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    Old 07-13-2004, 01:13 PM   #1
    SuperMichele21
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    Exclamation Crohn's/Colitis

    Hi! My name is Michele. I do not have Crohn's/Colitis but my friend does. Everytime that I hear he's in the hospital or just got out of the hospital, i worry for his health. He's only 17, and about to turn 18. I know that he's been through a lot and i believe that he can overcome this problem. What i'm here to ask is...How can i be there for him? I've heard that it's difficult for someone with crohn's/colitis to talk to someone without it! I can't help but feel like i need to let him know that i'm here for him, in everyway! I just think that he isn't opening up to me because i'm not in the same boat. If you could, please help me!! Any advice REALLY does help!!

    Last edited by SuperMichele21; 07-13-2004 at 01:15 PM.

     
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    Old 07-13-2004, 11:22 PM   #2
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    Re: Crohn's/Colitis

    Hi SuperMichele,

    Just one clarification. It's Crohn's Colitis. It means Crohn's disease in the colon. (not Crohn's/Colitis which would mean both or either)

    I'm concerned with one statement you said.. "I believe that he can overcome this problem". It's not a problem. It's a disease he will have for the rest of his life.

    The disease attacks the entire wall of the intestine, from the inside to the outside. ALL of it. It can be anywhere from the mouth to the anus. It can be in one place as well as another. Surgery will not cure the disease. A person who has Crohn's will also have other physical manifestations. It can affect the eyes, joints, muscles, liver, kidneys. A person with Crohn's disease can have severe intestinal blockages where emergency surgery is necessary. The possibility that your friend may have to have his colon removed is a distinct possibility. Crohn's disease can cause abscesses and then eventually fistulas. Those are basically tunnels from organ to organ. So, imagine a disease that just burrows holes in the body.

    Medications for a person with Crohn's disease can also have serious side effects. Some cause allergic reactions. Some medications may work, others may not.

    It takes many years for a person with Crohn's disease to get to know the reality of it -- a hell disease, and I truly feel for him.

    So, it's not a problem. Overcoming it isn't a priority in one's life as is learning to accept and live WITH it. And, that can take a while.

    OK, soapbox put away.

    You're a wonderful friend who has extended your heart to someone who has something potentially debilitating. If you want to know what to do, educate yourself about Crohn's disease.

    Your friend may misunderstand your intent on being there for him. Sometimes, it's just difficult to have friends, because dealing with oneself takes up a lot of time --- and it's just easier at times to not have to explain what's wrong. There are many fears, there is much pain, and talking about bowel movements, pain, gas, diarrhea, constipation....isn't something that everyone wants to hear. Some people CAN't talk about their disease. He may not be able to relay his feelings about the whole thing, or he just doesn't care to talk about it and it's not important to him.


    Bathrooms are almost always on the mind of one with CD. He will possibly be fussy with foods -- not eating many.

    Your friend will have to find the balance. That means to have friends who understand, friends who just listen, friends who can just be normal....etc.

    Words of encouragement can definitely be taken the wrong way. Ask how he's doing, ask what meds the docs have him on, ask him how he's feeling....etc. You could also openly ask him what he would like from you as a friend.

    Just be you, and be understanding, and know that if he says he's not feeling well, he probably isn't.

    If you are true in your intent, it will work as any relationship. It grows, has ups and downs, continues or doesn't. Try not to have too many expectations.

    Your friend will be going through tough times, and you as his friend sometimes takes the brunt of emotional relief. You are a person with feelings as well. Just because dealing with chronic disease is difficult, it doesn't allow one to be rude or disrespectful. But, there will definitely be moments.

    It's tough having a relationship with no health problems involved. It's tougher when that can sometimes when health is a primary focus.

    I wish you both the best, and that your friend is able to get his CD stablised and out of the hospital soon.

    quincy
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    Old 07-14-2004, 08:09 AM   #3
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    Re: Crohn's/Colitis

    Quote:
    Originally Posted by quincy

    I'm concerned with one statement you said.. "I believe that he can overcome this problem". It's not a problem. It's a disease he will have for the rest of his life.

    quincy
    Yeah I know that he can't just get rid of it..I was kind of meaning get over it mentally and live life like a normal 17 yr old, just with a few minor adjustments. Sorry for the misunderstanding.

