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Living with Crohns
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SweetMichelle45 posted:
HI,

I have been living with Crohn's for at least 4 years! They actually think that I had it back in 1989 when I lost over 30 pints of blood and actually died twice. A third of my Large Intestine was removed, but it turned out not to be the cause of the bleeding. They never did figure it out. They even sent me to Mayo Clinic, they were also perplexed! To save my life at the time, they gave me a colostomy and iliostomy, then a complete reversal 9 months later.

My doctor now, has tried so many different medications, he is running out of options. I either have an allergic reaction to them or they simply don't work. I am interested in what has worked for others out there for Crohn's. Two of the biologics they have tried caused an allergic reaction. This last time he put me on Opium Titrate ! Terrible stuff. I ended up in the hospital with almost a bowel obstruction. I looked 9 months pregnant that day. I am not kidding.

Now they are trying a new diet, which leaves me with little that I can eat. Since leaving the hospital, less than a month ago, I have lost at least 17lbs. Does anyone have any advice or information about themselves they would like to share? I would greatly appreciate and love to hear about your own situation with living with Crohn's!

Thank you,
Sweetmichelle45
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jaimem92 responded:
I'm very fortunate to have the Crohn's that I do- I rarely have problems and can still live a very normal life.. So I don't have any advice for you unfortunately, but know that ppl are praying and thinking of you and I hope the drs can find something that will work for you
 
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SweetMichelle45 replied to jaimem92's response:
Hi Jaimem92,

I appreciate your response and support. I have found there are very few people out there that we associate with on a daily basis, who understand all that one goes thru when they have any kind of digestive problem.

It was wonderful to find this site and find others who understand and have the same concerns or maybe an idea that hasn't been tried yet. I appreciate any and all prayers from those out there who do understand.

Even when I try to get my family or boyfried to understand, I find I run into difficulties. Does anyone else experience the same issues.

Thank you again, your support means more than I can put into words.
 
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jaimem92 replied to SweetMichelle45's response:
Significant others don't ever completely understand I don't think. My husband has gotten a lot better but he is still doing pretty good I guess.
 
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hannahleigh89 replied to SweetMichelle45's response:
I've been really lucky for the most part when it comes to family and friends understanding what I'm going through. Although Jaime is right and nobody really completely understands, this isn't my family's first dealings with Crohn's or UC. My father had UC and nearly died from it close to 20 years ago. He knows exactly what I deal with and what I'm going through, and my mother, having been married to him for many years, also has a better understanding. My extended family, cousins and such, really have no idea because my father isn't much of a talker; especially not about his problems. But they are generally understanding people, for the most part, and I try to explain to them (in a very basic sense) what I deal with and go through so that they have a better understanding.

As far as my boyfriend goes, he's had no experience with sick people at all. He's never been in the hospital, never had an IV, none of that. But his grandmother has Crohn's Disease, so he knew a little bit about it before we began dating. He and I have also been friends for years before I was diagnosed, so he heard a lot of my stories and things before we even became romantically involved. So no, he doesn't come see me in the hospital (I was four hours away, to be fair). No, he didn't want to see my incisions or my ostomy. And yes, it freaks him out when I have to do my shots every week. But he is extremely supportive of me and all of my problems, so I try to be understanding of the fact that it's all really weird for him. If we do decide to get married, I'm sure it's something he'll eventually get more and more used to. Especially since I'm going into medicine. But if not, hey. He didn't complain when my ostomy leaked and I had to make him get up so I could change the sheets. He didn't think I was gross when I slept on a pad in case I had an accident after my reconnection surgery. Really, what more can you ask for?

I do know, from experience, that people really don't understand what you're going through. Some of them try, and some of them really couldn't care less. Some of them (again from experience) think that you're faking it, and they're jealous for the attention that you get. You just have to find a small support group, like ours here for example, and take what you can get.
 
