Question regarding Pentasa and need advice about my situation

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Mrs_Mitchell
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 1/27/2010 10:40 AM (GMT -7)   
Hello, I haven't been on in a while because I have been having problems with my last GI doctor who didn't want to see me anymore because I was to scared to start remicaid. He never did a colonoscopy or anything and just seemed like he wanted to just to do what ever he wanted. I was on entocort EC for a little over a year but since I haven't had a doctor since October I had to taper off. I'm not really sure if it was helping anyway because I have had diarreah for over 2 years now and even while on the entocort i would still have it, I would have a few ok days where it wasn't watery D but then I would have watery D again. I haven't had a formed stool in almost 3 years when I got off the Depo shot (a birth control) and put the IUD in.
 
about a year ago I had a cyst and went to the emergency room, they told me that it appeared to be a bartholin cyst (which is on the lip of the vagina, sorry for to much info). I was told to go home and soak on and off. It became bigger and I was in more pain so I went back to the emergency room. A different GYN doctor saw me and was a ittle confused if it was actually a bartholin cyst or I guess a cyst from the crohn's. He said because I had 8 kids and it was so narrow between the rectum and vagina that he didn't want to drain it because it could cause problems so he sent me home and told me to soak it also. The next day it finally drained on it's own and I felt much better. After some weeks I started to notice when I would pass gas I would feel it come from my vagina (sorry again for to much info). Now this has been going on for about a year.
 
My old GI doctor never did any test regarding that and just told me to see GYN, I went to GYN and they told me to see my GI doctor so I got so frustrated from the back and fourth I haven't done anything about that. Then about 6 months ago I developed a abscess in my rectum. My GI sent me to a surgeon and i was tol to push on it an drain it because it would drain from the rectum when they would push on it. It wasn't that big at the time I went but after a few days I was in so much pain i went back and he made an slit to drain it and told me to soak a few times a day. i had to were pads for about 5 months and thought it would never stop and the pain wouldn't go away but eventually the dainage started to slow down and stopped for a few week or maybe even a month and I started to notice drainage again (a couple of weeks ago). I started to feel a small lump again but now I don't really feel it and it drains on and off. I also have huge hemroids so sometimes I don't know what the pain is from.
 
Ok, well this is what has heppened lately. Being that I didn't have a doctor I tapered off the entocort, when i went down to 2 pills I felt fine and then I had to go to 1 pill because I only had about 14 pills left. As soon as I went down to one pill I noticed my face started breaking out and fine bumps on my chest and face. They get very itchy so I was worried and went and asked the pharasist did it have anything to do with tapering off the entocort and she didn't believe so and told me to try a hydrocortisone cream which has not helped. I have been off the entocort since Jan. 20th and my face looks horrible and the fine bumps itch and so does the larger pimple ones. I saw a new GI doctor yesterday and because there was a mix up and the lady at the desk didn't put my name in the computer that I was there I almost didn't get seen. After 2 hours the doctor finally saw me but was in such a rush because the office was closed. I gave her all my papers that I had from every CAT scans, sono, and GI series that has been done over the last couple of years along with blood work that was done in October (showing my iron was VERY low). i am not sure if she was able to look at aeverything but I tried to tell her as much as I could while she was rushing along. As soon as I mentioned that i was not with the last doctor anymore because I didn't want to try the remicaid (especially because nothing else had been tried yet except Asacol and Entocort) she seemed like she didn't want to see me anymore. she started saying that maybe I need to go to a teaching hospital where they specialize in crohn's because she can't do remicaid. I was so shocked and started feeling very depressed because I just feel like no doctor will listen or take their time. She told me to start on Pantasa (2pills 4 times a day) and we will see if that stops the diareah. I asked her about taking Imodium because with the other GI doctor i was told to take it but she said "no". She didn't do any blood work and basically told me to just go to my primary care doctor for it. She was in such a rush to leave that she didnt even tell me when to come back. She told me that the Asacol and Pentasa was the same thing and if I am able to take Asacol then i can take Pentasa. She said it just works differently as far as were it breaks down in your intestines (or something like that). Then I go and google it and it sounds so scary to take, I read about people feeling worse, hair falling out,  back pain and stomach pain, and diareah. I am so scared that I don't know what to do. I have already lost 50 pounds but I believe that is because I won't really eat because I don't want to run to the bathroom all day and night. I never have stomach pain or constipation, just am always running to the bathroom.
 
