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


 
04-09-2016, 06:06 AM   #121
Strugglerer
 
Join Date: Apr 2016
Location: Dubai, United Arab Emirates
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.
04-09-2016, 12:58 PM   #122
ronroush7
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I don't know the answer but I might keep pushing with a doctor until I get an answer. I wish you the best.

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04-09-2016, 01:47 PM   #123
Heather M
 
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Thank you very much guys!!!
07-09-2016, 12:34 AM   #124
Alliesavage
 
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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.
08-17-2016, 09:41 AM   #125
GrumpyChronie
 
Join Date: Aug 2016
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
08-17-2016, 09:45 AM   #126
ronroush7
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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?
09-18-2016, 02:06 PM   #127
C_Sabo
 
Join Date: Sep 2016
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
02-04-2017, 07:37 AM   #128
Kevin49
 
Join Date: Feb 2017
Location: Middleville, Michigan
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 !!!
02-04-2017, 12:07 PM   #129
ronroush7
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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.

02-08-2017, 01:51 PM   #130
cmack
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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
02-08-2017, 01:57 PM   #131
cmack
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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
04-04-2017, 12:20 PM   #132
MadDrJeckel
 
Join Date: Apr 2017
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.
04-11-2017, 01:11 AM   #133
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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!
04-11-2017, 11:59 AM   #134
Dawn in Michigan
 
Join Date: Apr 2017
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!
04-18-2017, 11:05 PM   #135
Princess JoJo
 
Join Date: Apr 2017
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.
04-18-2017, 11:53 PM   #136
ronroush7
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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.

04-19-2017, 12:10 AM   #137
cmack
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I agree!
04-19-2017, 04:44 PM   #138
Dawn in Michigan
 
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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.
04-19-2017, 05:11 PM   #139
ronroush7
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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.

05-01-2017, 02:31 PM   #140
Okidli
 
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[QUOTE=Jojg;75795]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!!!
05-01-2017, 02:53 PM   #141
ronroush7
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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.

05-01-2017, 06:52 PM   #142
my little penguin
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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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