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Post by maggiesara on Oct 30, 2013 17:47:27 GMT -5
Ok, I'm starting to be really freaked out. the nausea and the diarrhea just aren't going away. The nausea -- like the poor -- is always with me, to varying degrees. Much of the time I feel just one step short of puking. I don't mean after I eat or whatever, I mean ALL THE TIME. The other day, when I was hoping to get together with some folks from this board, I was so sick I couldn't even think about putting clothes on; I spent the entire day and evening in bed. Two months after surgery, and I am still effectively housebound, not feeling remotely well enough to see anyone.
Both my GP -- who is a gastroenterologist -- and my surgeon are recommending Creon, and I am balking. I feel like, wait, I've gone through this incredible shit that I am still going through, and now you want me to halt the weight loss, which is the only good thing that's going on? I'm really frightened, and I'm starting to have the This Is What The Rest of Your Life is Going to Be terrors that I had a month ago, that I'm going to spend the rest of my life constantly on the verge of throwing up. I'm at my wits' end.
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Post by Deleted on Oct 30, 2013 17:51:02 GMT -5
Honey, take the Creon. It will NOT halt your weight loss. Yeah, it might slow down a bit, but you need to quit shitting your life away. The way you are losing weight is NOT a good thing happening in your life. Get your gut under control and then you can move forward from there.
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Post by newanatomy on Oct 30, 2013 18:01:20 GMT -5
I am so very sorry you are going through this. I would be terrified too. Hell, I am terrified this will happen to me.
Do what your surgeon recommends. If it helps you to feel better, when you come off, the weight will too.
Feel better soon!! Hugs!!
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Post by larra on Oct 30, 2013 18:06:10 GMT -5
I'm so sorry you aren't feeling better!
I must admit that I don't understand how Creon is going to fix nausea, but at this point maybe it's worth a try. It would be a temporary measure to get you over the hump, and if it doesn't work, the effects will leave you as soon as you stop taking it. So no risk to you (other than slowing your weight loss).
Larra
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Post by newyorkbitch on Oct 30, 2013 20:46:02 GMT -5
Maggie have you thought about having a consult at this point with Pomp? It might be a good idea just to get another opinion and surgeon's set of eyes on your surgical report, and everything else. And your GI is at Cornell.....? Just a thought.
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Post by KathyF on Oct 30, 2013 20:58:49 GMT -5
What are you taking for the nausea?
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Post by maggiesara on Oct 30, 2013 21:01:38 GMT -5
In all honesty, NYB, I'd be more inclined to seek a consultation with one of the surgeons mentioned on this board who is actively involved in DS, which Pomp is not. I know you're a fan of his, but he's doing something like one or two of these surgeries a year, at this point.
Alright, how do I take the Creon? With food?
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Post by newyorkbitch on Oct 30, 2013 21:13:04 GMT -5
But they have so much data...Pomp has been involved in DS's for over 15 years at this point. And he's smart. The nutritionist in that program has been doing DS nutrition for almost 15 years - she and Pomp were both on the original DS team at Mount Sinai (Herron and Inabnet were too)...if I were you, I'd see somebody who isn't only a DS surgeon...you might need someone who has experience with DS gone wrong too...
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Post by fattynnc on Oct 30, 2013 22:05:19 GMT -5
Ask to try colestipol (the brand name is colestid). I take 1 gm pill twice per day. It made most of my gastro problems go away. I was having trouble from lack of gallbladder, not really my DS. It doesn't work for everyone, but it doesn't hurt to try it.
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Post by maggiesara on Oct 30, 2013 22:13:38 GMT -5
I'm taking three twice a day
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Post by brooklyngirl on Oct 30, 2013 23:08:12 GMT -5
Jeez Maggie! I was wondering what happened since we hadn't seen anything from you for a while. Sorry things suck so much for you now. I hope you get a second opinion and things get sorted out :/
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Post by PrettyGirlBounce on Oct 31, 2013 3:40:09 GMT -5
Sorry honey...so sorry!!
Have they tried Donnatal for the diarrhea and nausea? Or Hyosciamine? These helped me tremendously with both issues.
I totally understand how you feel. During my longest hospital stay (close to 3 months) my chronic diarrhea was catastrophic and it left EVERY doctor that tried to treat me flat out stumped. Ultimately, the only thing that helped to make it manageable was tinctures of 100% pure liquid Opium. No shit. It was NUTS. None of any of the nurses had ever used it to medicate their patients before. It always was a big production and had to be ordered way in advance. But it worked and it worked fast.
I am thankful to never have had the same issue post-op revision thus far. Having said that and the point of this story being, if I were you I would try anything the docs suggest at this point. I did when I felt desperate to fix the problem even though I was HIGHLY reluctant and resistant. Finally, I caved. I couldn't go on like that any longer. Turns out, it worked.