I am so sorry this is so long but I have so much on my mind and am so scared. The lady that worked there at the front desk said she was so sorry that I had crohn's because it is a horrible disease. I had another doctor say that it is something you would never want to have in your life. I don't hear anyone say anything encouraging at all. I'm at the point that I am scared I'm going to die from crohn's or one of the side effects from the medications. Was the new GI doctor right when she said Asacol and pentasa are the same thing and I shouldn't have any side effects from it?  Should I try and find another GI doctor again and this time not give them my whole history and let them do all the test they need to. I havent had a colonoscopy in over 2 year now and when that GI doctor did it, as soon as he woke me up he said I didn't have crohn's but then ordered a small bowel series and it showed thicking where the small and large intestines meat so the he said I do have it and told me to take the asacol. I don't know what to do anymore at all. I have kids who need me to be there or them and this is starting to scare me so much. I also suffer from anxiety and panic attacks so that only makes it worse because I'm so scared, especially ecause I don't hear anything positive about living a normal life again.

Ditty
Regular Member


Date Joined Oct 2003
Total Posts : 24
   Posted 1/27/2010 10:54 AM (GMT -7)   
Mrs. Mitchell,

Find a new GI doctor immediately. When you make your initial appointment be sure to tell the receptionist that you have Crohn's disease and you would like to have some time to talk with the doctor. Hopefully she will pencil you in for more time than a normal office visit. Of course give the new md your complete history as best as you can remember it, but ask to start over, with a completely new plan. There are so many new drugs available to treat Crohn's. There must be something on the market that will help you with symtoms etc.

All of your feelings are so understandable. Feeling helpless and hopeless when sick is very common. But you do have control. You will find a doctor who can help you and you shouldn't give up until you do.

Good Luck!!

Mrs_Mitchell
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 1/27/2010 11:28 AM (GMT -7)   
Thank you so much Ditty, Unfortunatly I think that because i have medicaid/healthfirst I am just not getting a doctor that cares. I'm going to look on the list now and see if I can make an appointment with another doctor and let them know that I will need some time to talk with him/her. That was a very good suggestion you gave me. I haven't felt depressed in a while and now am worried al over again as if I just found out I have crohn's. I can't afford to lose any more weight so I need to do something. Any suggestions regarding starting the pentasa or should I wait and start with a new doctor?

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 1/27/2010 12:01 PM (GMT -7)   
Very good recommendations by Ditty!I'd suggest if you tolerated asacol then you shouldn't have trouble with pentasa, they are basically the same drug and may reduce or elliminate your frequent bowel movements then you could eat more and possibly gain back some weight. Slow down and don't panic your not going to die from Crohn's. When you research drug side effects dig deep, find a site that lists the frequency of each reaction. The most commonly reported 5-ASA Asacol/Pentasa related events were nausea 4.9%, headache 4.4%, abdominal pain 3.9%, diarrhea 3.4%, rash 2.8%, vomiting 2.6%, stool abnormalities 1.6%, back pain 1.0%, asthenia 1.0%, dyspepsia 1.0%, and pruritus 1.0%. There are more of course but all are under 1%. Or do as I do try the drug for 1 or 2 months and then look up the side effects if you feel you have one. Stop looking before as that will just make you feel worried. Rob
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Asacol, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


Mrs_Mitchell
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 1/27/2010 12:32 PM (GMT -7)   
Sighhhh, I just tried to call 5 different doctor's that the insurance gave me numbers for and once they found out I had Medicaid/healthfirst they transferred me to the clinic at the hospital (North Shore LIJ). they don't have an opening for an appointment until May. The lady at the appointment desk in the clinic said I would have to see a resident doctor and from what I told her she thinks I should try to get an appointment outside of the hospital with a doctor. She also said the clinic is only open for GI patients once a week and they have over 1000 patients being seen. She told me one way to get in sooner is to go to the emergency room and then they will have to give me a follow up appointment in 2 weeks but I am scared that I might get admitted because when I had my blood work done in October my iron was very low and some other test they did showed inflamation but the doctor said the test for inflamation that was done doesn't tell were the inflamation is. I am really scared and don't know what to do because I have 5 kids and no family to watch them if I have to get admitted. do they admitt you into the hospital if your iron is low? I don't know if i should just call the doctors office that I went to yesterday and make another appointment. We weren't sure if medicaid would pay for pentasa so she gave me a prescription for asacol too (just in case). im so scared to take the pentasa that maybe I should tell her the medicaid didn't cover it and go get the perscription filled for asacol since I have taken it already. I wonder why she gave me the pentasa as oppesed to just giving me asacol since I use to be on it. Are they really the same medications or does the pentasa have other stuff in it that would cause the side effects?