    I'm trying to learn as much as i can about this diease, but there is so much info to take in. I will keep researching. Hopefully I can talk with him about this and he'll probably notice that I'm trying my best, but at times it's hard to comprehend EVERYTHING!

    {I think that my friend has a calstomy(spelling?) bag, so i don't think that he has to worry about the bathroom as much}

    Thanks Quincy!! You helped me a bunch!!!

     
    Old 07-14-2004, 08:30 AM   #4
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    Re: Crohn's/Colitis

    Quote:
    Originally Posted by quincy
    Hi SuperMichele,

    Just one clarification. It's Crohn's Colitis. It means Crohn's disease in the colon. (not Crohn's/Colitis which would mean both or either)

    I'm concerned with one statement you said.. "I believe that he can overcome this problem". It's not a problem. It's a disease he will have for the rest of his life.

    The disease attacks the entire wall of the intestine, from the inside to the outside. ALL of it. It can be anywhere from the mouth to the anus. It can be in one place as well as another. Surgery will not cure the disease. A person who has Crohn's will also have other physical manifestations. It can affect the eyes, joints, muscles, liver, kidneys. A person with Crohn's disease can have severe intestinal blockages where emergency surgery is necessary. The possibility that your friend may have to have his colon removed is a distinct possibility. Crohn's disease can cause abscesses and then eventually fistulas. Those are basically tunnels from organ to organ. So, imagine a disease that just burrows holes in the body.

    Medications for a person with Crohn's disease can also have serious side effects. Some cause allergic reactions. Some medications may work, others may not.

    It takes many years for a person with Crohn's disease to get to know the reality of it -- a hell disease, and I truly feel for him.

    So, it's not a problem. Overcoming it isn't a priority in one's life as is learning to accept and live WITH it. And, that can take a while.

    OK, soapbox put away.

    You're a wonderful friend who has extended your heart to someone who has something potentially debilitating. If you want to know what to do, educate yourself about Crohn's disease.

    Your friend may misunderstand your intent on being there for him. Sometimes, it's just difficult to have friends, because dealing with oneself takes up a lot of time --- and it's just easier at times to not have to explain what's wrong. There are many fears, there is much pain, and talking about bowel movements, pain, gas, diarrhea, constipation....isn't something that everyone wants to hear. Some people CAN't talk about their disease. He may not be able to relay his feelings about the whole thing, or he just doesn't care to talk about it and it's not important to him.


    Bathrooms are almost always on the mind of one with CD. He will possibly be fussy with foods -- not eating many.

    Your friend will have to find the balance. That means to have friends who understand, friends who just listen, friends who can just be normal....etc.

    Words of encouragement can definitely be taken the wrong way. Ask how he's doing, ask what meds the docs have him on, ask him how he's feeling....etc. You could also openly ask him what he would like from you as a friend.

    Just be you, and be understanding, and know that if he says he's not feeling well, he probably isn't.

    If you are true in your intent, it will work as any relationship. It grows, has ups and downs, continues or doesn't. Try not to have too many expectations.

    Your friend will be going through tough times, and you as his friend sometimes takes the brunt of emotional relief. You are a person with feelings as well. Just because dealing with chronic disease is difficult, it doesn't allow one to be rude or disrespectful. But, there will definitely be moments.

    It's tough having a relationship with no health problems involved. It's tougher when that can sometimes when health is a primary focus.

    I wish you both the best, and that your friend is able to get his CD stablised and out of the hospital soon.

    quincy
    Hey Quincy and supermichelle! Quincy, first of all, I'd like to say that was a wonderful post, but wow, you really made Crohn's seem horrible. Do you have a really bad case of it? I mean, it CAN be horrible, but most cases don't have to be. Many cases of Crohn's, in fact, can be bad for a few weeks, but then go in to remission for many months to years. You are right though, many people learn to live with it and deal with the relapses.

    A couple of things I wanted to add (I hope you don't mind quincy). I am not a fan of calling the disease "Crohn's colitis" because you get mixed up with the names. Crohn's disease along with ulcerative colitis, are two separate (and totally different) diseases which make up the entity known as inflammatory bowel disease (NOT to be confused with irritable bowel syndrome).

