# Something to think about for all Crohns Forum Members



## mikeyarmo

Hi everyone,

I just wanted to put this down as it is important for *all* of us to remember as members in this community. 

While we are all connected through our affiliation with Inflammatory Bowel Disease in some way, we all have a different experience with it. There are not even simple categories that can organize us all, as the amount of experiences ranges so heavily. There are some of us who have had this disease undiagnosed for a long time, but only recently have been diagnosed, those who have been diagnosed for many years and those who are recently diagnosed. There are some of us who are not even sure if they are diagnosed yet. As anyone who has read several of our personal stories with IBD knows, know two experiences are exactly alike.

So that is why it is important to remember a few things whenever you post, whether asking a question, providing an answer or any other reason. 

First some tips everyone should keep in mind:

It hurts to stub your toe. It hurts more to break your toe. That does not mean the first person has not experienced pain themselves. It is important to remember that everyone is different in what they have dealt with in this disease. Some people may be worried about having their first colonoscopy while others are worried about their 4th or 5th surgery. Both worries are a big deal in the minds of the individual, and it is never comforting to hear someone say something along the lines of deal with it or I have had to deal with much worse. I do not think it is wrong to point out a person's misconception regarding something (like overall a small bowel follow through or barium swallow is definately worth it if you are going to get a diagnosis and treatment plan), but it is important to remember we are all at different stages with this disease and all experiences are something new and difficult to deal with for many. It is important to not brush everything off as "not a big deal" when it is for a person. Obviously this is something that should be used when this is in fact the truth (like with going on some medications like Pentasa), but it should not be figuratively shoved in a person's face or to make a person feel bad for worrying about something. Especially in the support sections where people may be looking for some support even if they know what they are going through is a normal procedure or occurence, try to by empathetic. 


Those of us with more experience with this disease have likely done a lot of personal research or (unfortuantely) have a lot of personal experience with the different aspects of this disease.  While there is no doubt that your wisdom and advice are appreciated by others on the forum, it is important to remember that the people your are helping are at a different stage with their disease then you are. I am not talking about the severity of the disease (which is always important to keep in mind) but rather where they are in coming to grip with the fact that they now have this disease. Most people likely know very little about their disease, and they are frightened at first diagnosis. We all know those initial questions and fears running through our heads, and we often have no one to turn to for help and wisdom. That is why it is important to really try and remember what it was like to be in that stage of your disease, and be supportive and helpful to individuals. While some people may ask a series of impossible questions to answer all in the same post (how will this medication affect me? When will it work? Can I eat this food? Why do I have these symptoms? etc.) it is important to be patient with these people. There is nothing wrong with telling someone that they are asking questions that no one has the answer to, but you can try and let them know if these were questions you once had yourself and either how you learnt to deal without having the answers to these questions, or how to best determine what is right for a person. For example, with regards to food related questions I often recommend a person keeps a food diary, so they can determine how different foods affect them. This can really be done for medications to, as a person can right down how they are feeling each day and what symptoms they are having based on new medication changes. This is best seen in Kev's recent posts with his personal Prednisone Diary.

It is also important to remember what it is like when you are really down or depressed about your disease and your current situation. Those who have been there and have been out of that situation know that it is not a good place to be in, and would know it is not always helpful to just  recommend to someone that they need to stop thinking so negatively. I think it is important for all of us to remember that such bad feelings are likely not going to go away when being told by someone else to "stop being depressed" or that changing our thinking will be enough to make us feel better. That will likely just make the person feel worse, as this is what they are hearing from other people in their life and they are posting here to find others who can relate to what they are saying. It is important that people realize when they are not taking the right approach to their disease or attitude, however when people post here they are mostly looking for a way to relate what they are going through with others. A procedure we have never heard about before can sound very scary, but it helps to read some posts here to learn what others went through with it and to learn some things that are not always told to the patient by a nurse or doctor. 

So what I ask all of you to do is try and relate to a person as best as you can and let them know if/when what they are posting is something you have experienced yourself. In the case with feeling bad or depression, this is most important to know the feelings are normal. From there you can give your recommendations (how you got out of the feeling bad in this case), but first take the time to connect with the person to let them know they are not crazy or different. While this disease is different for most people, we all seem to go through many of the same feelings and worries. It is important to know this, especially when you are new to this disease and feel so different and isolated.

For those of us here who are here to learn more about this disease or who are newer to it in general, I hope you see this place as a friendly and supportive community. That is the mission of this Forum, and at any time you feel this is not the case I encourage you to give me a personal message at the forum or e-mail me. 

We are all hear to help each other, but it is important to realize we do not have all the answers. We do not have any medical knowledge that can not be found elsewhere or know what will work for everyone. We all have our personal stories and experiences though, which we will share with you. But what works (or does not work) for us does not mean it will be the same for you. While there are many foods that affects most of us negatively, this is not the case for 100% of the IBD population. So please understand that we can not answer questions with 100% accuracy that deal with how you will react or be affected by certain changes with your disease and its treatment. 

Many of us also did not have access to a community like this when we were first diagnosed with the disease. Some of us were diagnosed before foundations like the CCFC & CCFA were as organized as they are today. So while we encourage you to ask questions and seek help, we also encourage you to do your own research. There are many books written on living with Crohn's Disease and Ulcerative Colitis. The internet also has a plethora of information, so use this resource to your benefit! It is vital to realize that not all information is factual, and some of it is written with the purpose of promoting other products (books/products,etc.). This is a place to learn more about this disease and everything related to it, so feel free to post something you have found and we can all discuss it. Remember that this community has a lot of previous discussion on many topics, so be sure to look through this material to learn about others experiences with the disease or learn more about different topics. The search function of the site is very helpful, so I recommend using it, especially before asking a question that may have been asked before.

Overall this is a community where you should feel comfortable posting at, so all rules or recommendations we make centers around the premise that we are all equal members here. I am ALWAYS willing to receive messages from members, whether its compliments (which I will never say no too ), criticism, suggestions or  anything else. If you have a question you are not willing to post publicly, feel free to ask me personally (I don't know everything, but at the very least I should be able to direct you to some helpful information) or post it in the support forum.  Posting your story in the Your Story forum is also recommended, as you may be able to meet some friends there immediately who have been through something similar to you.

The new members, old members, wise members and inexperienced members are all equal members of this community. I hope this has helped you all be more supportive and effective members of this community. If you have any other suggestions for all members to remember please post them below so that we all can remember your advice when posting here.

Thanks for reading and let's continue to keep this the most supportive and informative IBD community on the net!


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## xrayzerase

mike
this is beautifully said and written.
i wish you'd consider putting it at the top (sticky) of the entrance page-or somewhere like that-
i think it may be a good thing for all to read -and so it won't get buried and perhaps missed because of that.
i say this in part for myself--but also for everyone. and newbies--who especially are just starting with needing to find support and/or info on a site.
anyway
just-this was beautiful-and it makes me see why this firum site you started has become and continues to become a place for cd/ibd-all of it. or even stuff similar-but not quite catagorized as "ibd" (yet--or not "yet") -it is both a place of heart as well as a place of learning.
you are a truly cool person
i am glad to be here
andrea


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## teeny5

I totally agree with you.  We all have different experiences and are at different stages, but it can all be scary.  All we really know is what we have to deal with right now and that is what is important to us.  I appreciate all of the experiences of others even if it is something I haven't been through.  We are all here to support one another.  We have enough people in our lives telling us to 'just get over it' or 'stop being depressed.'  This is where I come to get away from that.


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## LeafyOYT

yeah the pain sucks.... and the amount of toilet paper I go through is scary!


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## Kev

This forum contributes a lot more than just information.  When I first found this site I was...  well, in bits and pieces.  Freshly diagnosed after a nightmarish tryst of mis-diagnoses and operations, I was almost manic.  I hoped this site would be the answer to my prayers.  That there would be a home grown cure just to be had for the taking... something the docs didn't know.. or didn't believe in.. and that I'd be at the end of my ordeal.  I was pretty much very 'me' centric at the time..  I didn't like what the disease did to me.. I didn't like all of the bleeding, I didn't like the pain, I didn't like the diarhea, I didn't like the loss of my career, ... It was all I, I and I.  I came here, lurked about a little, told my story, but it soon became apparent that there was no miracle cure waiting in the wings.  But I found something better.  In reading about others, I lost that me mentality.  I wasn't alone in my focus..  the trials and tribulations of others pushed those thoughts aside.  I found peace in lending an ear, offering advice, sharing a laugh...  I rarely think of my disease now, and when I find the time, I pop in here to see how others are doing... AND that has changed my life with this disease forever.  So, this forum offers so much more than just info. Trust me.


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## Leafy2

Thank you kev im glad there are older heads in here who might be able to tell us young ones what we're in for,


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## Jojg

*Thank you for your guidance.  I am new to site and wondering where to post*

Hello.  My 11 year old daughter has just been diagnosed with Crohn's.  I am still in the denial stage as I don't see her symptoms as that bad.  I worry that the medication they will recommend will make her feel worse than she does right now.  I am wondering if anybody has had similar symptoms and what has happened over the years?  She currently is anemic and hasn't grown much in the last year, has inflammation in her stomach, esophogas and a little in the colon; but also has a few ulcers in different places.  The one that bothers her is in the esophogas as it hurts a little when she eats.  She doesn't have any diarrhea or stomach pain.  Am I delusional to think this will be the extent of her symptoms?  I so desperately want her to avoid long term medication and its side effects.  Is it possible to monitor the inflammation by taking blood tests every few months and being careful with what she eats?  And then, if it gets out of control, take the meds?

Where should I post her story?  I'm not even sure this post will work.  I've never posted on any website!

Thank you in advance for your help, anybody.


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## Guest

hi Jojg, welcome to our forum.

firstly, my heart goes out to you.. sometimes we feel we can cope with our own illnesses better than we can watching our loved ones suffer.

you can post her story in here http://www.crohnsforum.com/forumdisplay.php?f=5 

click where it says 'new thread', and take it from there. any problems, just shout. you can either post in here again if you get stuck, or private message (pm) one of us staff. to send a private message, click on the person's name in a post, who you want to message, and a drop-down menu will appear. 'send private message' is one of the options.

don't worry about finding your way around the forum, it will soon become familiar to you.

regarding your little girl.. the anaemia can be sorted out, hopefully pretty easily. i presume she's under the care of a gastro specialist - he/she will probably have made recommendations to address this already, i would imagine.

has anyone mentioned what meds they're thinking of giving her?


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## alexfell

Jojg, my son started off with those kinda symptoms last year ...way back in April. Started with oral thrush...then that moved to the nether regions and under his arm pits. They were red raw. Noone could tell him what was going on.  After months of return visits & tests..I finally took him to see MY GP...by now he had very little appetite & when he did he would have heartburn..or it was uncomfortable for him to swallow. He was also found to be SEVERELY aneamic. He had lost abt 25 kilos  ( 50+ pounds)  & was down to 55k For a 6 foot boy he looks pretty thin. To cut a long story short...the diarrea didnt start until end August/ September so it took abt 5 months for it to really take hold.  After a referral to a specialist we finally got a diagnosis of Crohns in January.
Right now we are trying to find something that works for him. prednisone worked at first...He had no side effects with it & hadnt felt so good in months. When he had to come off that he was given Solafalk which was useless for him & he had to go back on prednisone which now doesnt seem to be working like it did the first time around.  Now he is taking Imuran. Fingers crossed. 
I feel for u & your daughter.  This isnt an easy journey for anyone.