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 1/27/2010 10:57 PM (GMT -7)   
Mrs Mitchell,
 
It is true that Asacol and Pentasa are targeted at different areas - depending on where your Crohn's is active one might be more useful than the other. The following link takes you to an explanation of the different meds used for Crohn's. It also shows which areas Pentasa targets versus those Asacol targets.
 
 
Have you tried Mt. Sinai? They are one of the top IBD centers and some of their docs take insurance. The following link describes Dr. Lloyd Mayer and some of the plans he accepts...but they have other docs there, too. 
 
 

Mrs_Mitchell
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 1/28/2010 7:20 AM (GMT -7)   
Good Morning Everyone, I would like to thank everyone who took the time to read my long post. My last small bowel series that I took on 04-09-09 says:

The preliminary scout film reveals an IUD to be prescent in the projection of the uterus in the pelvis. Otherwise, the bowel pattern is non-specific. The barium flows freely from stomach through the duodenum into the small bowel. The visualized loops of jejunum are normal. There is some clouding of loops of the ileum. However, there is no evidence of seperation of the bowel loops in the mid ileum. There is seperation of the bowel loops in the distal ileum with infiltrative density into the mesentery with thickening of the mucosa of the small bowel loops of the distal ileum. There is also thickening of the mucosa of the terminal ileum as it enters the colon. However, there is no evidence of any fistulization between bowel loops.

IMPRESSION:

1. crohn's disease of the distal ileum wit separation of the bowel loops and mucosal thickening of these bowel loops. There is also mucosal thickening of the terminal ileum consistant with crohn's disease as it travels into the terminal ileum and ileocecal valve into the colon. There is no evidence of any fistulization at the present time.

2. The main finding is mucosal thickening and separation of the distal ileal small bowel loops at the level of the terminal ileum and in the region of the terminal ileum as it traverses into the ileocecal valve with mucosal thickening of the terminal ileum at this level. However, there is normal passage of the contrast through the ileocecal valve into the colon.

3. Normal transit time is 60 minutes

4. No evident fistula is demonstrated on this study

Well that was my last test done and I have no clue what it means and the only thing the doctor explained about it is "yes, you have crohn's". If anyone understands this do you thing I would do better on the Pentasa or the Asacol? I am still curretly taking the Asacol but because I was running out of medication I have only been taking 2 pills twice a day but I just got the prescription filled last night and will pick it up today. The doctor told me if my insurance didn't cover the pentasa to take the Asacol (4 pills 3 times a day).

NJMOM, I did go to an appointment at Mt. Sinai one time (in the clinic) and it was just to much for me. Because I suffer from anxiety and panic attacks I can't take the train or bus so I had to drive into the city from Queens. Between the gas, tolls, and parking in the city I spent over $60 which is something I can't afford at all. Then on top of that the doctor told me to just stop taking the entocort and thank God I found out that I should never do that and to taper off (by the pharmasist and people on this site). Then, there is no way to call and speak to your doctor or for him to call you if you have a question and it was very frustrating. When you call, you get an appointment desk for all the clinics and they are no help, I couldn't get an appointment right away or even close to right away. Because of my insurance I can only go to the clinic there. I had to really think about it and when I thought about having to get a colonoscopy or any other procedure done there really wouldn't be a way to get it done there. I asked if they were affiliated with any places in Queens he told me there use to be a office but they don't have it anymore.