I hope you find some relief soon. You sure have been through a lot. Hugs to you!!
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Post by Deleted on Oct 31, 2013 6:47:13 GMT -5
Generally you take Creon every time you eat anything.
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Post by Girlrocker on Oct 31, 2013 8:46:36 GMT -5
{{{{{Maggie}}}} I was just thinking of you too. I am so sorry this recovery has been this rough on you, it sucks  Revisions are very difficult and at just 8 weeks out, you're still in the recovery phase, in virgin surgeries the 8-12 week period can be hard. I'm not familiar with Creon, but learning along with you here. It sounds like it's worth a try. Having this much diahrrea not a good thing. I also have learned a lot about doctors from our folks here and think NYB has a good point too about getting a second opionion and why Pomp would be a good choice. And hell you can get a third one too if needed - I did when I was going through my revision decision process. I understand the fear, I remember well how I felt when I was going through my numerous issues after my RNY, and the anxiety I felt about my revision. I didn't have complications with my revision, but it was a slow road for me the first 12 weeks, I couldn't eat much of anything, fluids were challenging because things tasted weird, I was in pain and was just physically wiped out. What I want to believe is this is a recovery hump to get over, yours might be longer, rougher, but you will turn a corner. Keep coming here for moral support so you don't feel isolated and keep freaking yourself out; and give a try to some of the above, it can only help, not hurt you hon. In the meantime, how's about a laugh or ten, ha ve you seen this video yet, "Cats Stealing Dog Beds" Priceless joy and hilarity 
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Post by tina9999 on Oct 31, 2013 9:51:52 GMT -5
I'm so sorry this recovery is so difficult on you. I don't know anything about Creon but I would try it at this point for hopefully some relief. Your poor bumhole must be in agony & being housebound is I'm sure not helping your psychological state. I hope you get to feeling better soon. I've got my fingers crossed for you & I've said a prayer for you just now. |
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Post by MsVee on Oct 31, 2013 10:46:35 GMT -5
My heart goes out to you. We all approach these surgeries praying for better health and it is frustrating and challenging when we have to deal with complications. I pray you find some relief.
MsVee
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Post by hilary1617 on Oct 31, 2013 10:59:50 GMT -5
I take 3 Creon with every meal or snack. It is very helpful and I actually still have to try very hard to keep weight on - I don't want to lose anymore. Feel free to PM me with any questions.
TMI alert, but I also take 3 Welchol twice daily with meals to help with bile salt diarrhea (http://en.wikipedia.org/wiki/Bile_acid_malabsorption). This might be another one to consider.
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Post by chicarita on Oct 31, 2013 19:31:42 GMT -5
Paregoric!! They used to actually sell that over the counter when I was little. It was the only thing that helped with my stomach issues as a kid - my mother used to give it to me all the time. When I grew up and found out what it was I almost died! Can't believe I wasn't an addict! Although you may have received Laudanum which is stronger. If it worked that fast you probably did. Glad it helped though!
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Post by meq815 on Oct 31, 2013 20:52:45 GMT -5
I grew up on Paregoric, as well! I can still taste it.... It was OTC, but you had to sign for it. Worked wonders for cramps. Or at least you didn't care lol.
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Post by Deleted on Oct 31, 2013 22:00:36 GMT -5
Maggie I don't have anything to add but to say I am so sorry you are still having all these issues. I do believe things work out in the end and that this will pass, hopefully much sooner than later.
Best of luck to you for a breakthrough, and soon!
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Post by deedee484 on Nov 2, 2013 10:03:59 GMT -5
Maggie...hope you are feeling better today!!! |
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Post by Deleted on Nov 2, 2013 10:14:08 GMT -5
How are you feeling Maggie? I hope you are doig better. Check in and let us know.
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Post by PrettyGirlBounce on Nov 2, 2013 17:58:13 GMT -5
I grew up on Paregoric, as well! I can still taste it.... It was OTC, but you had to sign for it. Worked wonders for cramps. Or at least you didn't care lol. Um, yeah Mary Ellen that pretty much sums it up!! Hahaa! I was hallucinating BADLY on that shit. Well it was also mixed with the other 12 meds they had me taking. My DH said that I would talk about being at the Eiffel Tower...or making sure our horses didn't get loose (don't have any nor do we live anywhere near any lol). But holy wow. I can't believe they used to sell it OTC! I mean this stuff was powerful and I definitely needed to be monitored at all times. |
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Revisions are very difficult and at just 8 weeks out, you're still in the recovery phase, in virgin surgeries the 8-12 week period can be hard. I'm not familiar with Creon, but learning along with you here. It sounds like it's worth a try. Having this much diahrrea not a good thing. I also have learned a lot about doctors from our folks here and think NYB has a good point too about getting a second opionion and why Pomp would be a good choice. And hell you can get a third one too if needed - I did when I was going through my revision decision process. 