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## ruthio27

Hey Jojg.

I know exactly how you feel! My son is 11 was diagnosed 18 months ago and has pretty much the same symptoms as your daughter. The doc has put him on the Modulen IB diet ansd i have to say it is really hard. He is absolutley miserable and its only day 4 weve got 6 more weeks of this to go! He's spending all of his time hiding upstairs n his bedroom avoiding life it seems!

Have they not put your daughter on any medication yet?

Charlie was on steroids for 6 weeks about a year ago and then he was in remission up until now, if i thought he could go on them once a year for a few weeks and they woul d solve his problems, it would be great!

unfortunately im not sure it works like that!

Its good to know he's not alone out there anyway!

Good luck

Ruth


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## nwtnurse

*What an interesting site*

Hi, it so nice to find a site where everyone is an individual as we should be and realising that just because we have Crohn's doesn't mean that we exhibit the same signs, symptoms, treatments, experiences.  One thing I have noticed that is similar to us all is the ups and downs that we tend to go through, also the constant feeling of being in the mode of is this an exacerbation....is this pain due to Crohn's....could it be hormones causing this flare up....I am sure it is something else and not Crohn's at all.  

Ahhh blissful denial (what a wonderful phrase), which I tend to use a lot and then low and behold I should know better, as from out of nowhere the wonderful gut decides to let me know that it is present....lol.  I was diagnosed early 2006 at the age of 45 and needless not too impressed as I knew quite a bit about Crohn's due to my brother in law having it and not very well with it.  So of course was sure that I was going to be the same.  I am pleased to say that I believe I have a mild case compared to him and others that I know and feel blessed at this time.

Since my diagnosis and after lots of research, talking with lots of people, teaching my surgeon, that some alternatives can be helpful.....actually it is nice to have a surgeon that is prepared to listen and learn new things.....willing to try new things and not jump to surgery straight away.  

I would like to acknowledge Kev regarding hormones do affect Crohn's as I did not think it possible until my surgeon said "Oh yes hormones can certainly screw things up"....I think that gave me some relief or was it that menopause is creeping up as well....oh well it just makes life interesting ....does it not?

I would like to say thanks for having me and I look forward some discussions etc.


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## GoJohnnyGo

Welcome nwtnurse!


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## g.turner53

*only mee*

never really been into the net or wanting 2 chat  with peeps alike, or even  open my eyes to the fact im not the only one with this real pain in the ass disease:lol: :smile: , u all sound like some very special peeps and thankyou!


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## bella_sky

well said, we all are very different yet connected - you have a unique writing ability which is very touching!


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## lc2978

Thank you Mike, it helps. Gettin 1st surgery on Friday 12PM.


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## worriedmomnj

*Recently diagnosed Crohn's  in adult daughter*

I am new here. Grateful for this site to be able to relate to those in the same predicament. I am so concerned about my 34 y/o  daughter just diagnosed with Crohn's following endoscope, colonoscopy, CT scan, barium follow through, labs . Severe stricture terminal ileum, on prednisone 40mgm every time decrease to 30 mgm she has severe flare . B12 shots weekly for month now. Starting Cimzia this week . Anyone here on this med or have taken this med? Results? So difficult to see her in such pain and my inability to ease it. I hate this disease for her! 
I have sent for most all of the CCFA literature to better educate us. Her GI doc is great and is available whenever she calls. We know she's in good hands but I am an impatient mom when my 'baby' hurts!


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## Justicexhaze2

Thank you...and very well written.  The disease has more variables than Vegas.  I myself have refused to go to any group meetings because I have been just too angry about the disease to sit and listen to others.  Then... a 13 year old kid commented on one of my videos on youtube-Crohns Chronicles.  He was scared...and at that time I felt his pain and wanted to help.  I was 7 when I was first diagnosed (I will be 44 soon).  I didn't and don't have all the answers...but one thing was for sure...I let him know...he was not alone. WE.... are not alone.
John C
Diagnosed in 73'
First resection 87' because of fistula
Second resect 99'  abcess
2007 flair up with liver complications
2010 stricture found
treatment- prednisone and humira


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## My Butt Hurts

Awesome first post John - we are not alone.
If you redo it in a new thread in the 'my story' section, you might get a more proper welcome.
Glad you're here.


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## Nicole

*New to Crohns*

Hello Mike,

My name is Nicole Phillip-Marcano from Trinidad, W.I. and I was diagnosed with Crohn's of the small intestine and Colon four (4) months ago.
I have since been on Pentasa, antibiotics and pain relievers, Xtendlife fish oil, sulfasalzine and recently, prednisone - 40mg per day.

I have been having quite a bit of pain on my left abdominal and sometimes bloody stool.  My gastroenterologist (by referral) is so busy he can only see me at max. once every three months.  When I have an emergency I have nowhere to turn for treatment except my FP who does not really specialize in this area and people are not familiar with this disease in my country.

I feel really tired and ill and some days I can't function at my really hectic and high stressed job in export marketing.  My symptoms are many and quite distressing and depressing.  Upon being diagnosed my employers promised support but because they, perhaps, did not take the time to educate themselves about the disease my boss is now really beginning to give me grief about my sudden lack in energy and absenteeism and I fear they may take the decision to have me medically boarded and dismissed.

I am really happy about this forum where I can share my experience with others who are also subjected to living with this condition.  I feel very alone since I do not know anyone else who has the same disease.  My husband and daughter are very supportive but it's really difficult to always complain about the pain and how awful I feel.  I don't want to be a burden to them so I really need to find a vent.

I hope to continue learning and understanding this disease as all of this is new to me.  It is a frightening experience and I believe that this forum will serve as a source of inner strength and enable me to be an inspiration to someone else with Crohns or any other medical condition.

Sincerely,
Nicole


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## rygon

if youre having it as a sticky can we seperate other personal questions /  requests / thanks,  so the most important stuff is kept without make the thread too long / diluted?


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## Wish2BCrohnsFree

*New member but long time sufferer*

Hello
I am in my 40's and have Crohn's, mainly in the small bowel near the terminal ileum. I had symptoms for many years (mentioning them to my GP) but wasn't diagnosed until 2000 after chronic Anemia and a diagnosis of Osteoporosis prompted a referral to a GI spec followed by a colonoscopy. 

The TI was so narrowed, the GI could not put the scope thru to examine. A SBFT, (small bowel follow thru), showed subsequent strictures for which I will be undergoing surgery soon. I have had many blockages, and just as many trips to the ER (not too fond of that place!) so I have learned to be really careful what I eat and chew my food better. This has helped but my GI saying I was an 85% risk for emergency surgery has made me finally accept that I need to go ahead with the surgery.

I have all the usual yucky symptoms of Crohn's as well as the embarrassing ones. My family has been really supportive, especially my husband, although they don't fully know what it's like, they try hard.

I am quite nervous about the upcoming surgery, likely this month (Apr 2010) and have put it off for 2 years. Part of my anxiety extends from also dealing with the pain of Anykylosing Spondylitis and Fibromyalgia. A simple trip to the dentist increases my pain. I do not know what it is like to NOT feel pain, I have it 24/7 both in my joints and in the soft tissue areas.

So I am worried about the usual concerns, infection, scarring, further surgeries, but primarily about the PAIN during recovery. I a worried I will get hooked on pain killers or be really emotional after coming off them. Presently I take the maximum dosages of Tylenol (about 3600 mg/day) and about 600 mg of Ibuprophen a day and 200 mg of Tramadol. I finally succombed to taking Tramadol, to try to get some sleep at night and relax the muscles although I still wake up in intense pain during the night.

Would love to hear some positive thoughts from any in similar circumstances, or who have any words of wisdom!


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## GoJohnnyGo

Hey Wish2bCrohnsFree!

I have Ankylosing Spondylitis too!

Stay away from Ibuprofen. Not good for the gut.


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## bostitch7

Hiya I also am a mom who's daughter was diagnosed at 11yrs.  She is currently 13.  Original meds were Flagsyl (antibiotic)  way too strong only could take one day, Prednisone which was temporarily and currently she takes 2000 mg of Pentasa a day 4 pills  her bowels were completely full of puss when she was diagnosed, she had sores in her mouth, and extreme pain to have a bowel movement.  there are days she has 4 or 5 bowel movements and fatigue is a big issue for her.  Everyone has a different story but i have a lot of confidence in her pediatric GI dr.  I went with what he said right from the start even though i didnt like the idea of steroids.  We go to him every three months.  Good luck


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## canope

Thank you for this beautiful post. It makes me feel safe to be here.


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## lseibert

Thank you for the post, it's so true, all experiences are different. But, it's nice to know that you are not alone....
:Flower:


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## Dallies

Hi Iseibert, would you like to post your story in the, 'My Story' page so that we can welcome you properly x


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## lseibert

*My Story*

I will, I just joined and trying to figure how to get around...


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## Crohn's 35

lseibert...Welcome  Hey not to worry I have been here 2 years and still trying :wink:.  Go to the oringinal board and you will see Your story click on that and you will see a Post thread and tell us your story, let us know if you have more problems.  We dont bite, we are glad you found us:ysmile:


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## mfleming

nwtnurse said:


> Hi, it so nice to find a site where everyone is an individual as we should be and realising that just because we have Crohn's doesn't mean that we exhibit the same signs, symptoms, treatments, experiences.  One thing I have noticed that is similar to us all is the ups and downs that we tend to go through, also the constant feeling of being in the mode of is this an exacerbation....is this pain due to Crohn's....could it be hormones causing this flare up....I am sure it is something else and not Crohn's at all.
> 
> Ahhh blissful denial (what a wonderful phrase), which I tend to use a lot and then low and behold I should know better, as from out of nowhere the wonderful gut decides to let me know that it is present....lol.  I was diagnosed early 2006 at the age of 45 and needless not too impressed as I knew quite a bit about Crohn's due to my brother in law having it and not very well with it.  So of course was sure that I was going to be the same.  I am pleased to say that I believe I have a mild case compared to him and others that I know and feel blessed at this time.
> 
> Since my diagnosis and after lots of research, talking with lots of people, teaching my surgeon, that some alternatives can be helpful.....actually it is nice to have a surgeon that is prepared to listen and learn new things.....willing to try new things and not jump to surgery straight away.
> 
> I would like to acknowledge Kev regarding hormones do affect Crohn's as I did not think it possible until my surgeon said "Oh yes hormones can certainly screw things up"....I think that gave me some relief or was it that menopause is creeping up as well....oh well it just makes life interesting ....does it not?
> 
> I would like to say thanks for having me and I look forward some discussions etc.


