However this website does say it has little effect on the large bowel and the website I posted said it was used mainly for the large bowel. So webmd and the gov website i posted have conflicting statements on this issue.

It also stated

"Pentasa is a capsule consisting of small spheres containing 5-ASA. Pentasa is sulfa-free. As the capsule travels down the intestines, the 5-ASA inside the spheres is released slowly into the intestine. Unlike Asacol, the active drug 5-ASA in Pentasa is released into the small intestine as well as the colon. Therefore, Pentasa can be effective in treating inflammation in the small intestine and is currently the most commonly used 5-ASA compound for treating mild to moderate Crohn's disease in the small intestine."

And this

"In the treatment of Crohn's ileitis or ileocolitis, the dose of Pentasa usually is four 250 mg capsules four times daily (a total of 4 grams a day). For maintenance of remission in patients after surgery, the dose of Pentasa is between 3-4 grams daily."


So in my case the medicine was not right for me. It didn't have much effect on the severity of the disease in the location it was at in my body plus my GI only had me on 2 grams a day. Well it may work for some, and I am in no way trying to discourage anyone from taking it, it was completely the wrong med for my situation. And that was my only point was it is wrong for me not for anyone else. I would just like to encourage every one to do their research and not take what their doc says as gospel.

 

[dustydshook]

Also the second web site that you posted with the study using for the small bowel is the same web site that I posted in my first post that says it is used for the large bowel just a different article on the same site. So which one is correct????IDK

 

[nycguy101]

Unfortunately I had severe crohns disease and had surgery in may to remove my terminal illeum due to a severe stricture and had three fistulas removed. The web site you refered me to.

http://www.medicinenet.com/crohns_disease/page7.htm

stated this
"If pure 5-ASA is taken orally, however, most of the 5-ASA would be absorbed in the stomach and the upper small intestine, and very little 5-ASA would reach the ileum and colon. To be effective as an oral agent in treating Crohn's disease, 5-ASA has to be modified chemically to escape absorption by the stomach and the upper intestines."

exactly what the website in my first post said that it has little effect on the termimal illeum and what my new GI specialist said. However this website does say it has little effect on the large bowel and the website I posted said it was used mainly for the large bowel. So webmd and the gov website i posted have conflicting statements on this issue.

You have misread; that statement is about 5-ASA in its pure form. There is nothing conflicting about it. Nobody sells 5-ASA in its pure form because it would be useless. Every formulation is some form of time release ASA. Pentasa releases the drug throughout the small intestine and colon, while other formulations like Asacol release it primarily in the colon.

"Pentasa is a capsule consisting of small spheres containing 5-ASA. Pentasa is sulfa-free. As the capsule travels down the intestines, the 5-ASA inside the spheres is released slowly into the intestine. Unlike Asacol, the active drug 5-ASA in Pentasa is released into the small intestine as well as the colon. Therefore, Pentasa can be effective in treating inflammation in the small intestine and is currently the most commonly used 5-ASA compound for treating mild to moderate Crohn's disease in the small intestine."

Exactly, its a weak drug that's used as a first line treatment. That's why I said that its shocking that your doctor did not at least try corticosteroids, as other treatments are often used in conjunction with Pentasa. That does NOT mean he gave you the wrong drug, it means his overall treatment course was incorrect. He gave you the correct drug as a first line treatment.

And this

"In the treatment of Crohn's ileitis or ileocolitis, the dose of Pentasa usually is four 250 mg capsules four times daily (a total of 4 grams a day). For maintenance of remission in patients after surgery, the dose of Pentasa is between 3-4 grams daily."

So in my case the medicine was not right for me. It didn't have much effect on the severity of the disease in the location it was at in my body plus my GI only had me on 2 grams a day. Well it may work for some, and I am in no way trying to discourage anyone from taking it, it was completely the wrong med for my situation. And that was my only point was it is wrong for me not for anyone else. I would just like to encourage every one to do their research and not take what their doc says as gospel.

