Entocort to help "release" Video Capsule??? Or has anyone had removal surgery?

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CyCy
New Member


Date Joined Feb 2010
Total Posts : 5
   Posted 2/6/2010 8:35 PM (GMT -7)   
Hi, I apologize if there is another thread for this. I tried a search, but would really appreciate a specific answer.

Summary:
-Nov/Dec 2009: horrible abdominal pain, acid problems, felt like how I'd imagine an ulcer to feel like.
-December 2009: anemia...reorder bloodwork
-Later Dec: increased anemia...doctor is more worried than I am.
-Later Dec: Upper Endoscopy=clear, doctor prescribes Ferrex presc. iron
-January 2010: Colonoscopy= ok
-Later Jan: Video Capsule= upper intestinal ulcers...video does not show past this area. CT shows it.

I had resectional surgery in this area about 8 years ago. Doctor has put me on Entocort, hoping it will help "release" the capsule or else I will need surgery.

Question 1
I am on the fourth day of 9mg Entocort and I am feeling like crap. No sleep last night from abdominal pain, nausea, weakness. Abdominal pain today also. I have also been on the Ferrex (at opposite time of the day as my other prescriptions), but it has not seemed to affect me. Last night, I did take the Ferrex a while after eating...could this have caused me to feel bad? I have felt terrible, non-stop all of last night and off/on all of today. I am exhausted today and could barely do anything the two days before today. Should I call to tell my doctor about these side effects?
Has anyone felt this way from Iron or Entocort?

Question 2
Has anyone had the relief of passing the video capsule with the help of Entocort or another method?

Question 3
Should I be worried that the Entocort might cause a relapse, if I have felt fine before now (aside from ulcer/acid)? And is it logical/safe to be on Entocort and 6MP (Mercaptopurine)?

Question 4
Has anyone had removal surgery for a video capsule and how bad was it? How serious was it? How long did it take to recover?


Thank you so very much for even reading this. Thank you even more for replying!

I am 22, in my junior year of college as a transfer and I am more than frustrated and upset about this whole deal...I am looking to find a second opinion from another GI. Also, I am wondering why my doctor is so adamant about the Iron/Ferrex when it clearly states that you should consult your physician if you have intestinal inflammation or peptic ulcers. I do realize she is my physician, but I'm having trouble justifying her answer!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/7/2010 8:35 AM (GMT -7)   
Well if the Entocort does not reduce the swelling and inflammation enough for the capsule to pass, then they do a surgery to remove it. It could be the capsule is stuck in scar tissue though, so the surgery would be necessary either way. The surgery would probably end up being a resection. Yes Entocort and 6mp are safe to take together, many Crohnies take those two. Entocort will not cause a relapse in you, if anything it will help the inflammation. Iron is very hard on your stomach, so yes taking it without food could cause some issues i.e. constipation and stomach upset. Many do fine with oral Iron, but it can be hard on others system. Its really trial and error. You should talk to your doc about an iron infusion. I got IV Iron and within about 3 weeks my levels went up and I felt better.
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"*

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 2/7/2010 7:08 PM (GMT -7)   
What you are encountering is WHY I INSISTED that my gastro order and use the Agile Patency Capsule before I would consent to the Piill Camera Endoscopy even tho I wanted very badly to see just what was going on in my small intestine.

It is RIDICULOUS and bordering on malpractice in my opinion for a doctor to order a PCE for anyone w/a prior small intestine resection, ESPECIALLY one having active symptoms, w/o first ordering the APC.

The ONLY reason, and an unjustified reason in my opinion, would be IF the doctor was convinced you should have a resection and you were refusing the resection. If he ordered the PCE and it got stuck the resection and removal of the PCE would be justified in his opinion - but NOT mine.

I'm sorry. That is certainly no consolation for you. I wish you well.
My computer says I need to upgrade my brain to be compatible with its new software.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/7/2010 9:18 PM (GMT -7)   
CyCy, like ChronieToo, I'm outraged. There have been posts from others, too, about these camera pills getting stuck - perhaps you will be hearing from one of them, soon.
 
Entocort is often prescribed along with 6mp, so taking the two together isn't unusual. 
 
If Entocort doesn't do the trick, then perhaps a short course of prednisone - or something like Solumedrol via IV - might help.
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/8/2010 9:07 AM (GMT -7)   
bump
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 


CyCy
New Member


Date Joined Feb 2010
Total Posts : 5
   Posted 2/18/2010 6:49 AM (GMT -7)   
OK GOOD NEWS!!!

It has passed. I am so relieved.

My doctor was putting me on Entocort for a month, but after a few days I was dying from skin problems, trouble catching my breath, feeling like my insides were tearing up (ULCERS=more than aggravated!), fatigue, foul mood, etc...

It was over the weekend, so of course I couldn't call my doctor. I was also having SEVERE trust issues. I have this with any doctor. So I took only a third of the dosage.

I also started to have two symptoms I hadn't had in a few weeks: I was finally feeling hungry (not nauseas and full, like something was stuck), and I no longer had an awful drain-draining feeling (like when the water finally gets through and it makes a loud suction, I was convinced this happened as food went past the stuck-capsule).

So I was MORE than convinced it had passed! I called my doctor that Monday and she ordered a KUB xray for the next weekend (I'm in college, so I had to wait) and she told me to quit taking the Entocort.

I received the call yesterday afternoon: Capsule was gone!

I have no idea what I want to do about keeping or changing my doctor, but as of now, that's the last thing on my mind. I do not trust doctors, so it's difficult for me to say yes or no to changing one.

I hope everyone's week only gets better!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/18/2010 7:27 AM (GMT -7)   
Glad to hear you passed the capsule and avoided surgery. Good luck to you!
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"*

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/18/2010 3:57 PM (GMT -7)   
Whew! Congratulations! No more camera pills for you!
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 


CyCy
New Member


Date Joined Feb 2010
Total Posts : 5
   Posted 9/4/2010 11:58 AM (GMT -7)   
Is it welcome to rant on here??? ;) I could use an ear or two.

So, this same doctor from my first post: I walked out on my last appointment. I am changing doctors.

A few weeks after the camera pill passed, my ulcer-pain went away also. I live two hours away (at college) from this doctor. I've had this doctor for less than a year after finally changing from a pediatric GI.

From the first time we met, I did not understand her "professional" personality and it seemed as if from the very start, she was looking for anything that could point me to surgery. (Last fall I was feeling fine Crohn's-wise, but had had problems with Acid Reflux, which doctor said it would be fine to take Prilosec OTC daily, every-day)

I had normal bloodwork done at the first appointment, but she called me in for a re-do: my Iron was "low". I have had an ice-chewing problem, but other than that, I had great energy!

After the second bloodwork, doctor said iron was "even lower" than about 2 weeks before. She wanted an endoscopy and colonscopy to "check up on the Crohns". Immediately at this time, she prescribed Ferrex (presc. Iron) and each time I tried to take it (am/pm, with food/without, etc) it felt like straightblades and nails going through my intestines.
After about a week of Ferrex, I could no longer take it and told doctor this when I showed up to colonscopy and at the endoscopy. She told me "it is VERY important that you take it", but didn't listen to how the pain kept me awake all night, whenever I took the Ferrex and I'd had the same problem with simple iron before that.

(Everything else is described in my first post, in this thread.)

After coming home from first session of summer at college, I am having severe (what I differ from Crohn's pain) ULCER pain. I was not ready to have an appointment with my doctor, because 1) I had felt somehow, she would blame me and 2) I did not trust her any longer. I looked up a diet online for "duodenal ulcers", which is specifically what doctor had told me was found with whichever one of the tests. Soluble fiber (whole grain) suddenly felt like the best thing in the world to eat...I felt great after the third day, which is when I finally went to an appointment to see this doctor.

In the waiting room, I was not livid with anger (as I had been the night before) but instead, I was thinking: what could she possibly do that would change my mind about leaving her? (Not to mention, she had just changed from a group practice and now has her own practice!)

I pre-pay my bill, the nurse brings me in (same nurse from everything that happened before), I try to explain to the nurse how much pain I've been in through the past week (felt FINE since the camera pill stress went away, but bad again, after about 5 months of GREAT), I explained how the ulcer diet was helping greatly and I had no pain but thought there should be something to help treat the duodenal ulcers. (Also, I am a very high-pain-tolerance person, but I know this was no blockage/Crohn's pain, but the same pain I had months earlier (with loads of stress) and thought: if I had an ulcer, this is what I would expect it to feel like). The nurse began to tell me about her vacation and before I was finished, she left and told me the doctor would be right in. (Also, I saw the doctor in the hall and said 'hi' but she looked straight through me and went into an exam room, our faces were 2 feet apart!)

The doctor has me wait 25 minutes, even though I knew for a fact that her only other appointment had just left.

Doctor comes in, smiling, saying "Where is that SMILE of yours?!" I force a smile. I explain everything to her. She only looks at my papers. I finally bring up the fact that I need a form signed for school about my health condition, explaining how a serious change in my chronic condition affected my academic performance in the beginning of the spring semester. Doctor finally looks at me, saying, "Well how can I believe that, if you never called or came here?"

Ummmm, I DID call. I called several times, especially during the whole camera-pill issue. I felt like I was dying somedays. Doctor snorts a laugh, "Well, then WHO did you speak to?"
Your NURSE. JANET.
"Well, you certainly didn't make an appointment and come here to see us? I have a problem signing a paper that says you were 'sick' when I don't have any proof?!"
I was extremely EXTREMELY pissed at this point, saying "Forget the paper. I didn't come HERE, because I was in school TWO HOURS AWAY. I was all I could do everyday to drag myself to class! And before all of the problems with the camera pill, I felt fine! I TRUSTED you to believe the camera pill would go through, because you KNEW I had had surgery before."
"I'm sorry you feel that way, but I can't know about how you were unless you had come here."

I explain how I just want to know how to treat the ulcers, explaining the diet (what I had survived on the past 3 days, enough to have a normal BM again)
She talks to me as if I'm slow, "Those diets are for peptic ulcers, honey, which are in the stomach, but YOURS are in-"
"Yes, I know, DUODENAL ULCERS, which is what I looked up online and the type of diet it suggested and it has made me feel better."
Doctor shrugs, "Well, what do you want me to do then, sweety?"
"I've heard that duodenal ulcers can be treated through antibiotics..."
Doctor smiles, "How do you know you have ulcers?"
"The pain I feel is not like Crohn's, it is a burning/stinging feeling here"
"You can't know what pain you have."
"Well, you had told me from the tests that I had ulcers." I'm angry-crying and glaring at her or the wall, well before this point.
Doctor: "Why are you so angry with me?"
"I don't trust you."
She leans forward, "I understand what how you're feeling, baby, WELL, not exactly, because I haven't been through it..."
I roll my eyes.
Doctor talks to me again, as if I'm even more stupid, "The tests we did showed A MESS down there, where you had surgery. And now you've felt bad for 6 months (NOT what I said, I said 6 months ago) and we tried the Entocort, but you mother told us it made you feel 'crazy'?" (This is NOT what I or my mother EVER said.)
"I think it's time for surgery."
***?! I said at least 5 times that I could not understand where this was coming from.
I explain (at least three times) how I was feeling fine after the Entocort stopped, but started having ulcer pain in the past 2 weeks. I had been feeling fine for 6 months. She and I argue back and forth (same points: she wants surgery, I want to know *** is going on...she wants to cut me open, I want to treat the ulcers I was told were found...she keeps repeating I have "a MESS" inside me) until I pick up my things and say "Well, I don't know what else to say, but thank you...have a nice day."