Hi Nwtnurse. I'm new to the site so I haven't told my story yet but I have a question regarding the hormone thing you mentioned. I was taken off birth control pill in November last year (I'm 49) and have never had any peri-menopausal symptoms when low and behold I have go to the hospital in March with pain in the right abdomen. They diagnose it as appendicitis and go in to remove my appendix and I come out of surgery with a bowel resection which was sent away and diagnosed as compatible with Crohns. I haven't had a period since December so are you saying it's possible that there were hormaonal changes that could have affected my Crohns to come on. I never presented with any symptoms prior to March. I would love to hear your thoughts


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## mfleming

Hi Dave: your message above is right on target and should be posted at the top of the website for all to read everytime they enter the site as a reminder that everyone should be compassionate no matter what stage or pain level or medications etc individuals are at. I'll try to keep this as short as possible but here is my story:

After reading some of the threads on this site I fell fairly fortunate and am beginning to think I have a fairly mild case of Chrohns. I went in to the emrgency room in March of this year and was told I had appendicitis and needed surgery. They removed my appendix alright - along with giving me a bowel resection. They said when they got in there that the small bowel and part of the large bowel where they connect were so swollen they did the resection to so they could send it away and confirm if it was crohns. It was. I wasn't put on any medication except pain killers for after care as they figured they got it all with the surgery and would probalby not have another flare up for 15 years - I swear "docots quote". I was find until I went back to work 6 weeks later on April 19th. May 6th back in hospital for 5 days out for 5 days - back in hospital May 17th for 1 week so they decided to do a colonoscopy where they found swelling at the surgery site so the bowel opening was the size of your finger instead of a golf ball. Nothing was getting through which was causing a backup, hence the pain and vomiting. Put me on Prednisone and Imuran and went to see a specialist who increased the dosages of both. They had taken a smaple during the colonoscopy and the pathology however came back negative for Crohns so we are not sure if it is just surgery swelling or what. I take a stool softener every day and took Citrical before I started weaning off the Prednisone ( I learned from a post on this site that not taking vitamin D during the weaning process may help). As everyone can attest Prednisone side effects are hell (it was affecting my accuracy at work - I call it prednisone brain) so I made my doctor wean me off them (5mg every 5 days). I am down to 10 mg a day. I was down to 5 every 2nd day but I had a bbq on the weekend and ate alot of cream cheese so not sure if that set it off so dairy is on my possible list of foods to avoid. I went back up to 10mg for 5 days then down to 5mg for 5 days and 5mg every second day for 3 (under doctors advice). I'ts really the first incident I've had except for what I call a small stich of pain in the side that is very tolerable so like I said I feel fairly blessed. I had never presented before the incident in March. I feel for all the people whose pain and flare-ups are soo much worse.

I do have one question - since I have been weaning off Prednisone my toes have started hurting. It kind of a burning pain and hurts to touch the tips - not all the toes, mostly the baby or big toe and not always the same toe or at the same time. Has anyone ever heard of this.

I look forward to gaining info from this site and like you said, it just feels good to know you are not alone and that there are coping strategies to be heard out there.


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## Crohn's 35

Hi Mflemming, Weclome!  Prednisone can cause whack of problems and I had problems with my feet and muscles there are some others who can comment.  It is a great short term med but needs to be replaced with something to keep flares down.

It would be great if you could of posted your story on a YOUR STORY thread, that way everyone can meet and greet you!!!  Some people get lost on other threads.  Glad you joined us, many great people and caring individuals!  Join us!


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## mfleming

*New to Forums*

Thanks Jettalady. I'm new to forums and how they work. I will try to find the MY STORY place and post it there. Can you tell me where I'm to locate this place. Looking forward to the discussions. Michele


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## naen

Thanks for the post, it was well written and said everything that should be said.


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## tflock

great job summing it up. Everyone is different and deserves to not be made fun of or told to deal with it. Could not agree more.


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## Domsmom

Thanks so much!  This sums up how I feel about it...hoping no one judges my disease and I won't judge theirs


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## adb

very well said!!!


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## getbackup

Nicole said:


> Hello Mike,
> 
> My name is Nicole Phillip-Marcano from Trinidad, W.I. and I was diagnosed with Crohn's of the small intestine and Colon four (4) months ago.
> I have since been on Pentasa, antibiotics and pain relievers, Xtendlife fish oil, sulfasalzine and recently, prednisone - 40mg per day.
> 
> I have been having quite a bit of pain on my left abdominal and sometimes bloody stool.  My gastroenterologist (by referral) is so busy he can only see me at max. once every three months.  When I have an emergency I have nowhere to turn for treatment except my FP who does not really specialize in this area and people are not familiar with this disease in my country.
> 
> I feel really tired and ill and some days I can't function at my really hectic and high stressed job in export marketing.  My symptoms are many and quite distressing and depressing.  Upon being diagnosed my employers promised support but because they, perhaps, did not take the time to educate themselves about the disease my boss is now really beginning to give me grief about my sudden lack in energy and absenteeism and I fear they may take the decision to have me medically boarded and dismissed.
> 
> I am really happy about this forum where I can share my experience with others who are also subjected to living with this condition.  I feel very alone since I do not know anyone else who has the same disease.  My husband and daughter are very supportive but it's really difficult to always complain about the pain and how awful I feel.  I don't want to be a burden to them so I really need to find a vent.
> 
> I hope to continue learning and understanding this disease as all of this is new to me.  It is a frightening experience and I believe that this forum will serve as a source of inner strength and enable me to be an inspiration to someone else with Crohns or any other medical condition.
> 
> Sincerely,
> Nicole



Thanks Mike. 

By the way Nicole.. Nice post I know what you mean. 
Hello all - A new member and hopefully i can contribute as well as seek for some support. I been diagnosed with crohns for 4 years but never took time to deal with it from a mental and physical aspect of it. This last year, I had 3 sessions and it's now taking a toll on my body Phsically and MENTALLY! ahh... Ulcers Ulcers pls go away so I can go out and play. =) 

Nice to be a member. 

BW


----------



## linder553

I love how you mentioned that this disease is different for everyone...so true.  I have two friends that have Crohn's Disease including myself and all three of us have different symptoms and pain in different regions.  One of us was just diagnosed and hasn't started medication yet but that doesn't mean that he is not in pain and doesn't feel what all of us are feeling.  I have had crohn's for two years and haven't had surgery yet (Knock on wood).  I love this forum and hope people continue to write everyday.  It's nice to finally feel like I belong somewhere cause even though we don't know each other we are all one big family!


----------



## homeschoolmom

Hi,

I am a married (26 years), 51 year old home school mom of a wonderful almost 17 year old young man.  I was diagnosed with colitis when I was 12 years old and over the years this has progressed into not only colitis but Crohns too.  I was first diagnosed with Crohns when I was 3 years old, but am sure I had this DD much longer than that.  I had a resection in 1999 and lost 1 1/2 feet of my small intestine.  I struggle every day with arranging my life around the bathroom, my joint pains and fatigue.

I am now awaiting approval to try Humira, as nothing else seems to be helping.


----------



## Crohn's 35

homeschoolmom said:


> Hi,
> 
> I am a married (26 years), 51 year old home school mom of a wonderful almost 17 year old young man.  I was diagnosed with colitis when I was 12 years old and over the years this has progressed into not only colitis but Crohns too.  I was first diagnosed with Crohns when I was 3 years old, but am sure I had this DD much longer than that.  I had a resection in 1999 and lost 1 1/2 feet of my small intestine.  I struggle every day with arranging my life around the bathroom, my joint pains and fatigue.
> 
> I am now awaiting approval to try Humira, as nothing else seems to be helping.


Hi there, welcome to the forum!  That is such a long time and a very young age to have this disease!  I know about living your life around the bathroom and coping with pain.  I have had Crohns symptoms since I was 15 but got a diagnosis at 32...been almost 20 years since.  I have tried all meds, including Remicade, and most do well on it but I became allergic.  Humira did work for me for a while, it could be just the med you need for you!  We dont have Cimzia here so if it shows up here I may try it but my Gi doesnt have faith in it for me.  My body hates drugs.  

You maybe should write your own story on a YOUR Story thread as your story could get lost in here.  I look for newbies but others may not see your story.  Again, glad you are here! Let us know your story and hope the Humira works for you!:smile:


----------



## crushingcrohns

Good advice.  Thanks


----------



## Gunny

*Thanks*

This should be a mandatory read before you join this site. Outstanding, and well said!


----------



## mayhavecrohn's

*i am new here and i am scared to death about maybe having crohns*

i am new here and i am scared to death about maybe having crohns my reg doctor is almost 100% sure i do have it i already have enough things that cause me chronic pain and crohns is the last thing i need


----------



## lovehimtodeath

im new here. im on here searching for a way to support my best friend and boyfriend. everyone's story is different, i couldn't agree more. my boyfriend wont talk about his crohns much because he feels like a burden to others. please help me, i posted to the "your story" section, its a post called "I NEED to help." I really need a reply. thanks so much.


----------



## Fairyelements

Thank you! I feel at home already.


----------



## paperbackbutterfly

As a new member who has had very little contact with other Crohn sufferers I am very interested to read all the posts and I think you are right.  It is easy to dismiss other peoples experiences as I feel I know what it is like to live with Crohns on a long term basis.  This site is teaching me alot.  It appears that it is different for different people.  I am used to living with it and, i feel I am quite well adjusted.  I can function quite well despite the drawbacks and problems.  I hope that I can add something to the forums, make new friends and maybe give hope to some of the newly diagnosed Crohns family.  'Life is what you make it'.


----------



## carolann

not sure how  to use  the  forum


----------



## carolann

mayhavecrohn's said:


> i am new here and i am scared to death about maybe having crohns my reg doctor is almost 100% sure i do have it i already have enough things that cause me chronic pain and crohns is the last thing i need


have you had a colonoscopy ???


----------



## nene51

lseibert said:


> Thank you for the post, it's so true, all experiences are different. But, it's nice to know that you are not alone....
> :Flower:


I also, don't understand what causes my pain, but my doctor just told me that it was part of having crohn's. I love this forum, didn't know anything like this assisted. I've  had crohns for a very very long time.  They never knew what caused it, and there's no cure for it. But this medication I take called Asacol 400mg, might be one of the best. But, overall I stll have flare ups. And seeing what to eat and what not to eat(which is everything you can't eat), we will always have problems.:stinks:


----------



## zhaoj22

Thank you for the post, it's so true, all experiences are different. But, it's nice to know that you are not alone.... I'm new to the site so I haven't told my story yet but I have a question regarding the hormone thing you mentioned.


----------



## brooke206

*fistula surgery*

Can anyone give me advice or share their experience regarding success or consequences of surgery to repair fistulas Ihave had discharging abdominal fistulas for 6 years now they are painful, uncomfortableand restricting, the only treatmentwhich has made any improvement was Infliximab infusions my consultant is reluctant to prescribe more infusions and is now suggesting surgery, but hasn't given any assurances that this will be successful does any one have any advice?


----------



## Grumbletum

Hi Brooke and welcome. We have a Fistula and Abscesses subforum which you'll find on the forum main menu so you'll find others with similar problems and possibly advice there  . Have a surf and feel free to post questions there: there is usually someone going through the same thing, unfortunately.


----------



## scottmyster

HI Mike, i am a member of the forum and they welcomed me like family and the forum has a great  ideal of great people and a great world of knowlegde. i have had crohn's for 21 years now and still fighting it. but , you summed it all up in your post. which is great. way to go mike. best wishes 

scott


----------



## WhatTheHeckHappened?

Wouldn't it be great if we could all get together look up at the sky and yell "Enough!" then it could stop, then Chrons will tuck tail and run.
Oh well, since we can't do that, at least we can support eachother


----------



## Jenn13

*Good laugh ...*

:ylol:





LeafyOYT said:


> yeah the pain sucks.... and the amount of toilet paper I go through is scary!


I have had cd for 17 years i should own stock in charmin !!!


----------



## kulou

yeah the pain sucks.... and the amount of toilet paper I go through is scary!


----------



## crushingcrohns

*That's the Truth!  Couldn't have said that better!!!*

Thanks for posting that.  Very well said.
Sometimes it's necessary to just remind people and bring people to the basics about what these communities and forums are all about.  

I came to these forums and joined support communities because my support and understanding from friends and family, were non-existent.  I literally had no support, outside of online forums.  People need support and to be heard and need to also know they are far from alone with their disease and that there are people that will listen and accept you where you're at and as you are.

Being shunned or having someone say "deal with it" or downplaying concerns would be just ANOTHER slap in the face.  That's the last response a community member needs from a place that is supposed to be safe and supportive.

My family are beginning to understand, but at one time, I was completely misunderstood and had NO support from them.  These forums were my ONLY support that made me feel like not such an outcast because I received understanding and encouraging words from sufferers like me.  Your words matter and will effect people - either in a positive way or negative way. 

Being compassionate and encouraging will help people (if anything) and something positive that you say may actually make someone's day. That's why we should try to the best of our abilities to be kind in our responses and provide encouragement.  All the negativity that comes from the ignorant and misinformed people that we see on a daily basis will continue until the light bulb goes off someday and they begin to learn the reality of the disease.  Until then, these forums are more than a blessing and needed for support and as a healthy outlet to express concerns and feel heard.  :hug:

:heart:


----------



## thecrohn

I'm so glad you posted this blurb / disclaimer.  Treating IBD is so different on a person by person basis and there's no "right answer."  It's been hard explaining this to my family and friends- and everyone has an opinion!  I'm really happy to have stumbled across this forum.


----------



## phigould1986

Thank you..I am new here and was diagnosed with crohns last year and am still very scared of what the outcome will be,But im trying to let other family members know what i am dealing with and this may help...Thanks for the support


----------



## Gsto86

Really great post!


----------



## erinever

Great tips, Mike! Thank you for posting


----------



## goldbrick911

*Excellent Incite, Sir!!*

Your empathy and incite is impressive!


----------



## CLynn

Excellent, great job!


----------



## Concern411

*thank You*

Mike you are a scholar and to sum everything you said is, we are connecting communities and helping them to live. We are our own support group that should understand any story that hits this air wave. WE ARE ONE.

Sorry I've been away, but I am a soldier in this army of Crohn's and will share with you all in the near future. My wish today is for everyone to have a good day.  Talk to you soon


----------



## Concern411

Please forgive my spelling.


----------



## goldbrick911

Thanks to all of you for your support.  Some of the info. I share is highly emotional and private.  I do it because I really feel for the young people who have been "body slammed" (no pun intended) by this disease, just when they start thinking they can master the complexities of this world.  REMEMBER, and listen, doctors and politicians, every time this disease is allowed to "plow up" our bowel lining like a field, we get one day closer to an obstruction.  You have NO RIGHT to tell us NO to ANY tool that helps us master or temporarily control this disease!!  Many blessings to all my brothers and sisters!


----------



## punkgirl

I feel so welcome here after reading this.  Great post, TY


----------



## Diamondinside

Hi. I am not a parent, but I did get diagnosed with Crohns when I was 10. It can be pretty difficult growing up with the disease, emotionally and physically. It's a very scary thing to deal with. And like you, I don't like the idea of taking medications. When I was young they put me on everything, and most of it was trial and error. The trick is really trying to find what works for you. Unfortunately, everyone with this disease is affected soooo differently it's hard to just give or get advice. I also have crohns in my esophagus as well as rarely suffer from diarrhea (I'm more likely to just stop going). My mouth is affected greatly from it; I get ulcers in my mouth weekly and if I get sick or even just stressed out I'll have quite a few at once.  I really have to take good care of my teeth and gums and brush my tongue really well. 

I also had a really difficult time with my monthly cycle growing up bc of the Crohns where I would have a flare-up every cycle. For me birth control pills really straightened everything out, BUT I had some really bad reactions to some that actually put me right into the hospital so be careful!


----------



## revaro

Dear Diamoninside...You certainly are a DIAMOND. Thank you for sharing your story. And to all others.

 I have come to realize that Crohn's affects so many people, which I didn't before, and that it's just not a select few who have the disease -- often described as Jewish people from Eastern Europe heritage (which I am),when Googling "What is Crohns." Seems so many of us out there.

 I was diagnosed some 30 years ago, at that time only had occasional flair-ups. Thought it was GI distress. It wasn't until five years ago when it was discovered I had 3 lb. benign mass -- I was one sick "puppy," operation successful. Living alone it wasn't easy post-surgery but I have a good support system (friends). After that I thought I was "Scot Free," stopped taking meds after a year, and continued eating whatever I wanted not realizing Ol' Crohns would rear its ugly head. Crohns got to me two visits to Eroom, tests and medication up the WAZOO. I'm one of the lucky ones who has been able to function with few side effects. For that I am grateful.

Thank you everyone for sharing your personal stories. It's healthy for us to be able to express how we feel, how we're doing, etc., especially to those who really know and care what it's like to have Crohns Disease.

ro-ro

Wishing ALL THE BEST to everyone.


----------



## hunnibunny

my mum and I both have crohns, we are both on the SCD diet and my inflamation on my last visit to hospital was greatly reduced! infact my gastroenterologist was amazed and said it was more or less the same as a person without the disease! I started the diet about 5 months ago and after just 2 weeks on the diet I went from going to the tolet 20 times a day(unless i took my lopermide hydrochloride) to just 1 - 2 'normal' bowel movements a day(I DO NOT HAVE TO TAKE THE DIARRHEA TABS ANYMORE  I have....i am 95% pain free too! the fact that my mum has had a similar improvement after following the diet with me is clear evidence that FOR SOME PEOPLE the SCD diet is very benificial. There is a list of legal foods like chiken, fish, any vegtable except gasy ones like brocilli(unless you can tolorate it) any fruit, extra virgin olive oil only! honey...there are some great recipes its not as hard as you think..I grate corgettes to make pasta cook it with some onions and fresh garlic squeeze of lemon juice and its amazing..i can eat tons of it...banana pancakes made with nut flour and topped with blueberries  roasted peppers with tuna.. sorry to ramble on.. I just had to leave a message because I know how terrible this disease is and after 2 years of misery(my mum for nearly 20 years ) we are living life again. Check out the 'legal and illeagal list of foods I know it sems like there is a lot you CANT eat but there is an awful lot you CAN!! you have to change your way of thinking...if you can PLEASE give the diet a go..theres nothing to lose ..we also both take digestive enzymes and Acidophilus complex  xxx


----------



## BadGut

Jojg said:


> Hello.  My 11 year old daughter has just been diagnosed with Crohn's.  I am still in the denial stage as I don't see her symptoms as that bad.  I worry that the medication they will recommend will make her feel worse than she does right now.  I am wondering if anybody has had similar symptoms and what has happened over the years?  She currently is anemic and hasn't grown much in the last year, has inflammation in her stomach, esophogas and a little in the colon; but also has a few ulcers in different places.  The one that bothers her is in the esophogas as it hurts a little when she eats.  She doesn't have any diarrhea or stomach pain.  Am I delusional to think this will be the extent of her symptoms?  I so desperately want her to avoid long term medication and its side effects.  Is it possible to monitor the inflammation by taking blood tests every few months and being careful with what she eats?  And then, if it gets out of control, take the meds?
> 
> Where should I post her story?  I'm not even sure this post will work.  I've never posted on any website!
> 
> Thank you in advance for your help, anybody.


Jojg--welcome and I'm glad you are finding some good advice.  I was 13 when I was diagnosed with Crohn's and I can tell you it was very difficult.  That was the age you "don't want to be different" but here you are with a disease that makes you different.  Your support will, probably already does, help your daughter sooooo much.  My mom helped me find the most important message in all of the ordeal and please, Let her know that she has a choice she can control the disease (hopefully...I think we all find ways of doing so) or the disease can control her.  
I was put on Predisone 50 mg a day and it put A LOT of weight on me...mostly water.  But I was finally able to go do something without finding the closest restroom!  But I can still, like everyone on here probably can, tell you where all the bathrooms are in all the stores around town.  Anyway, you and your daughter have all of us to help you out in anyway we can!


----------



## 723crossroads

*Dear badgut,
  I am so sorry for what this must do to you as a mother. I am a grandmother and would hate to see my grandchildren go through crohn's or Ibs of any kind. I have crohn's and I am able to control it when I take my meds and stay away from fried foods and things that cause me the runs. You should start a food diary and see if you can figure out what causes your daughter's symptoms to worsen and then avoid those foods. That's what I have done. I cannot eat fried foods or popcorn. I avoid whole nuts but can tolerate peanut butter. Everyone is different, so go by that as much as you can. god bless and I hope this has helped. Love, Teresa*


----------



## KevinHumphries

Last night i wrote a post on the pain and addiction thread, but im more than happy to share my thoughts directly to you about this. Chronic pain is something that nobody should have to deal with, not when there is medication out there that can help you. I understand your concern about addiction, but there is a big difference between addiction, and dependance. I am dependant on my oxycodone, but i dont let it control my life. When taken properly, and by that i mean only taken for pain relief, not to relieve mental pain, or to get high, there is very little chance that you will become a addict. My main point in what i wrote last night was that we have a chronic disease, so if you end up taking them, there is no reason to quit. Therefore no reason to worry about becoming dependant. You deserve to have a normal quality of life, one that doesnt include chronic pain. And if you're worried about feeling loopy all the time, dont, that will go away after a little time to adjust. We all deserve a good quality of life.


----------



## lseibert

Kevin, 

You are so right, thank you for the post!

:hug: Be kind to yourself......


----------



## betteroff

You have a mastery with words. It could not be said better than this. The worst pain you have experienced IS the worst pain. It is not a competition of who is sickest. That in itself is sick in a different way.


----------



## MaggieMay

New here. I appreciate all of the post.


----------



## lizbeth

Hi Kevin,

Your post is amazing, I've been on a cocktail of pain relief for over two years to manage other issues yet when I was in hospital before Christmas I was made to feel like a junkie for requesting some meds, its not right that staff can with hold something that is prescribed by a GP, I was so glad to get home and manage my own meds, they even took me off my regular insulin and I had to fight to get back on it! I completely agree with what you say about not being worried about addiction, we need pain relief in order to function but as long as we are sensible about it there shouldnt be a problem.

Im new to the forum and so far I think its been brilliant, thank you everyone.


----------



## Jim (POPS)

thank you for that message, very good. Wel said


----------



## martinF

Thank you - wise words


----------



## lizbeth

Thank you and you are very welcome :ybiggrin:


----------



## ThankGoodness

This was the first time I read this.  This was great, thank you.


----------



## Reiki2

Hear hear mikey,

I can still remember what it was like when I was 16.  Then I was classes as a child who ' didn't need to know' the details. That was my parents job. All well meaning but I was sooo scared and didn't really know what it was all about. Most of my knowledge was gained through trial and error.  I know more now but after having numerous investigations as a 16 yr old it left me heading in the opposite direction when someone said oscopy!

Thanks for getting it all into context.