Again, correct drug, incorrect dosage. I may be mistaken, but by saying, "the dumb GI who has had me on Pentasa for the past 2 1/2 yrs has had me on the wrong meds. Pentasa is mainly used for crohns disease of the large bowel and mine is in the small bowel." it seems that you're implying that Pentasa is not to be used for small bowel Crohns when in fact it is the ONLY 5-ASA formulation that treats small bowel Crohns. Pentasa is also one of the few Crohn's treatments that has very minimal side effects, so it would be a shame if someone were to subject themselves to more dangerous treatments that cause horrible side effects without at least trying less dangerous drugs like Pentasa first.

 

[nycguy101]

Also the second web site that you posted with the study using for the small bowel is the same web site that I posted in my first post that says it is used for the large bowel just a different article on the same site. So which one is correct????IDK

Pentasa treats both. It is one type of mesalamine delayed release formulation. Mesalamine, the active drug in Pentasa, is primarily used in other formulations like Asacol to treat large bowel Crohns and ulcerative colitis, which are much more frequent that small bowel Crohns.

 

[dustydshook]

[/QUOTE] it seems that you're implying that Pentasa is not to be used for small bowel Crohns when in fact it is the ONLY 5-ASA formulation that treats small bowel Crohns. Pentasa is also one of the few Crohn's treatments that has very minimal side effects, so it would be a shame if someone were to subject themselves to more dangerous treatments that cause horrible side effects without at least trying less dangerous drugs like Pentasa first.[/QUOTE]

I was quoting the website and not being a scientist here I assumed that when I typed in pentasa in my search bar and the web site that I quoted saying it was for the large bowel came up I assumed it was talking about pentasa and not some pure form of it. (if that makes sense) which is why I stressed to research your drugs and that it is not right for me or my situation. Never once did I imply that it was a bad drug and no one should take it. I completely agree with your statement [/QUOTE] Pentasa is also one of the few Crohn's treatments that has very minimal side effects, so it would be a shame if someone were to subject themselves to more dangerous treatments that cause horrible side effects without at least trying less dangerous drugs like Pentasa first.[/QUOTE]
I am not at all trying to be the poster girl for not taking pentasa...Just the poster girl for making sure that you are on the right medicine for your situation. If I mistakenly mixed up any info that I read I truely appologize.

I did reread the website and understood it a little better where it is altered from its pure form into a time release formula so that it doesn't absorb right away so that it can be absorbed further down.

Just my old doc should have started me on something stronger when Idk after the first couple of months on pentasa and it not working for me then maybe I could have avoided 2 1/2 yrs of extremely debilitating pain and suffering and a resection surgery! It is just discouraging to know that maybe I could have been better a long time ago. I was on pred. but still had terrible symptoms even on it. He was a very conservative doc wouldn't even prescribe pain pills when all I could do was lie on my bed and scream in agony. I would have to go to ER every time to get relief. I was in ER 13 times in 2008, 13ER and stays in 2009, and 25 ER and hospital stays so far in 2010.

 

[Lucy]

I took Pentasa for a couple of years, and when it wasn't helping I stopped it and am on just Humira. I saw no changed in anything when I went off it. My doc may be changing me to something other than Humira because it's not working very well anymore. The new inj. is only taken once a month, but I don't know the name of it yet. The only thing I know for sure is Pred. is a very last resort for me. Good Luck to all.
Lucy

 

[Billie Selene]

About the biopsies, yes they do. My new specialist took some biopsies in my large colon even though she said it looked great. Google your meds is all I can tell you about them I know I will be doing it from now on.

Well, Just got the lab report from Doogie..... He actually had me come in instead of just having an office wienie call! LOL! It turns out they had minor cause for the biopsies... esphogus (sp?) had erosion, some tearing and some "friable" areas..... what.... my esophogus is crumbling and breaking up????? That's what the Net says "Friable" means! .... anyway the stomach shows erosion too.... all from my GERD problems that I have had for years.... and Doogie says that could be linked from the CD..... things that make you say... hmmmmmm !
Now back to the actual on topic part..... he also says my increased bleeding and Dh could be from not enough steroids.... he is changing my entocort to regular old PREDNISONE! Yippeeee.. be careful what you ask for .. right?!?!?!?:sign0085::sign0085: