Newly diagnosed crohn's, help....also have gastric bypass....urgent

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zoey101
New Member


Date Joined Nov 2007
Total Posts : 3
   Posted 11/4/2007 8:13 AM (GMT -7)   
Hi all, I am a very complicated case even for my GI doctor. Had gastric bypass in april 2007, started with chronic diarrhea in july, took immodium and went away then returned, continued on this cycle until I had a major accident(BM)in the department store in front of everyone. Saw my primary care who sent me to the GI, colonoscopy/endoscop/capsule endoscopy done. 2 polylps, negative, but ulcerations on my small intestines positve with biopsy. On the capsule endoscopy bleeding in my small intestines. Promethius lab test sent out and negative. Started on lialda, took for 3 days worese diarrhea, then prednisone....headaches, eyes burning, insomnia...called the GI again noe on encort 3mg in the am three pills and changed me to pentasa 2 pills three times a day....pentasa better but I cannot keep up with all the pills. My question and my GI are concerned since my anatomy is not the same as a normal person due to the gastric bypass in what part of the digestive tract dose the medication digest? I would love to continue Lialda but I think it is not absorbing in the right place. Help!!!I am so frustrated, I don't know anything about this disease, diet or alternative medicine. I need a hx, but gastric bypass doesn't help. Thanks for any and all replies.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/4/2007 11:19 AM (GMT -7)   
Hi Zoey Welcome to HW we are glad to have you and there is lots of help here. I follow mostly low roughage diet no seeds, nuts ,corn popcorn and soft cooked veggies and soft fruit like apple sauce and banana. So sorry you are having problems but sometimes it takes time for our GI's to get our meds worked out .I had lots of insominia on pred. too and it gets better after being weaned down a little but it is effective on the bowels. Not sure where Liada breaks down but I am sure others will be along to help .Hang in there it does take some time to find stuff out and we are here to help you we"re a very caring bunch of people so your not alone and that was the first thing that helped me with this disease is having others to help. lol gail

zoey101
New Member


Date Joined Nov 2007
Total Posts : 3
   Posted 11/4/2007 11:37 AM (GMT -7)   
Thank you so much, with this disease you really feel alone and embarrassed....alway needing to know where the bathroom is just in case. I was having bloody diarrhea, but the blood has stopped, now just diarrhea...and urgency to go even if only mucus comes out. I am tolerating the encort much better than the prednisone, it'a the mesalamine which is giving us the problem. Once daily dosage compared to three times a day, there is a big difference. I just need to know what works better for me. Lialda says it breaks down in the large intestine but my ulcers are in the small intestine, does that make a difference. At the time of the gastric bypass I had no idea I had crohn's, I did lose my daughter 2 years ago in an accident so my life has been very stressful, did that cause all of this, who knows.I have lost 60lbs, but alot is the frequent diarrhea I had since july, and I am actually afriad to eat now because it goes right through me. I do love my morning coffee w/ splenda, it that a no-no?Thanks and all responses welcome, Thanks again....

HuskerFan
Regular Member


Date Joined May 2007
Total Posts : 79
   Posted 11/4/2007 2:09 PM (GMT -7)   
Zoey..you sure have been through alot and I am soo sorry.

It is possible that stress could have brought on the symptoms of Crohns....

Is the GI doc you are seeing the one that did your Gastric Bypass? If not...I would think I would talk to the guy that did your Gastric Bypass...as he is a GI doc too, Correct? Because with your surgery I would think it would be very important that you get all of your nutrients/vitamins....

Gosh...good luck....And let us know how it goes for you...and what you end up finding out.....
Mis-diagnosed for two years--doctors thought I had RA!

Fistua surgeries in Sept 2006,Dec 2006 and Aug 2007
Centon placed in fistula track during last surgery..permanent open wound
Finally diagnosed w/CD & Fistulizing Disease in Jan 2007
Currently taking Remicade since May 2007


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 11/4/2007 3:37 PM (GMT -7)   

Crohn's is a very individual disease.  Coffee and artificial sweeteners are both not recommended for us, as they can both increase d, but some can get away with it.  I would try cutting it out for a couple of days and see what happens.  A food journal is very helpful.  It can help you figure out which foods are triggers and which are your safe foods.

I know what you mean about keeping up with all the pills.  I take pills four times a day.  To make my life easier I just take them at breakfast, lunch, dinner, and bedtime.  And I have a list that I keep by my pills with what I'm supposed to take each time.  I pretty much know which ones I'm supposed to take when now, but it makes me feel more secure to have it right there.

I know it's embarrassing, but please know that we've all been there with the accidents (see the "never trust a fart" thread).  I leak a little bit sometimes, and I've found that wearing a pantyliner all the time saves my underwear.

You mentioned urgency issues.  Is it like dry heaves at the other end?  If so, a sitz bath might help.  Soaking in warm water- with or without epsom salt- can ease irritation and can help relax muscles that might be spasming.

I briefly considered gastric bypass about a year before I was diagnosed, and have been very grateful that I didn't go for it.  I can't imagine what kind of complications it must bring to Crohn's.  Good luck to you.


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 11/5/2007 2:54 PM (GMT -7)   
Zoey,
I know splenda is a good sugar free alternative for some. I know, for me,that it makes the D sooooo bad, along with coffee (any type decaf, etc.) I tried the sugar-free candies and gum, but it wasn't worth it. heck a lot of the sugar free soft drinks have this. So I figure, water for most, and If I really want a soda, I can live with the few extra calories, but must limit my intake.
My mom has had gastric bypass and she says she cannot tolerate the sugars, nor much in the way of carbs. Yogurt might help (high in protein and has live cultures). How is your diet otherwise?
Here's hoping all the best....

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 11/5/2007 3:54 PM (GMT -7)   
Welcome to Healing Well! Question for you - did you have a Roux-en-Y type gastric bypass? That is the most commonly performed type of weight loss surgery. In that surgery the top of the stomach is stapled creating a small pouch and the small intestine is attached to that small pounch. Food enters directly into the second section of your small intestine, the jejunum.

As far as where and how various meds work, from the prescribing info for Liada:
The tablet is coated with a gastro-resistant pH dependent polymer film, which breaks down at or above pH 7, normally in the terminal ileum where mesalamine then begins to be released from the tablet core. So it is designed to release in the terminal ileum which is below your jejunum. The question then becomes, is the pH in your ileum altered by the bypass? I think perhaps the bypass surgeon might know the answer to this since the GI doesn't.

Pentasa is designed to release throughout the intestinal tract. I could not find specifics of release parameters. If the Pentasa is working for you but you are having trouble remembering to take the pills, perhaps a watch with an alarm. Or what about a small divided daily pill container that you keep with you? Those are very inexpensive at the drugstore.

There used to be a good article about the role of diet in Crohn's disease on the Internet. The page is no longer available but I have a copy of it. If you would like me to email it to you, please contact me. My email addy is available to the left under my name in the blue envelope icon.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


zoey101
New Member


Date Joined Nov 2007
Total Posts : 3
   Posted 11/5/2007 6:24 PM (GMT -7)   
That is the surgery I had, I have not yet talked to my surgeon who did the bypaas, he is not a GI , just vascular surgery. I did read that the pentasa is broken down in the small intestines and it is granules with a thin plastic coating, I just want to know what will work best for me. Yes I would like the article on the dietary changes, jarcutt2@aol.com. Thanks.

stcelit
New Member


Date Joined Nov 2008
Total Posts : 1
   Posted 11/5/2008 10:16 PM (GMT -7)   
Zoey,
I too had gastric bypass several years ago. I am in the process of seeing a specialist. I had a colonoscopy (incomplete due to colon spasm) followed by a barium enema and an EGD 2 yrs ago. The GI doc did not see any signs of CD. However, my Dad died at 55 from colon cancer that metastasized just about everywhere that started with CD. I have had problems with tongue lesions and nasal lesions for several years now. Now I think I have a nasal septal fistula because it whistles sometimes when I inhale. I started having upper abdominal pain and that's why I had the EGD. They determined that it must be scar tissue from the gastric bypass. (CT of abdomen & pelvis ok, too). The colonoscopy was scheduled due to iron def. anemia. They decided it was due to the gastric bypass. Now I have started having back & neck pain along with pain in my fet and hands especially in the am. My PCP is sending me to a rheumatologist for genetic testing to see if I carry the same gene that my dad had. It could be ankolosing spondolitis which is also related to CD. I said all of that to give you and anyone else out there a little history but I would like to know what meds have worked for you. I am a nurse and I am pretty sure this is going to turn out to be CD but like you, I wonder how my body will absorb the meds. For now I just take Lortab 7.5/5 for the pain and Xanax as needed for the anxiety. I remember the horror of my dad's flares and surgeries. I am sure treatment has come a long way since then. He died 10 yrs ago. When he started on Pentasa, we had to order it from Canada because it was not FDA approved yet. That's how long it has been but still I remember being one scared little girl most of my childhood. Any advice or reassurance would be appreciated. Thanks.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/6/2008 11:05 AM (GMT -7)   
Uh, zoey - you are going to get spam..... Posting you email address in the forum will result in spam. There are programs that look for such things automatically and lists from those programs are sold to spammers. You should have gone to Ides' profile (click on the name beside the post) and collected her email address from there and emailed your address directly to her.

Michelle3176
New Member


Date Joined Apr 2012
Total Posts : 1
   Posted 4/15/2012 4:23 PM (GMT -7)   
Hi Zoey,

I too am in the same exact boat with the Gastric Bypass; I haven't been diagnosed with CD; I have had 2 Upper Endoscopy's; Ultrasound; Nuclear Scan to see how I am digesting food; and now after my stool sample had an enormous amount of White cells they say either Colitis or Crohn's but Colitis was ruled out with the Colonoscopy; I had 1 polyp that biopsied which was in the sygmoid colon. Mostly since my Gall bladder was removed in Dec 2010 I have had chronic diarrhea I work 10 hr days and I take about 6 immodium a day to stop myself from going and then I back off on the weekends so I can try to control when I go; Ive been doing this for about 2 yrs now and it works but I have no idea how badly I am torturing my body. I work as a Probation Officer; I have about 260 clients to monitor and I have 3 kids and a husband with Combat PTSD; my son has Aspergers and when the endoscopy found 5 ulcers in the new stomach I was more than surprised but in retrospect I should have seen that coming. Just recently with all the GI issues I finally got in to see a Orthopedic Specialist for my shoulder, which turned out to be C3-7 in my neck, so I need an MRI and they put me on prednisone for the severe inflammation in my neck, then they will start shots of cortisone and hope that it will be enough to help the degeneration of the spine but if the MRI shows bulging discs he thinks I need surgery.

I have severe Iron def. anemia they want to put me on Iron bags but I bleed so much, my blood doesn't clot like it should anymore and I am fatigued all the time. I fight everyday to continue working and pretty much take it one day at a time because i never know when or where i will collapse or get so weak I can't function. I haven't been diagnosed but I seem to have all the symptoms and my GI doc doesn't know what to do because of the Gastric complicating everything, even the colonoscopy turned into a nightmare because I couldn't stop with the diarrhea after it started, it sure would be nice if a Gastric doctor would right a few books now that so many of us are dealing with all these issues, they were so quick to recommend my surgery 8 yrs ago and now all the specialists and doctors can't believe I am still alive, they actually say Oh My Gastric Bypass you had the Y, dear lord do you know how many people have died from that surgery, thanks for the help!

I understand completely what you are talking about and I wanted to say I know I didn't have CD prior to the surgery and I doubt you did either I dont know exactly what caused my symptoms but once my Gall Bladder was removed things got worse but before hand I couldn't hold anything down. I now take Carafate to coat my stomach for the ulcers I have been on it 10 wks for the 5 ulcers and I can finally hold solid food down again with it; but I also take Prednisone because suddenly they think I have acid reflux and I am on prednisone but that is for the neck and I can't sleep, and mostly feel like I want to scream at people on the higher dosage lol plus I am always starving but can't eat with the ulcers, so at the moment things are a total mess.

I guess mostly its nice to know there are others out there that somewhat understand!

Michelle
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