----------



## Jan Bernstein

I enjoyed what you wrote. I have a daughter who id 19 diagnosed with crohns. She has had one surgery, (diagnosed last year) and is now so depressed. Since I suffer from derpression I can certainly relate, but my heart is brreaking for her. She is in college but does not attend classed, too ill still. She won't drop out because she says that the disease then won. She is almost out of money for college and my heart is breaking. I can't afford to help her out financially. I am drained and don't know what to do. She is seeing a therapist that has stated treating her with meds, but so far no good. Help, pplease


----------



## 723crossroads

Jan, I don't know how to help you but I can say that worrying is only going to make it worse for you. I went thru years of worry over my son and daughter who were addicts. I ended up with cancer and crohn's. Don't do this to yourself. I have found that turning all my cares and children over to God and trust him to work it out helps me so much. He is much bigger than us and our problems. Believe in Him and trust that He will eventually work it out. 
I hope very much that your daughter does a complete turn around and can finish her schooling. I will pray for her.:ghug:


----------



## Amcco

Hi there! Thank you for your words of sensibility and sensitivity. I agree wholly that ones disease is as individual as individuals. The old adage of : thinking of others is a great example for living. Our mutual journey has indeef many stops and one could be stranded at any one stop for any amount of time.
When they say: that this disease is debilitating-how rigjt they are! Depression, anxiousness, fear, tiredness, procrastination etc are in my experience only a handful of the negative side-effects of this disease. 
I would like to thank you's for accepting me into this fellowship of IBD sufferers and look forward to offering my support to yous all!!!
Thanks Anthony Amcco


----------



## Miekske

Thank you Mike. You described some issues I met the last period when I was telling about my Crohn to family and colleagues.  They say they understood and some say that there are people who even more experience more sickness than I am like cancer diseased patients.  Felt misunderstood then. There's a awful lot of misunderstanding out there, so that's why I became to this forum.  Here are people who know CD from the inside, how it feels and how it affects your daily life so much. And when they read your text in the topic start and feel it by heart this forum will be a place of understanding and a place to find the courage again to cope with everydays life with CD within!


----------



## mmelmarc

Anyone use Collidal Silver to help with Crohn's


----------



## Ginamackeyhawk14

Although, being diagnosed with Crohn's almost 25 plus years. I was in remission for 18 of those years. I am trying to get reacquainted with this disease! I am new to this forum and am very appreciative to have found such a wonderful support group in all of you! 

I loved your post! It makes me feel so very welcomed!!


----------



## ronroush7

Welcome, Gins.


----------



## ronroush7

I mean Gina

 2


----------



## DamnitCrohns

Great post, this forum really is a ridiculously valuable place for so many reasons. It's full of a wealth of information, experience and just as importantly, supportive people. 

Be good to each other guys, we're in this together!


----------



## Cascadia

Thanks for posting, this is a great message as a newcomber to this online support community.


----------



## justsomeguy

Thanks


----------



## chicky402

It is great that everyone has a different experience. This is the reason I signed up for this forum. I just was diagnosed with CD and so far am enjoying reading and gaining new insight into how people are coping with CD. A special thanks to the person who created this site.


----------



## mdd

We are like family!  :ghug:


----------



## Stevi (:

Well put


----------



## Ali29

I also am so thankful for the site!!  :hug:


----------



## ronroush7

Ali29 said:


> I also am so thankful for the site!!  :hug:


I am also thankful.


----------



## lisadc1

Thanks...as a newbie to this site I am looking for answers. As a newbie to the diagnosis of both crohns and colitis and feeling overwhelmed with medications that keep getting loaded on me compounded with extreme fatigue, I am about to completely give up.


----------



## ronroush7

Don't give up.


----------



## lacey2

LeafyOYT said:


> yeah the pain sucks.... and the amount of toilet paper I go through is scary!


Hi, there is a group call the inconstance support group, generally thru the public hospitals.  They will supply you with pads, the neat longer ones, and also money for the extras required, like toilet paper.

I have received these benefits, but, not knowing where you live, perhaps you can just try it out and research it, and there could be help.

I would like to send a hug, I know the pain, and the runs, try like 40 years plus.  No doctor could find the answer.  Finally I started asking a lot of questions and making a lot of noise about my condition.

Finally, after a fesus test, they get a calprotenia result, which is counting the amount of inflammation in the bowel from the stool.

Normal is 50
my first was 286
second 398
third 3000

Finally they were listening, I'm now on chemo medication to reduce the inflammation and hopefully the pain.

Ask the doctor for the fesus test to get the calprotenia result and you will be on your way to feeling better.


----------



## lisadc1

What is the medicine you are taking? Mercy, your numbers are high! Prayers for you lacey2!


----------



## lacey2

Hi, the recent medication is the one listed on the left side, consider a chemo therapy drug.  Also, note, there is a product called GASTRO STOP.  It will stop the runs immediately, does not have an opiate base and not harmful.  Like the specialist said, you get bananas from the results.

Don't give up, find a doctor who will listen to you and you are on your way.  Take care.


----------



## leezapeza

I agree so very well written and has given me great hope because when I was first diaganosed a couple of weeks ago I cured because a friend of the family has it and she has had everything taken away and at the time I could see my self like her it was very upsetting but coming to this forum has helped me so much thanx to all that have shared


----------



## lacey2

Thank you for your prayers.
I'm taking several medications, mainly for pain relief today.  I had several pain free days, then after a BM today, wham!  But some of the medication would be flagel, and colofac, including the low dose chemo drug.  I was on a higher dose, but had to stop after 3 weeks due to heartburn. 

July 7 Calprotecin result 900, came down from 3000, which is great but it has to get better.  Will see the doc in 3 weeks.  Although he is great as I can e-mail him and he sometimes will respond regarding medication.

The GASTRO STOP HELPS FOR THE RUNS AS WELL, 

GOOD LUCK TO ALL, DON'T GIVE UP.


----------



## sue llewellyn

Wish2BCrohnsFree said:


> Hello
> I am in my 40's and have Crohn's, mainly in the small bowel near the terminal ileum. I had symptoms for many years (mentioning them to my GP) but wasn't diagnosed until 2000 after chronic Anemia and a diagnosis of Osteoporosis prompted a referral to a GI spec followed by a colonoscopy.
> 
> The TI was so narrowed, the GI could not put the scope thru to examine. A SBFT, (small bowel follow thru), showed subsequent strictures for which I will be undergoing surgery soon. I have had many blockages, and just as many trips to the ER (not too fond of that place!) so I have learned to be really careful what I eat and chew my food better. This has helped but my GI saying I was an 85% risk for emergency surgery has made me finally accept that I need to go ahead with the surgery.
> 
> I have all the usual yucky symptoms of Crohn's as well as the embarrassing ones. My family has been really supportive, especially my husband, although they don't fully know what it's like, they try hard.
> 
> I am quite nervous about the upcoming surgery, likely this month (Apr 2010) and have put it off for 2 years. Part of my anxiety extends from also dealing with the pain of Anykylosing Spondylitis and Fibromyalgia. A simple trip to the dentist increases my pain. I do not know what it is like to NOT feel pain, I have it 24/7 both in my joints and in the soft tissue areas.
> 
> So I am worried about the usual concerns, infection, scarring, further surgeries, but primarily about the PAIN during recovery. I a worried I will get hooked on pain killers or be really emotional after coming off them. Presently I take the maximum dosages of Tylenol (about 3600 mg/day) and about 600 mg of Ibuprophen a day and 200 mg of Tramadol. I finally succombed to taking Tramadol, to try to get some sleep at night and relax the muscles although I still wake up in intense pain during the night.
> 
> Would love to hear some positive thoughts from any in similar circumstances, or who have any words of wisdom!


Well are you sure you should be on ibuprophen?  I was told not to take it.  I have Crohn's dx in 2009.  The gastroenterologist said I probably had Crohn's for 10 years previous to my surgery in 2009.  My stricturing was in several places - the worst was near my stomach in the small intestines and then 4 strictures in the small intestines further down and thenlast part of the small bowel.  

To solve the first stricturing, the surgeon found the first bit of healthy intestines and tacked it to the back of my stomach.  You see my strictures there went on for 10 centimeters.  It was solid scarring.  The next smaller strictures were treated by inserting a balloon into the intestine and then stretching out the stricture.  I had a small piece of intestine near my colon resected.

Regarding pain after surgery:  they put me on morphine which dropped my blood pressure really low.  No one was concerned about it except me so I asked to come off the morphine and be put on tylenol.  That was a dilemma since I had a tube in my nose and I couldn't swallow pills.  My surgeon was responsive and put me on children's liquid tylenol.  I was fine without the heavy duty pain killers - but I don't have the other health issues that you have.

It took me a long time to recover from my surgery.... maybe 6 months.  I couldn't eat properly so after about 3 weeks I was put on TPN which is food in a bag that I was given intravenously at night.  I had that food for about a month and by then I was able to eat baby food along with some soft adult foods.  

Now I am doing much better and eating healthy food that is easy on the digestive tract - on Remicade and have been since Sept 2009.  I also have begun Wechol for symptomatic diarrhea.

I'm not sure that this is reassuring, but I am sympathetic.  I can remember the fears before surgery.  

At least you know for sure that after surgery you won't have bowel obstructions.  Good luck and if you need more from me, you can find me on here.


----------



## lacey2

Hi everyone
Well it turns out I do not have |Crohn's but CHRONIC INFAMATORY TEPHYLIS.
So a whole new ball game.  Has any one else herd of this problem?  Please advise treatments, foods and anything else that stops the pain after a BM.  I mean Chronic Pain.

The runs have slowed down due to GASTRO STOP.  Anyone with the runs pleas try the Gastro Stop. It helps no longer Lomitil which is an opiate:ywow::ysmile: or has a component in it.


----------



## lacey2

Do I have to withdraw from the Crohn's forumn now?


----------



## Muppetgirl

lacey2 said:


> Do I have to withdraw from the Crohn's forumn now?


Hi Lacey, sorry to hear of your dx. Hopefully someone will be along soon with some advice. In relation to your question above I personally would hope not. If you feel that you have common ground with the folks here, then I would stay. This forum is open to those with 'other IBD'. 

I have endometriosis which the World Endometriosis Society defines as an inflammatory condition characterised by endometrial lesions outside the uterus. In my case it has severly affected my bowel. So I don't have IBD in the traditional sense but like you I have inflammation in my bowel which cannot be cured. So I am here as I this is the only place I've found others who understand. 

I was tentative when I joined, but I was welcomed. Obviously I don't respond to posts about things like certain treatments I know nothing about. But I battle with pain, and D daily as well as upper digestive problems, am on a low residue diet, have a bowel obstruction, have had repeated bowel surgery including resection and complications from it, lots of tests and investigations inc colonoscopies and I know what it's like to have a disease that causes a trail of damage and overtakes your life.

So in my humble opinion you should stay if you want to. I had never seen this post before, but I felt the spirit of the original post was be kind to one another and cognisant of experiences different from our own. So in that spirit I say welcome. :hug:


----------



## DustyKat

lacey2 said:


> Do I have to withdraw from the Crohn's forumn now?


No Lacey you don’t. :ghug:

We have had a number of people come here undiagnosed just as you have only to find that when they do get the answers they seek it is not IBD. In the meantime they have often built up a rapport with others here.  

Intestinal issues are very often difficult to deal with and talk about with family and friends IRL and we totally get that so it can be a breath of fresh air to come to a site like this and speak openly and freely with like minded people. 

Anyone with intestinal problems is welcome to hang out here. We may not have the answers you seek but we can offer support, understanding and friendship and there are often crossover of symptoms, treatments and tips. Just as you may learn something from us we may well learn something from you.  

I will offer one suggestion to you though, as this is a thread started by Mike you will find that posting here will result in your questions likely going unnoticed as they tend to get ‘lost’ in threads like this. It would be better to move out of here and start your own thread on the main Your Story forum and move on from there to other areas of the forum as the need arises. 

Good to hear you finally have answers and I hope lasting relief soon follows. Good Luck! 

Dusty. xxx


----------



## lacey2

Hi, glad I found this site.  My story sounds like many of the other stories I'm reading about.