    Crohn's as quincy said can involve any part of the GI tract from the gum to the bum. Though most cases involve the small bowel in some way (usually the terminal ileum). Crohn's has a patchy look to it when you look at it through a colonoscope, and it involves inflammation through the entire thickness of the bowel wall (again, like quincy said).

    Ulcerative colitis is a little bit different. It usually ONLY involves the large bowel. It always involves the rectum and in different patients, continues upstream to various degrees. Ulcerative colitis only involves the most superficial layers of the bowel wall.

     
    Old 07-14-2004, 03:01 PM   #5
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    Re: Crohn's/Colitis

    Hi butterflytrans,

    No, I have ulcerative colitis....limited to the distal part (rectum/sigmoid). A mild case controlled by 5ASA meds. I have a great doctor and have had it for almost 18 years, but diagnosed 15+ years ago.

    Now, why would I mind clarification.....you're an equal member of this board and I certainly don't know everything ;-) Clarify away.

    Crohn's in the colon IS called Crohn's colitis. I understand that term clearly, but many people think it can be Crohn's with ulcerative colitis. But, I do understand why you'd be averse to the term.

    One cannot have both at the same time (as clarified and confirmed by my doctor).....contrary to what people may believe. The term colitis is loose....but Crohn's colitis is definitely in the bowel. Not all the bowel, but in the bowel. One can also have Ileitis, and Crohn's colitis at the same time...etc.

    With ulcerative colitis, one can have backwash ileitis....that's where it's just into the ileum from the "backwash" from cecum involvement at the opening of the appendix. One with ulcerative colitis can also have severe rectal involvement as well as cecum involvement with all the rest of the colon clear. But, it ALWAYS starts at the anus and isn't patchy throughout the colon as you stated.

    Crohn's can also have severe anal/rectal involvement and is much times confused with ulcerative colitis. When the fistulas start showing up....it's definitely crohn's. (I have a friend with this and it's hell for her....but she's handling it very well -- I'm in awe!) I never knew this until her experience.

    UC and CD are two different diseases for sure.....but there are some that believe otherwise (small following). Methinks it's because the beginning stages of CD in the colon looks like and acts like UC. In any event, the first prescribed meds (usually 5ASA) for both would work in treating the inflammation.

    Do you have UC or CD? Where is yours and what meds are you on? How are you doing at this time?

    Thanks for the input.....any that is valid always is helpful and NECESSARY it seems.

    Talk soon,
    quincy
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    Old 07-14-2004, 03:31 PM   #6
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    Re: Crohn's/Colitis

    Quote:
    Originally Posted by SuperMichele21
    Yeah I know that he can't just get rid of it..I was kind of meaning get over it mentally and live life like a normal 17 yr old, just with a few minor adjustments. Sorry for the misunderstanding.

    I'm trying to learn as much as i can about this diease, but there is so much info to take in. I will keep researching. Hopefully I can talk with him about this and he'll probably notice that I'm trying my best, but at times it's hard to comprehend EVERYTHING!

    {I think that my friend has a calstomy(spelling?) bag, so i don't think that he has to worry about the bathroom as much}

    Thanks Quincy!! You helped me a bunch!!!


    Please take my bluntness in stride....it's not meant to be rude, just educational.


    Minor adjustments?? I don't think so....Learning to live with a colostomy (a bag that your stool is stored into) would be difficult especially at first. As a matter of fact it's my biggest fear (I have UC). As well, there may be future surgeries which would be possible so that the bag is in the body instead of out of it. Both have to be emptied, cleaned meticulously so that infection doesn't set in....etc. It's a different way of life and would definitely take more than just a minor adjustment.

    How do you feel when you get our period? Do you have to change pads, tampons, isn't it a pain to have to deal with that once a day? In comparison.....imagine having to deal with poop, not blood on something that can just be discarded and another one attached or inserted and away you go. With the bags, they would have to be emptied many times a day. I understand they're also noisy....something else to be a reminder and possibly something to hide.

    He's not a normal 17 year old. His body is changed and functions differently now. There will be many issues that he will have to face, intimacy being one of them. But, this has happened to him when he's young, and life goes on.

