• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Something to think about for all Crohns Forum Members

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.
 
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.
 
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 ;)
 
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.
 
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.
 
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::eek::ysmile: or has a component in it.
 
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

Super Moderator
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
 
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..
 
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?
 
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 [email protected] if you are interested!

Thanks! Take care!
 
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???
 
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.
 
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.
 
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.
 
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:
 
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?
 
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:
 
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'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

Moderator
Staff member
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

Moderator
Staff member
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
 
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.
 
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:
 
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!
 
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.
 
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.
 
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.
 
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.
 
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!!!
 
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.
 

my little penguin

Moderator
Staff member
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
 
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
 
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.
 
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.
 

Lynda Lynda

Senior Member
Location
N/A
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.
 

cmack

Moderator
Staff member
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
 

cmack

Moderator
Staff member
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.
 
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.
 
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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