Yes, endometriosis since age 10, after first child a fistula developed and had to be repaired. Age 38 complete hysterectomy, yet always the pain.  So, we finally found out why, and I'm following thru with the doctors advise, finally.  After many questions I'm getting answers.

Thank you all for the support..


----------



## iblack06




----------



## Margaret234

Wow! The amount of love and support is truly phenomenal! I can only believe this is due I the special nature of the disease we all go through. Although we experience excruciating agony and debilitating pains and situations, I feel we all have a better affinity for physical pain itself and we are thus more appreciative and empathetic in life. 

I have to say, reading through these posts has both given me a sense of pride and support for others and what thy have been through, a tremendous sense of sympathy for cases like mine, and yet also a feeling of guilt when believing that my pain is the worst in the world. I now know others have experienced the same and worse pain than mine, and that I am not alone in the truest sense of the word. 

I am worried, however. These spasms are taking over my life and control just about every aspect. I'm no longer myself - sometimes I feel trapped inside my own head, and my body is a prison that I cannot escape. I'm praying that I have strictures so that they can be removed and I can live again - however, here there are stories of recovery after a strictureplasty, and that many cannot eat, are even worse, etc. I feel scared for my future if this is the future I am promised - one of pain, of continuous operations, and so on. Are there any success stories after a strictureplasty where there have been NO MORE SPASMS?


----------



## carlbeggins

Well said, new here but I'm looking forward to diving into this community!


----------



## krsalmon

Hello! I work for a Consulting firm that is doing some research on Crohn's Disease and Ulcerative Colitis. We are looking to do a compensated 30- 45min phone consultation next week. I am looking for patients:
-Currently live in USA
- Between ages 20-49
- Diagnosed with Crohn’s disease (CD) or Ulcerative colitis (UC)
- Being treated by a Gastroenterologist, and visited your doctor less than 6 months ago
- Are currently taking Humira
- Part of some sort of advocacy or support group 
Please email me at kristin.salmon@atheneum-partners.com if you are interested! 

Thanks! Take care!


----------



## Heather M

erinever said:


> Great tips, Mike! Thank you for posting


Hi, I am new to the forum. How do I post a question or concern?


----------



## Heather M

Hell, I am new to the forum. How do I post a question or concern on here?


----------



## Heather M

Hello, I am new to the forum. How do I post a question or concern on here?


----------



## Heather M

Ok, I think I figured out how to post. My 12 year old son just got diagnosed with Crohn's.  He has been dealing with chronic diarrhea for a few years. I kept addressing it with his pediatrician, but they always brushed it off like it was other things. When we moved out of town about 6 months ago, his symptoms got increasingly worse and that's when he started loosing weight. He has always been thin, but I thought it just runs in the family. He went from 74 lbs to 64 lbs. His new pediatrician ran lots of blood tests and couldn't figure out what was wrong, but he had low iron. I demanded a referral to a Gastroenterologist. Looking at all of my sons test results and hearing all the symptoms I told him he had, he said it sounds like Crohn's. Colonoscopy confirmed it was Crohn's. The doctor ordered him to drink pediasure to help the ulcers in his intestines heal and allow him to absorb nutrients again. My son absolutely could not drink the Pedisure. It was so grotesque to him, he threw up trying to make himself drink it. He was so malnourished that I had to take him to the ER. They had to put in an NG feeding tube and he was on it for about 6 weeks getting 7 cans of Pedisure a day. His appetite increased tremendously and hardly ever had a loose stool. He gained about 26 lbs, bringing him up to a whopping 88 lbs. He is now off of the NG tube and was tapering of the Prednisone steriod from 10ml down to 2ml. Immediately the symptoms of the diarrheah returned and he lost his appetite again. The doctor told me to continue prednisone and increase it back up to 10ml, and if after 3 days he still has symptoms, to increase it to 10ml TWICE a day (which to me seems like a big jump.) He said that the Mercaptapine (6mp) can take 3 months to work and the steroid will help him in the meantime. So, 
he is back on the steroid and is getting his appetite back, but is still having diarrhea. A concern I have now is that his cheeks are puffy and tender. I know they are puffy from the pediasure and weight gain. But the other day, my son told me that they are also sore and tender. I can't find any info on this and haven't been able to get ahold of the doctor yet. Has anyone heard of or experienced this???


----------



## Eridon2002

Prednisone causes "moon face"  Swelling of the face.  I got it when I was on prednisone, however I don't remember it being tender but I didn't really poke at it.  It will go away slowly when he weans off the steroid.  There is a sub forum for Parents of Kids with IBD.  There are a lot of parents going through this with their children and it could be of help to you.


----------



## ronroush7

It is probably from the steroid
By the way, welcome to the forum.


----------



## Strugglerer

Hello, 
I have been suffering with stool secretion for last 7 years, it is tiny amount of stool (dont know whether it is pus, mucus, water or stool), however, i never have smelled it, neither anybody around me in office or at home.

I have consulted with Gastro, Internal Medicine, GP, psychiatrist, neurologist, psychologists and not doctor could helped me out.

I started to google the symptoms and found it rectal leakage, crohn, fecal incontinence. 
i don't know which one of them i am having, it could be anus cancer as well. 

I don't feel any pain anywyere. 


Pls help.


----------



## ronroush7

I don't know the answer but I might keep pushing with a doctor until I get an answer.  I wish you the best.


----------



## Heather M

Thank you very much guys!!!


----------



## Alliesavage

mikeyarmo said:


> Hi everyone,
> 
> I just wanted to put this down as it is important for *all* of us to remember as members in this community.
> 
> While we are all connected through our affiliation with Inflammatory Bowel Disease in some way, we all have a different experience with it. There are not even simple categories that can organize us all, as the amount of experiences ranges so heavily. There are some of us who have had this disease undiagnosed for a long time, but only recently have been diagnosed, those who have been diagnosed for many years and those who are recently diagnosed. There are some of us who are not even sure if they are diagnosed yet. As anyone who has read several of our personal stories with IBD knows, know two experiences are exactly alike.
> 
> So that is why it is important to remember a few things whenever you post, whether asking a question, providing an answer or any other reason.
> 
> First some tips everyone should keep in mind:
> 
> It hurts to stub your toe. It hurts more to break your toe. That does not mean the first person has not experienced pain themselves. It is important to remember that everyone is different in what they have dealt with in this disease. Some people may be worried about having their first colonoscopy while others are worried about their 4th or 5th surgery. Both worries are a big deal in the minds of the individual, and it is never comforting to hear someone say something along the lines of deal with it or I have had to deal with much worse. I do not think it is wrong to point out a person's misconception regarding something (like overall a small bowel follow through or barium swallow is definately worth it if you are going to get a diagnosis and treatment plan), but it is important to remember we are all at different stages with this disease and all experiences are something new and difficult to deal with for many. It is important to not brush everything off as "not a big deal" when it is for a person. Obviously this is something that should be used when this is in fact the truth (like with going on some medications like Pentasa), but it should not be figuratively shoved in a person's face or to make a person feel bad for worrying about something. Especially in the support sections where people may be looking for some support even if they know what they are going through is a normal procedure or occurence, try to by empathetic.
> 
> 
> Those of us with more experience with this disease have likely done a lot of personal research or (unfortuantely) have a lot of personal experience with the different aspects of this disease.  While there is no doubt that your wisdom and advice are appreciated by others on the forum, it is important to remember that the people your are helping are at a different stage with their disease then you are. I am not talking about the severity of the disease (which is always important to keep in mind) but rather where they are in coming to grip with the fact that they now have this disease. Most people likely know very little about their disease, and they are frightened at first diagnosis. We all know those initial questions and fears running through our heads, and we often have no one to turn to for help and wisdom. That is why it is important to really try and remember what it was like to be in that stage of your disease, and be supportive and helpful to individuals. While some people may ask a series of impossible questions to answer all in the same post (how will this medication affect me? When will it work? Can I eat this food? Why do I have these symptoms? etc.) it is important to be patient with these people. There is nothing wrong with telling someone that they are asking questions that no one has the answer to, but you can try and let them know if these were questions you once had yourself and either how you learnt to deal without having the answers to these questions, or how to best determine what is right for a person. For example, with regards to food related questions I often recommend a person keeps a food diary, so they can determine how different foods affect them. This can really be done for medications to, as a person can right down how they are feeling each day and what symptoms they are having based on new medication changes. This is best seen in Kev's recent posts with his personal Prednisone Diary.
> 
> It is also important to remember what it is like when you are really down or depressed about your disease and your current situation. Those who have been there and have been out of that situation know that it is not a good place to be in, and would know it is not always helpful to just  recommend to someone that they need to stop thinking so negatively. I think it is important for all of us to remember that such bad feelings are likely not going to go away when being told by someone else to "stop being depressed" or that changing our thinking will be enough to make us feel better. That will likely just make the person feel worse, as this is what they are hearing from other people in their life and they are posting here to find others who can relate to what they are saying. It is important that people realize when they are not taking the right approach to their disease or attitude, however when people post here they are mostly looking for a way to relate what they are going through with others. A procedure we have never heard about before can sound very scary, but it helps to read some posts here to learn what others went through with it and to learn some things that are not always told to the patient by a nurse or doctor.
> 
> So what I ask all of you to do is try and relate to a person as best as you can and let them know if/when what they are posting is something you have experienced yourself. In the case with feeling bad or depression, this is most important to know the feelings are normal. From there you can give your recommendations (how you got out of the feeling bad in this case), but first take the time to connect with the person to let them know they are not crazy or different. While this disease is different for most people, we all seem to go through many of the same feelings and worries. It is important to know this, especially when you are new to this disease and feel so different and isolated.
> 
> For those of us here who are here to learn more about this disease or who are newer to it in general, I hope you see this place as a friendly and supportive community. That is the mission of this Forum, and at any time you feel this is not the case I encourage you to give me a personal message at the forum or e-mail me.
> 
> We are all hear to help each other, but it is important to realize we do not have all the answers. We do not have any medical knowledge that can not be found elsewhere or know what will work for everyone. We all have our personal stories and experiences though, which we will share with you. But what works (or does not work) for us does not mean it will be the same for you. While there are many foods that affects most of us negatively, this is not the case for 100% of the IBD population. So please understand that we can not answer questions with 100% accuracy that deal with how you will react or be affected by certain changes with your disease and its treatment.
> 
> Many of us also did not have access to a community like this when we were first diagnosed with the disease. Some of us were diagnosed before foundations like the CCFC & CCFA were as organized as they are today. So while we encourage you to ask questions and seek help, we also encourage you to do your own research. There are many books written on living with Crohn's Disease and Ulcerative Colitis. The internet also has a plethora of information, so use this resource to your benefit! It is vital to realize that not all information is factual, and some of it is written with the purpose of promoting other products (books/products,etc.). This is a place to learn more about this disease and everything related to it, so feel free to post something you have found and we can all discuss it. Remember that this community has a lot of previous discussion on many topics, so be sure to look through this material to learn about others experiences with the disease or learn more about different topics. The search function of the site is very helpful, so I recommend using it, especially before asking a question that may have been asked before.
> 
> Overall this is a community where you should feel comfortable posting at, so all rules or recommendations we make centers around the premise that we are all equal members here. I am ALWAYS willing to receive messages from members, whether its compliments (which I will never say no too ), criticism, suggestions or  anything else. If you have a question you are not willing to post publicly, feel free to ask me personally (I don't know everything, but at the very least I should be able to direct you to some helpful information) or post it in the support forum.  Posting your story in the Your Story forum is also recommended, as you may be able to meet some friends there immediately who have been through something similar to you.
> 
> The new members, old members, wise members and inexperienced members are all equal members of this community. I hope this has helped you all be more supportive and effective members of this community. If you have any other suggestions for all members to remember please post them below so that we all can remember your advice when posting here.
> 
> Thanks for reading and let's continue to keep this the most supportive and informative IBD community on the net!