    You're still on the right track tho, but find out what surgery he had to have done. Read up about colostomy (removal of the colon and replaced by an external bag), and the various Crohn's surgeries. That can open the door to discussion and questions to him....at least if he uses terminology, you'll understand it. There are complications at times, but it's not necessarily the norm. One has to recuperate after surgery and that does take time.

    Meds will still be required. You can find out about that as well.

    Remember, you're not living with it....and YOU'RE overwhelmed by the info. keep it all in perspective for you won't learn it all in a short period of time. It's understandable for sure.

    It all takes time, just go along with the process and just deal with each day as it comes. It's not a straight forward disease. Let your friend set the pace. Intake of info from any avenue varies with everyone.

    You seem like a great friend and with good friends, the ups and downs of recovery can be smoother.

    Maybe through this....you'll pursue a career in the medical field?? ;-)

    I wish you the best,
    quincy
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    Old 07-15-2004, 01:57 PM   #7
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    Re: Crohn's/Colitis

    Small note....UC always involves the rectum, not the anus. Anal involvement with UC obviously exists, but as you have said earlier, that is more common with CD. Seeing patients having to deal with fistulas and fissures is quite eye-opening as you come to the realization they have to live with it every day. I've also seen a few cases of perianal sepsis eventually leading to severe fistula formation...not fun....especially after the infection has cleared up and their fistulae are treated with the cutting setons. Again....not fun.

    Quincy, do you have any extraintestinal symptoms of UC? Any problems with sclerosing cholangitis?

     
    Old 07-15-2004, 03:16 PM   #8
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    Re: Crohn's/Colitis

    Quote:
    Originally Posted by butterflytrans
    Small note....UC always involves the rectum, not the anus. Anal involvement with UC obviously exists, but as you have said earlier, that is more common with CD. Seeing patients having to deal with fistulas and fissures is quite eye-opening as you come to the realization they have to live with it every day. I've also seen a few cases of perianal sepsis eventually leading to severe fistula formation...not fun....especially after the infection has cleared up and their fistulae are treated with the cutting setons. Again....not fun.

    Quincy, do you have any extraintestinal symptoms of UC? Any problems with sclerosing cholangitis?

    Hi, What you say is true....but UC does start at the anus (internal). Maybe there's inflammation there, but not active disease... (haven't done any searching about that part....but it's stated that it starts at the anus, not at the rectum). Definitely not active disease as in CD which is external anus as well. Maybe talking about anal involvement means external???
    Interesting....maybe just perspective.

    But, those with a colectomy (UC only)....if the anus hasn't been removed, for some there is still disease involvement and eventually an analectomy has to be done. So, it still involves the anus.

    Interesting you mentioned PSC.....it's been suspect because of my increased liver enzymes 7 or so years ago. That was a ride for sure. I didn't have the internet at that time, and a friend printed about a 2 inch stack of info. As I hilighted it I basically cried for 2 weeks. One piece of info helped alleviate my distress....a doctor was against the ERCP as a test tool, stating the incidence of pancreatitis and triggering PSC in people who only may have had the potential for it to happen maybe many years down the road was way too high, so it should only be done in people where other symptoms where almost positive that PSC was active.

    So, I nixed the ERCP and my doctors agreed. So far, my enzymes are steady at the elevated level.....so unless they start to increase, it's not a concern. The specialist said that the fact that I'm female would be a probability that I don't have it anyway.... What are statistics anyway, I've never been one that fits in with statistics....

    My sister has 3 ERCPs done for gallbladder disease and now had pancreatitis. I wasn't willing to risk the probablility of getting that as well.

    Other manifestations are body pain, slight eye problems, some mouth cankers that come and go. Nothing severely problematic or OBVIOUS....but I've had many little things forever...so who knows. My dad had ankylosing spondylitis..there's a connection for sure. I also have asthma (inherited from my mom's side of the family)...but there are many who seem to have both UC and asthma..so who really knows.

    How about you? Do you have UC or CD, and what other connected manifestations to you have?

    How long?, what meds, etc?

    Thanks,
    quincy
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    Last edited by quincy; 07-15-2004 at 03:20 PM.

