Crohn's Disease Forum » Your Story » Something to think about for all Crohns Forum Members

 
02-11-2007, 03:44 PM   #1
mikeyarmo
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Something to think about for all Crohns Forum Members

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!
02-12-2007, 07:39 AM   #2
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
07-24-2008, 03:17 PM   #3
teeny5
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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.
03-24-2009, 10:52 PM   #4
LeafyOYT
 
yeah the pain sucks.... and the amount of toilet paper I go through is scary!
03-25-2009, 05:06 PM   #5
Kev
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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.
__________________
KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
03-25-2009, 07:59 PM   #6
Leafy2
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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,
03-26-2009, 01:21 PM   #7
Jojg
 
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.
03-26-2009, 01:59 PM   #8
Guest
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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?
03-31-2009, 04:52 AM   #9
alexfell
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Join Date: Mar 2009
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.
04-09-2009, 12:11 PM   #10
ruthio27
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Join Date: Apr 2009
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
06-29-2009, 09:26 PM   #11
nwtnurse
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Join Date: Jun 2009
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.
06-30-2009, 01:15 AM   #12
GoJohnnyGo
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Welcome nwtnurse!
08-22-2009, 09:29 PM   #13
g.turner53
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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 , u all sound like some very special peeps and thankyou!
08-27-2009, 06:46 PM   #14
bella_sky
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well said, we all are very different yet connected - you have a unique writing ability which is very touching!
10-07-2009, 11:15 AM   #15
lc2978
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Thank you Mike, it helps. Gettin 1st surgery on Friday 12PM.
02-22-2010, 03:48 AM   #16
worriedmomnj
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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!
02-22-2010, 07:35 PM   #17
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
02-22-2010, 07:45 PM   #18
My Butt Hurts
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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.
02-27-2010, 04:27 PM   #19
Nicole
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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
02-27-2010, 05:23 PM   #20
rygon
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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?
04-07-2010, 06:23 AM   #21
Wish2BCrohnsFree
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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!
04-08-2010, 12:19 AM   #22
GoJohnnyGo
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Hey Wish2bCrohnsFree!

I have Ankylosing Spondylitis too!

Stay away from Ibuprofen. Not good for the gut.
04-12-2010, 07:46 PM   #23
bostitch7
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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
07-20-2010, 12:19 PM   #24
canope
 
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Location: New York, New York
Thank you for this beautiful post. It makes me feel safe to be here.
08-05-2010, 12:43 PM   #25
lseibert
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Thank you for the post, it's so true, all experiences are different. But, it's nice to know that you are not alone....
08-05-2010, 12:52 PM   #26
Dallies
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Hi Iseibert, would you like to post your story in the, 'My Story' page so that we can welcome you properly x
__________________
Dallies xxxx Parent of an 18 year old diagnosed with Crohn's Disease in June 2010

Meds: 100mg Azathioprine.
Surgery:hemicolectomy June 2010
08-05-2010, 01:01 PM   #27
lseibert
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I will, I just joined and trying to figure how to get around...
08-05-2010, 01:13 PM   #28
Crohn's 35
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lseibert...Welcome Hey not to worry I have been here 2 years and still trying . 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
08-06-2010, 09:40 AM   #29
mfleming
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Join Date: Aug 2010
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
08-06-2010, 10:23 AM   #30
mfleming
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Join Date: Aug 2010
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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