Also it may be wise to get a nurseor someone on here to educate folks on the fact that Lialda, Asacol and Pentasa are pretty much the same thing! All 5-ASAP drugs.

Source: My experience as a surgical nurse and my GI doctor.


----------



## GrumpyChronie

Thanks for this.
I have just joined the forum, but I have been reading forum since I was diagnosed (2007) and I have to agree on this.
I will do my best to remember it:ysmile:


----------



## ronroush7

Strugglerer said:


> Hello,
> I have been suffering with stool secretion for last 7 years, it is tiny amount of stool (dont know whether it is pus, mucus, water or stool), however, i never have smelled it, neither anybody around me in office or at home.
> 
> I have consulted with Gastro, Internal Medicine, GP, psychiatrist, neurologist, psychologists and not doctor could helped me out.
> 
> I started to google the symptoms and found it rectal leakage, crohn, fecal incontinence.
> i don't know which one of them i am having, it could be anus cancer as well.
> 
> I don't feel any pain anywyere.
> 
> 
> Pls help.


Did the doctor run any tests?


----------



## C_Sabo

I'm 21 years old and have had crohn's for 5 years, sometimes the mental aspect is whats hardest for me, I went from being a completely healthy kid to having to look at life in a way I have ever experienced it. Music is my way out, when I hear something I made I know longer have crohn's, i'm free. I wrote a song called "Living with Crohn's" and it's for people like you and me who deal with shit that just sucks, and not many people truly understand it's demons. I wasn't able to post the link but my soundcloud is Chris_Wauly and you can find it on my page :kiss:


----------



## Kevin49

I've had Crohn's for 13 years now ! I'm a happy person ! Joking around all the time with friends and family ! I've been on Humira for two years ! Major depression came on about three weeks ago ! Missed a lot of work over the three weeks  was about time to ms-1CnsrW.gif/ give myself another injection ! Was very hesitant about it ! Oh by the way I was not in the  slightest bit depressed !!! Gave my self the injection 14 hours later I can't control my self with crying / depression / anxiety !!! Please help !!!


----------



## ronroush7

Kevin49 said:


> I've had Crohn's for 13 years now ! I'm a happy person ! Joking around all the time with friends and family ! I've been on Humira for two years ! Major depression came on about three weeks ago ! Missed a lot of work over the three weeks  was about time to ms-1CnsrW.gif/ give myself another injection ! Was very hesitant about it ! Oh by the way I was not in the  slightest bit depressed !!! Gave my self the injection 14 hours later I can't control my self with crying / depression / anxiety !!! Please help !!!


I know that sometimes when I am in a flare I will have crying episodes.  Maybe you should contact a psychologist for medication.


----------



## cmack

I have gotten emotional at times as well. Mainly crying for no apparent reason just randomly. I'm not sure why though its usually only for a short bit and then I overcome it. Maybe our bodies are reacting to the chronic stress from this disease and trying to let out a little bit of our psychological struggles with tears every so often? That's my best guess.

cmack


----------



## cmack

Kevin49,

I take Valium and it helps me cope better with mood swings. Maybe you could ask the Doc for something like that. This disease is tough on the mind.

I hope you get things sorted out,

cmack


----------



## MadDrJeckel

Jan Bernstein said:


> I enjoyed what you wrote. I have a daughter who id 19 diagnosed with crohns. She has had one surgery, (diagnosed last year) and is now so depressed. Since I suffer from derpression I can certainly relate, but my heart is brreaking for her. She is in college but does not attend classed, too ill still. She won't drop out because she says that the disease then won. She is almost out of money for college and my heart is breaking. I can't afford to help her out financially. I am drained and don't know what to do. She is seeing a therapist that has stated treating her with meds, but so far no good. Help, pplease


Perhaps with medical excuse(a) from her Doc(s), the college would let her pickup next semester where she let off. Pull the ADA card if necessary!  Her present time is best allocated investing in the time to learn everything she can about CD and everything that she will have to do to keep herself as healthy as possible.


----------



## yikes

Jojg said:


> Hello.  My 11 year old daughter has just been diagnosed with Crohn's.  I am still in the denial stage as I don't see her symptoms as that bad.  I worry that the medication they will recommend will make her feel worse than she does right now.  I am wondering if anybody has had similar symptoms and what has happened over the years?  She currently is anemic and hasn't grown much in the last year, has inflammation in her stomach, esophogas and a little in the colon; but also has a few ulcers in different places.  The one that bothers her is in the esophogas as it hurts a little when she eats.  She doesn't have any diarrhea or stomach pain.  Am I delusional to think this will be the extent of her symptoms?  I so desperately want her to avoid long term medication and its side effects.  Is it possible to monitor the inflammation by taking blood tests every few months and being careful with what she eats?  And then, if it gets out of control, take the meds?
> 
> Where should I post her story?  I'm not even sure this post will work.  I've never posted on any website!
> 
> Thank you in advance for your help, anybody.


Hi, I'm 14 and I've been diagnosed with Crohn's since I was six. My symptoms currently primarily consist of diarrhea, stomach pain, and sever joint pain, although I have had ulcers during past flare-ups. My parents also suspect I may have anemia and I'm going in to get blood tests soon. Honestly, I just started growing again this year but before that I was underweight and consequently didn't grow much. 
There is no way of knowing what your daughter's symptoms will be like in the future. Going on long term medication, as I've been told, works as a preventative and should decrease the chances of any flare ups. However, like you said, because of the side effects my family and I have never put me on any. I usually have Apriso I take as needed, however I am currently having a flare up that is unusually bad for me, so I was put on Prednisone for a week. You could consider putting her on a medication as needed like me. I have never noticed any side effects with the Apriso, and my doctors have told me to take it long-term as a preventative, but I still don't. Prednisone on the other hand is a very strong steroid and I have noticed that it makes my insomnia worse and makes me jittery. As for diet, I've been told many different things. When I was younger doctors would tell me to follow the brat diet, which means to eat mostly bananas, rice, apple sauce, and toast. My acupuncturist however tells me to cut out gluten, dairy, and refined sugar. The best thing to do is to cut out certain food groups one at a time and see if there is an improvement with the Crohn's along with any of them. 
As I before mentioned, I see an acupuncturist. Acupuncture has helped me deal with my symptoms as an alternative to taking long-term medication, and I have very rarely suffered major flare ups since starting it. 
Hope I helped! :hug:


----------



## Dawn in Michigan

I was diagnosed at 29. I realized I had the disease from a very young age. I've been on prednisone before. More than once. Only one time did I take a dose high enough to make me feel jittery and actually cranky. I called my doctor office and they prescribed something that took the edge off quite well, along with the jittery feeling. Eventually I was prescribed Purinethol, which was wonderful. I even got to a place where I no longer took meds. I just had a  colonoscopy yesterday...I get them every two years now. When on prednisone, and it's time to stop taking it, you lower your dosage along with your doctor until you are off completely. Once I was grumbling that I didn't want to go on prednisone and my doctor told me I should talkk to the parents of children who did not have the benefit of the drug. You are your own best advocate! There are new medications out there. See you and your GI doctor as a team. Work together. You are allowed to feel better!


----------



## Princess JoJo

Hello my name is JoJo I'm a 27 year survivor of Crohns disease.I have had 19 abdominal surgeries and that is with bowel resections, peritonitis,abscesses and I have had a proctectomy and I live with a permanent ileostomy. I am going on my 6 week recovery with a full knee replacement again caused by this wonderful disease. It gets very frustrating because many people including my family have no idea what we go through with this horrible disease. I have chronic nausea and vomiting. Always fatigue and just feel broke down. In 2002 I was asked at the age of 27 if I wanted to go on a intestinal transplant list.  I refused and decided to have the ileostomy on. I'm listed on my chart as complicated.   I struggle over the years because my famil dosn't understand anything at all about this nor care to.


----------



## ronroush7

Princess JoJo said:


> Hello my name is JoJo I'm a 27 year survivor of Crohns disease.I have had 19 abdominal surgeries and that is with bowel resections, peritonitis,abscesses and I have had a proctectomy and I live with a permanent ileostomy. I am going on my 6 week recovery with a full knee replacement again caused by this wonderful disease. It gets very frustrating because many people including my family have no idea what we go through with this horrible disease. I have chronic nausea and vomiting. Always fatigue and just feel broke down. In 2002 I was asked at the age of 27 if I wanted to go on a intestinal transplant list.  I refused and decided to have the ileostomy on. I'm listed on my chart as complicated.   I struggle over the years because my famil dosn't understand anything at all about this nor care to.


I am sorry your family feels this way.  This is a very supportive group here.


----------



## cmack

I agree!


----------



## Dawn in Michigan

ronroush7 said:


> I am sorry your family feels this way.  This is a very supportive group here.


Hi! This is Dawn. (I'm still trying to figure out how to have my messages not connect to anyone else's. Really sorry about that!)
Dear Princess JoJo,
First of all, I am sorry for the stupidity and lack of compassion you are receiving on a medical and personal level. Here's the second thing. You are not alone. That may not help you feel better when you're feeling plain old sick and tired. I do understand that. I haven't gone through all that you have. You are amazing! Some people get the "sympathizers" who let you know they had cramps and a bad time in the bathroom and thought of you. They still dont understand, and when you feel like taking the time to explain, they think you're being over dramatic or rude. That's been my experience. And I made sure to be polite and I formative.
When I was still able to work I would pass people in the hall - nice people - who would ask how I was doing. My answer was always "Fine" because they really weren't asking for details. I had a few friends who truly did care and tried to understand. They helped keep me going. Chronic illness, pain, fatigue...it changes us all. And that's ok because we will survive and there are times we have to adjust with how we handle our part in the world. You are allowed to be upset. Absolutely! Just don't go there alone. I'm here. And so are all of these wonderful partners in illness I am just starting to touch base with. Your story really hit home with me. Please don't hesitate to chat (I like the word) whenever you want or need to.


----------



## ronroush7

Dawn in Michigan said:


> Hi! This is Dawn. (I'm still trying to figure out how to have my messages not connect to anyone else's. Really sorry about that!)
> Dear Princess JoJo,
> First of all, I am sorry for the stupidity and lack of compassion you are receiving on a medical and personal level. Here's the second thing. You are not alone. That may not help you feel better when you're feeling plain old sick and tired. I do understand that. I haven't gone through all that you have. You are amazing! Some people get the "sympathizers" who let you know they had cramps and a bad time in the bathroom and thought of you. They still dont understand, and when you feel like taking the time to explain, they think you're being over dramatic or rude. That's been my experience. And I made sure to be polite and I formative.
> When I was still able to work I would pass people in the hall - nice people - who would ask how I was doing. My answer was always "Fine" because they really weren't asking for details. I had a few friends who truly did care and tried to understand. They helped keep me going. Chronic illness, pain, fatigue...it changes us all. And that's ok because we will survive and there are times we have to adjust with how we handle our part in the world. You are allowed to be upset. Absolutely! Just don't go there alone. I'm here. And so are all of these wonderful partners in illness I am just starting to touch base with. Your story really hit home with me. Please don't hesitate to chat (I like the word) whenever you want or need to.