     
    Old 07-15-2004, 05:32 PM   #9
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    Re: Crohn's/Colitis

    Quote:
    Originally Posted by SuperMichele21
    snip Any advice REALLY does help!!
    Tell him to discuss intravenous Remacaid (Remacade) w/ his docs. DH had Crohn's for a couple of years, was on prednisone and some other drug, did the dietary restrictions and all, finally had a massive bleed-out and got one treatment of IV Remacaid and his Crohn's is *GONE*! It IS curable, no lie.

     
    Old 07-15-2004, 06:11 PM   #10
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    Re: Crohn's/Colitis

    Hey quincy...I don't have either....I just know a lot about the subject because of what I do.

    Skyspinner, remicaide is often a good treatment, but it doesn't cure the disease. It just puts it in to remission. The tendency for bowel inflammation is still there, and if you trigger it again, it'll come right back. Plus, remicaide is very expensive and it can have a lot of side-effects....especially allergic stuff and anaphylactic shock.

    Remicaide is a good solution for people who have failed other treatments, but it is by no means a panacea.

     
    Old 07-15-2004, 10:14 PM   #11
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    Re: Crohn's/Colitis

    Ah, how so? You work for a GI? First hand info for sure!!

    I have the best one in the world ;-)....I hope he never retires. Of course, that's mighty selfish of me, isn't it...but I've received such good treatment and his philosophy of treatment definitely suited me, and for that, I'm grateful!


    I had one instance where I had to see another doc in the same clinic because my doc had an emergency. That doc told me bluntly that if I were his patient, he would have had me on prednisone immediately. I was shocked and said that I was relieved he wasn't my doctor. I shudder to think how I'd have been if that was the first line of treatment -- not so for where mine is. 5ASA rocks for sure!

    Your input is definitely invaluable on the boards, thanks for the input.

    Best to you,
    quincy
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    Old 07-16-2004, 01:31 PM   #12
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    Re: Crohn's/Colitis

    Quote:
    Originally Posted by butterflytrans
    snip
    Skyspinner, remicaide is often a good treatment, but it doesn't cure the disease. It just puts it in to remission. The tendency for bowel inflammation is still there, and if you trigger it again, it'll come right back. Plus, remicaide is very expensive and it can have a lot of side-effects....especially allergic stuff and anaphylactic shock.

    Remicaide is a good solution for people who have failed other treatments, but it is by no means a panacea.
    No.....it's a *treatment*.

     
    Old 07-18-2004, 07:51 PM   #13
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    Re: Crohn's/Colitis

    Hi, Had to voice my opinion on Crohn's, my niece 18 years has just been told she has crohns and she needed 5 pints of blood, due to blood lose, she is on meds. now, we thought she was never going to feel better, but she has had many good days where she can function and even spend time with her friends, which she was too sick to do before. It takes time for meds. to start to help, not cure it but help people with it make it thro the day. We pray that with all the testing that they will find a cure, but in the mean time we have to support her, knowing everyday can chage how she functions, but she has bad days, but for every good day we feel blessed. She also takes alot of imodium, I dont know if it is the right thing to do, but if she feels better taking we dont say anything. Also being stressed is very bad for crohns, try to talk to your friend and express your conserns for his health, and how important it is to stick by him and try to keep his stress level as low as possible. He will be our prayers and I like you pray for a cure for crohns in our life time.
    best of luck Cookie

     
    Old 07-27-2004, 05:38 PM   #14
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    Re: Crohn's/Colitis

    hi,im dennis i had crohns for 10 years.been to all the doctors,they tell me the same thing but nothing helps.i lose 22lbs,so sick i cant even drive a car.after i did get over it some what,i found a that colonics and enemas was the only thing that would help me.a lot of people thinks its crazy for doing colonics and enemas.i did to at frist,but i tried everything that the doctors said and it wasnt working,so why not.im gald i did,i havnt felt so good in many years.i dont know now bad hes got it,but i had it pretty bad only thing that i know that could help.

     
    Old 07-27-2004, 06:56 PM   #15
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    Re: Crohn's/Colitis

    Hi Dennis,
    Just read your post and am wondering if you ever lost blood? My niece loses blood to the point she needs transfusions. She has been doing fairly good the last couple of weeks,but the other day she had blood again. I have read many post about crohns, and do not see anyone write about losing blood, so I am confused, do people with crohns lose blood or is it unusual for that to happen. Any reply would be welcomed.
    Thanks for any help Cookie

     
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