I made another appointment with the GI doctor I saw 2 days ago for the first time and figured I would try to give it one more try but now I am starting to wonder if she has experience with crohn's. The reason why I say that is because once she saw all my papers that I brought and I told her how the last GI doctor wanted me on remicaid she started to say that they can't do remicaid there and i probably should go to a teaching hospital where they can handle my situation. I told her more then once that I didn't want to try the remicaid without trying any other options and she just seemed really funny about it. I probably gave her way to much information and should have let her run test and do everything because the whole purpose was to get a second opinion (plus I haven't had a colonoscopy in over 2 years or so). The last GI doctor i had was just trying to push the remicaid from the beginning and never did any test except for the small bowel series (above). I'm just so stressed and getting depressed again as if i just found out I had crohn's disease.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/28/2010 10:15 AM (GMT -7)   
The SBFT just says that you have Crohns in the most common area the TI and Cecum. Before my resections I took Pentasa, but since my resections I am now maintained solely on Asacol. But honestly, no one here can tell you which med will be best for you as we are not doctors. You really should be talking to your doctor about this. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Mrs_Mitchell
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 1/28/2010 9:44 PM (GMT -7)   
Thank You, well she gave me a perscription for both and I am to chicken to try pentasa right now so I will just stick with the asacol and take the dosage that she recommended. I was very curious of the results to my small bowel series being that my last GI doctor didn't want to take the time to explain it to me except to make me think I had the worse case of crohn's he has ever seen. Between having Crohn's disease and horrible anxiety/panic attacks I would love to know that with crohn's you can live a normal life. I would be so grateful if I can just feel normal again for enough time to be able to take my kids out and make it to their graduations. I haven't really had a good laugh in so long and I use to be such a happy person. I just feel my kids don't deserve a mother that can't leave the house to do anything fun with them, it's not fair, they didn't ask to be here. Thank God I have a counceling appointment tomorrow because I sure need it :-). Although i am going through all this I am still trying to get my degree so being that I can't go to college anymore I have the lovely option of online classes. I have been taking online classes at Berkeley college to get my bachlers in medical billing and coding. It is much harder then actually going to school but it's the only thing that keeps my mind off of the crohn's and anxiety when I'm logged into my classes. Last week I was on one of my classes and had to stop every 10 minutes to run to the bathroom, all i kept thinking was thank God for online classes :-)

Ditty
Regular Member


Date Joined Oct 2003
Total Posts : 24
   Posted 1/29/2010 7:28 AM (GMT -7)   
Hi Mrs. Mitchell,
I love that you are taking online classes. I am thinking of doing the same. I have a BA in History and Ed, but have lost interest in both.
Just a suggestion about your weight loss. Have you tried meal supplements? Ensure or carnation instant breakfast are both pretty good. Also, remember to drink. Having diarrhea all day dehydrates you. I have never been admitted to the hospital because my iron was low, but I have been in several times because of dehydration. Also, my doctor encourages me to take Imodium when I'm having excessive diarrhea....perhaps you could ask if that would be ok for you.
As far as the Asacol, I've been on it and off of it forever..... sometimes taking around 12 pills a day. I have not experienced side effects that I can remark on...however I find it annoying taking so many pills. Currently I'm on Humira... two shots every other week. I have noticed a remarkable improvement and have actually managed to stay out of the hospital for over two years.
Hope this helps :)

Mrs_Mitchell
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 1/29/2010 8:47 PM (GMT -7)   
Hi Ditty,
Yes, I had to figure out a way to get back in school and being that at this point in my life I can hardly leave the house because I need to be close to a bathroom, online classes was my only choice. I was attending college 2 years ago when all my systems started. I was going for nursing and I thought all the diarrhea was from the stress of having to have a 3.8 and higher GPA but unfortunatly that wasn't it :-(, it was crohn's disease. So now I had to change my major to Medical Billing and Coding and take online classes but it's better then not doing anything.
My primary care doctor has wrote me a prescription for Ensure Plus and sometimes I am able to drink it and sometimes not. I drink A LOT of gaterade and water to keep myself hydrated. My last GI doctor told me to take Imodium when I need it and even gave me a perscription for a anti-diarrhea medication but this new GI doctor I saw on Tuesday told me not to take Imodium but she was in such a rush she didn't explain why.
I have been taking Asacol on and off for 2 years but when the new doctor precribed pentasa I was nervous to take it. Being that she was rushing to go home or where ever she was going I don't even remember her asking me what medications, if any, I have taken. I am taking 3 pills 3 times a day right now and then i will work my way up to what she recommended (4 pills 3x's a day). i will start that on Sunday, I have never taken that much before and am a little nervous. My usual dosage has been 3 pills 3x's a day but I would always forget the afternoon dose so never took it 3 times a day. Now I make sure to set the alarm on my phone and write it down.

How is Humira? Is that the same as remicaid? Did you or do you have side effects from it? Does it help you from always having to use the bathroom? can you eat what ever you want or do you still need to watch what you eat? Is that the only medication you have to take now? Are you able to live a normal life again since taking it? How long did it take before feeling any results?

Sorry for so many questions............

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/30/2010 8:43 AM (GMT -7)   
Mrs. Mitchell I know you suffer with a/p also. But you are taking the mildest medications prescribed for Crohns, and there are little if any side effects with these meds. But you need to take what the doctors prescribe for it to do any benefit. So please put your fears aside for the betterment of your health. You are not going to feel better without taking your medications as prescribed. Also, maybe trying to take 1/2 Immodium will help enough to slow your bowels down a little. If you had a stricture or narrowing you shouldn't take Immodium, but doesn't sound like you do at this point. I hope you start feeling better soon. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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