You can go to the top and it should say Start New Thread.


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## Okidli

Jojg said:


> Hello.  My 11 year old daughter has just been diagnosed with Crohn's.  I am still in the denial stage as I don't see her symptoms as that bad.  I worry that the medication they will recommend will make her feel worse than she does right now.  I am wondering if anybody has had similar symptoms and what has happened over the years?  She currently is anemic and hasn't grown much in the last year, has inflammation in her stomach, esophogas and a little in the colon; but also has a few ulcers in different places.  The one that bothers her is in the esophogas as it hurts a little when she eats.  She doesn't have any diarrhea or stomach pain.  Am I delusional to think this will be the extent of her symptoms?  I so desperately want her to avoid long term medication and its side effects.  Is it possible to monitor the inflammation by taking blood tests every few months and being careful with what she eats?  And then, if it gets out of control, take the meds?
> 
> Hi! I know you posted this in 2009 but I am today where you were then. And I would so love to hear your perspective! My daughter is 9 and has been healthy, growing and active. We all caught a stomach virus in january 2017 and she had some blood in her stool. We ran some tests and she tested positive for Celiac. Her calprotectin was over 2000 (very high) and her endoscopy and colonoscopy showed some mild to moderate inflammation. The doctor diagnosed it as indeterminate IBD and Celiac. This has been a huge and devastating shock. I am so worried for my daughter! I put her on a gluten free diet right away and she has had no blood or diarrhea since. Her stools are all normal. She was anemic as well but she is back to normal now. Her calprotectin also dropped within about 10 days to 218 and. Wow is down to 180. She eats, is energetic and is largely symptom free. She does still get a tummy ache about once a day, usually with gas. This alone makes me so scared. Can this be the beginning of IBD?
> 
> Does anyone else have a child who has been perfectly healthy with sudden onset of Celiac and IBD?
> 
> Thanks so much!!!


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## ronroush7

Welcome.   I would recommend going to a section on here called Parents of Kids with ibd.  I am going to tag Clash, Maya 142 and my little penguin.


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## my little penguin

Please post here 

http://www.crohnsforum.com/forumdisplay.php?f=49


Every parent has been there
Not wanting it to be true 
Trying to avoid meds
Side effects are potential side effects 
All meds including Tylenol have potential side effects

Read the Tylenol insert not pretty

Ds was dx at age 7 and is now 13
No diarrhea 

Since you see your kid daily you get used to your kid as "sick"
Until Ds got remicade I didn't realize hiw bad he was even on his "good" days the difference was night and day 
Teachers and coaches all commented 
I can say I was very scared of the meds
And then Ds took them and he got better 
Grew /gained weight 

7 years later I no longer fear the drugs (too much )
I fear the uncontrolled disease more 
Since it can be silent and do damage without leaving a sign outside 

It's tough but you can get your child healthy again and stay there

Good luck


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## Onkar Chadha

Hi every in the group and good to see each one sharing their experiences for the benefit of the rest.
Said that, I am diagnosed of Crohn's very recently on Feb10,2018 for obstruction in two small segments of the small guts, one is 100 cm long and another 125 cm long although chronic inflation was diagnosed in Jan 2012 following series of investigations & tests, including the TB of the guts which shows up similar chronic inflammation and not very easy to discriminate one from another unless a biopsy is done to establish the Crohn's.I am being treated at the best medical institute of India, called All India Institute of Medical Sciences (AIIMS). Having conducted detailed investigations way back in Early June 2016, I was treated for TB of the guts for six months - the required duration and a repeat MRI didn't show any significant reduction in the inflammation site at the end of Ilial joining the ascending colon. All medicines stopped till I had an acute obstruction in the small guts for the very reason. Treated at a local hospital with conservative treatment to clear the obstruction in about three days course of metrogyl gibe with IV fluid. Follow up at AIIMS needed another MRI but simultaneously I am not put of PENTASA 1 gm (NSID) granules to be taken 3 times a day dissolved in water. The side effects of this medicine are very much there but gradually reduced over the past 5 days of medication to be continued until the upcoming follow-up this Thursday, 15th instant.
Meanwhile, I have done my own research from the internet and it is now confirmed that Crohn's is not an autoimmune disease as was considered earlier, still the cause of it's happening uncertain other than calling it a hereditary factor besides some other unconfirmed reasons. I am a believers in the holistic treatments as am alternative to the allopathic best suited for established causes including surgical procedure where these holistic treatment do not work.I have come across the case studies listed by the british homeopathic association and who have cured Crihn's disease since this pathy considers treatment based on both the objective investigations just as all the allopathic doctors of modern medicine follow besides the subjective investigation that the homeopaths would undertake based on the guiding principals of Dr. Samuel Hahnemann's Organon repertory setting out to find out the constitutional medicine.I have had a session with my homeipath and after having taken my individual history, he has taken a challange to make me Ceohn's free in 100days of medication with no side effects - to start with I will continue with Pantasa to be gradually reduced over a period of 4/5 weeks. Alongside, I will also take up the Yaga sessions with specially recommended yoga exercises, pranayaam (deep diaphragm breathing since the issue is tooted around the belly button (called Muldhar Chakra - the seat of digestive system) and with Chanting of OM (actually AUM) under the supervision of my daughter who is a yoga instructor. And finally, meditation to keep me free of any stress ( I am doing it otherwise every day for the past many years and I am always at peace with my own self).
You may also like to google " Can Homeopathy Cure Crohn's disease" to make yourself aware of this holistic treatment besides Chakra Healing "a visualizing technique".
I wish wellness to all the fellow sufferers on this site and will be pleased to assist wrt alternative therapies, in particular holistic healing.
Warm Regards


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## ronroush7

Onkar Chadha said:


> Hi every in the group and good to see each one sharing their experiences for the benefit of the rest.
> Said that, I am diagnosed of Crohn's very recently on Feb10,2018 for obstruction in two small segments of the small guts, one is 100 cm long and another 125 cm long although chronic inflation was diagnosed in Jan 2012 following series of investigations & tests, including the TB of the guts which shows up similar chronic inflammation and not very easy to discriminate one from another unless a biopsy is done to establish the Crohn's.I am being treated at the best medical institute of India, called All India Institute of Medical Sciences (AIIMS). Having conducted detailed investigations way back in Early June 2016, I was treated for TB of the guts for six months - the required duration and a repeat MRI didn't show any significant reduction in the inflammation site at the end of Ilial joining the ascending colon. All medicines stopped till I had an acute obstruction in the small guts for the very reason. Treated at a local hospital with conservative treatment to clear the obstruction in about three days course of metrogyl gibe with IV fluid. Follow up at AIIMS needed another MRI but simultaneously I am not put of PENTASA 1 gm (NSID) granules to be taken 3 times a day dissolved in water. The side effects of this medicine are very much there but gradually reduced over the past 5 days of medication to be continued until the upcoming follow-up this Thursday, 15th instant.
> Meanwhile, I have done my own research from the internet and it is now confirmed that Crohn's is not an autoimmune disease as was considered earlier, still the cause of it's happening uncertain other than calling it a hereditary factor besides some other unconfirmed reasons. I am a believers in the holistic treatments as am alternative to the allopathic best suited for established causes including surgical procedure where these holistic treatment do not work.I have come across the case studies listed by the british homeopathic association and who have cured Crihn's disease since this pathy considers treatment based on both the objective investigations just as all the allopathic doctors of modern medicine follow besides the subjective investigation that the homeopaths would undertake based on the guiding principals of Dr. Samuel Hahnemann's Organon repertory setting out to find out the constitutional medicine.I have had a session with my homeipath and after having taken my individual history, he has taken a challange to make me Ceohn's free in 100days of medication with no side effects - to start with I will continue with Pantasa to be gradually reduced over a period of 4/5 weeks. Alongside, I will also take up the Yaga sessions with specially recommended yoga exercises, pranayaam (deep diaphragm breathing since the issue is tooted around the belly button (called Muldhar Chakra - the seat of digestive system) and with Chanting of OM (actually AUM) under the supervision of my daughter who is a yoga instructor. And finally, meditation to keep me free of any stress ( I am doing it otherwise every day for the past many years and I am always at peace with my own self).
> You may also like to google " Can Homeopathy Cure Crohn's disease" to make yourself aware of this holistic treatment besides Chakra Healing "a visualizing technique".
> I wish wellness to all the fellow sufferers on this site and will be pleased to assist wrt alternative therapies, in particular holistic healing.
> Warm Regards


I wish you the best of health.  Make sure you are always seen by a doctor.


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## Halfgut

Princess JoJo said:


> Hello my name is JoJo I'm a 27 year survivor of Crohns disease.I have had 19 abdominal surgeries and that is with bowel resections, peritonitis,abscesses and I have had a proctectomy and I live with a permanent ileostomy. I am going on my 6 week recovery with a full knee replacement again caused by this wonderful disease. It gets very frustrating because many people including my family have no idea what we go through with this horrible disease. I have chronic nausea and vomiting. Always fatigue and just feel broke down. In 2002 I was asked at the age of 27 if I wanted to go on a intestinal transplant list.  I refused and decided to have the ileostomy on. I'm listed on my chart as complicated.   I struggle over the years because my famil dosn't understand anything at all about this nor care to.


JoJo, I understand exactly what you are going thru. Hang in there, support is here.


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## Lynda Lynda

This is all very confusing and I am overwhelmed with information and where on here I am allowed to post things. I will be back another day.


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## cmack

Hi Lynda Lynda,

You can post anywhere that you feel is applicable to you. If you have something to add or to ask on a particular thread, feel free to do so. It takes a little while to get the hang of things. Normally a thread is named correctly for the information being discussed within, this one got a little off topic. This is still a place you can post, however, going by the name of the thread you wouldn't expect to find anything other than, "Something to think about for all Crohns Forum Members." I hope that makes sense. Give me a shout if you are confused about something, I will help you figure it out.


Cheers,

Chris


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## Lynda Lynda

Finally a place where I can talk about poop


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## sonn

I feel the constant pain and sudden increased body temperature


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## cmack

sonn said:


> I feel the constant pain and sudden increased body temperature


Have you been to see a doctor? It sounds as if you should be examined. Increased body temperature and pain can be caused from infection, among other things. I would be very careful not to go too long without getting yourself to a clinic. Unfortunately infections can become very serious rather quickly and can cause a lot of damage. I hope you feel better soon, keep in touch.


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## Mins

Hello. I just joined the group. Firstly, thank you to everyone who posts on here because I've been confused for a while and you all seem to know what you're talking about. I was diagnosed with IBS and lactose intolerance a few years ago but my problems got worse about 2 years ago and worse still recently. The Dr said there was a high indication of bowel disease and I am waiting for a hospital appointment to confirm this. Recently I had diahorrea just once a day in place of my usual bowel movement and lost 5lb in 2 days. The pain is horrendous when I have to go and has been like this most of this year without the diahorrea. I now have a pain in my left foot that feels like the ball/arch/pad is throbbing. I'm on codeine  phosphate for the bowel pain.....since May. It also helps keep the diahorrea at bay.....well, usually. Somebody pls tell me what is wrong with me because my hospital appointment has been pushed back. Many thanks in advance.


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## Mins

P.s. a gluten free diet seems to help me a little as this year I realised some foods I had been eating all my life made me sick/vomit.....like normal pasta, bread and some veggies. I have also done the FODMAP diet


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