Now, weeks later, I have an appointment (Sep. 28) with a new GI. My mom knows someone who changed from my old doctor to this new one, for the very reason of pushing surgery. This person has also learned about a few other people who changed from my old doctor.

As my parents and I read over the records that this doctor made, we realize that this doctor was more crazy and un-trustworthy than I even realized. My iron levels were on the "low" side, but not enough to worry, according to Quest Diagnostics. (This was the reason all of this "testing" started, in order to find if Crohn's was coming back...she wanted to do surgery.) Her notes actually included the words "MESS" and "CRAZY", while our last conversation was noted as "Patient became very emotional when I explained that a medical condition was no excuse for poor academic performance." And as for the many times I explained that the Ferrex or other iron gave me severe pain that kept me from sleeping, she wrote each time: "Patient non-compliant with treatment."

On another note, the Ferrex said to not take it if a patient had ulcers. I believe I remember that the Entocort may have also stated this...maybe I'm wrong.

This doctor said that Prilosec does not cause iron-deficiency, but when I looked this up again, I learned that it does...along with the 6MP I regularly take.

Lastly, my brother-in-law has recently been treated for an H. Pylori ulcer (can be caused simply by improperly cooked/refrigerated foods, while our whole family has holiday dinners together at someone's house who has a very loose idea of what will be "okay" to not keep cold, etc.)
My doctor said she tested me for H.Pylori (I specifically requested, with explanation) during my colonoscopy, which she said came out "negative". I would like my new GI to test me again, through bloodwork.

Thank you to whoever reads this! I hope you all are doing well. Please share your own rants, etc. It is sooo good to get things like this off your chest.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/4/2010 4:05 PM (GMT -7)   
Oh my... CyCy... I am SO SO SO sorry you had to go through this! I read the entire post in horrified fascination. Nobody should *ever* be treated that way by anyone, let alone their doctor! I am really glad to know that you already have plans to meet with new GI! When she writes things like "mess" and then says it's no excuse for poor academic performance... Arg!!!! You deserved the support that a doctor should be able to give you. Twice I actually had my GI sign a letter so that I could get refunded for a ski pass that I was unable to use. Neither time did he flinch at the idea. When we are flaring, it's very difficult to get moving and be productive. You need a GI with *good* bedside manner.

I left a doctor I had because anytime I'd get tears in my eyes (not like break-down or sobbing!) he would just say something like, "Clearly you're not handling this well. You should just get surgery and move on with your life." Once he said, "I have a 17-yr-old patient who handles this better than you do!" ARG! I just had watery eyes! I was not even crying! All because I was scared and he made me feel worse. So, I know how you feel.

Just try to shake it off and do not let her bring you down! You are obviously a strong person, so believe in yourself and consider her a nut-job. Thank goodness you have the support from your family! So nice to have people in your court!

hugs!! Hang in there!
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/4/2010 5:52 PM (GMT -7)   
So glad you ditched the doc. Hope you find someone sane, this time!

CyCy
New Member


Date Joined Feb 2010
Total Posts : 5
   Posted 9/4/2010 8:03 PM (GMT -7)   
Thank you for the support. It's been a bad day and I am always hoping for reassurance whenever I'm doubting myself. :/

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 9/4/2010 11:34 PM (GMT -7)   
Don't doubt yourself CY Squared, I'm impressed with the thoroughness of your post (especially since it would've taken my an hour to type it) which reveals a Dr. who has made up her mind ,mixed you up with someone else and her mother, is trying to cover her ass legally and is not listening at all to her patient. Probably due to the fact she'll make alot of money from your surgury. My opinion is she's probably a lousy surgeon as well. You were smart to look for another Dr. and should continue until you get one who truely listens to you. Best of luck.
Male, 55 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 May, 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. In the past, 5-asa Salofalk, Asacol, Entocort,  Imuran and Prednisone.
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