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Magsjeanea replied to SweetMichelle45's response:
Some people understand, some don't. Like Hannah said we really don't need everyone to understand just the ones that count. I am one of the luckiest people in the world. My husband bends over backwards to try and make me comfortable. He has seen me doubled over in pain and vomiting for one and a half hours driving to the hospital for one of my incomplete bowel obstructions during my flares. I really don't know what I would do without him or the people in the forum who have been supportive. Now I am the one who has to be supportive for him. He was diagnosed with severe heart disease from diabetes and there is nothing they can do about it. He has just turned 60. He has a 100% blockage in the bottome of the LAD artery, 95 % in the middle of the same artery. This artery is called "The Widow Maker" cause if it blocks anymore he will have a quick and easy death. Just keep him in your prayers, we need them, I want him around for alot longer than what I have had him already. I hope you find peace with your Crohn's. Take good care

sorry for the rambling just needed to vent....thanks Hope you find peace with Crohn's. Take good care,
Love Goes There, Jeaneau
 
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hannahleigh89 replied to Magsjeanea's response:
Oh Mags, I'm sorry.
 
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arbob5 replied to Magsjeanea's response:
So sorry Mags. You are both in my prayers.

I, too, have a very helpful and thoughtful husband, I don't know how I would have survived this UC without him. While most people do not understand what we go through, he got on line, and read as much as possible about it. He was sympathetic, and always put me first. I certainly do appreciate him. And he too has health problems. He had throat cancer, and quadruple bypass surgery several years ago, but you really wouldn't know it. He is very active and just never slows down. While some think he should take it a little easier, I do believe that his activity is really keeping him going. He has taught me that, so as a result, I try not to sit back and feel sorry for myself. I stay active and do as much as I can. And, so important, POSITIVE THINKING. It really does work!
 
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Magsjeanea replied to arbob5's response:
Thanks Hannah and Arbob, I know I will always have y'all to talk to. He is a very positive thinker and will go through heaven and hell to make sure he does the right things to stay alive. Just in the last 3 weeks he has lost 8 lbs and is on fat free, low carb, low sugar diet. I have been a nurse for too long to not know that I need to be prepared and need to help him stay with us. Again thanks for the support. Take good care,
Love Goes There, Jeaneau
 
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OyWithThePoodlesAlready replied to Magsjeanea's response:
oh wow, sorry to hear about your husband!
 
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cook1958 replied to Magsjeanea's response:
I am so sorry............life sometimes seems so unfair. You are both in my thoughts and prayers.
I am so blessed to have a husband that understands and tries to make a difference. Some things we just have to do on our own.
God Bless.
 
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crohns2006 responded:
Hi SweetMIchelle45,

I was diagnosed with Crohns 5 years ago at the age of 36. My doctor tried many,many medications and I could never seem to get any relief for very long. For the past year and a half I have been on Pentasa,Azathioprine,Omeprazole (for my terrible acid reflux that seems to make my Crohns even worst), Prednisone (1- 5mg tab every other day) Probiotics,Fish oil tablets,and vitamin D. I am relieved to say that so far my Crohns seem to have calmed down quite a bit. Yes, I will be the first to say its terrible having to take handful of meds every morning,but it sure beats always being worried if a restroom is always nearby,not to mention the terrible stomach pains that come along with it. Just remember that you're not alone and my thoughts and prayers go out to you in hopes that you too will find some kind of relief from this terrible disease.
 
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forgetfulagain responded:
Hi,

I've had symptoms of Crohn's since childhood but only got diagnosed in my mid 20s.
As for medication, I've been on (apart from Asacol) just steroids (prednisone for months, methylprednisolone, and now Entocort) and it has worked ok.
I've had those 9months-pregnant looks as well, ER visits, once I had an entire bowel prep and had no bowel movement for over 24 hrs...
I'm guessing Opium was for pain? If so, it can cause constipation like nothing else! All narcotics will do it.
As for diets - none ever put my disease in remission. Other than yogurt-only diet - lived like that most of my college years... Wouldn't necessarily recommend it if you want to regain that weight...
I was wondering what tests you had recently and what are your symptoms? I don't pretend to know much but maybe someone else will have symptom-specific advice... Have you tried other than biologic immunosuppresants? I thought there were a few out there - drugs used for cancer treatment etc.
Please let us know how you're doing...


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