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


 
12-21-2013, 01:22 PM   #91
DamnitCrohns
 
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Great post, this forum really is a ridiculously valuable place for so many reasons. It's full of a wealth of information, experience and just as importantly, supportive people.

Be good to each other guys, we're in this together!
01-16-2014, 09:47 PM   #92
Cascadia
 
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Thanks for posting, this is a great message as a newcomber to this online support community.
02-14-2014, 10:44 PM   #93
justsomeguy
 
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Thanks
03-06-2014, 11:55 AM   #94
chicky402
 
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It is great that everyone has a different experience. This is the reason I signed up for this forum. I just was diagnosed with CD and so far am enjoying reading and gaining new insight into how people are coping with CD. A special thanks to the person who created this site.
03-07-2014, 06:14 PM   #95
mdd
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We are like family!
04-26-2014, 11:00 AM   #96
Stevi (:
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Well put
04-26-2014, 05:09 PM   #97
Ali29
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I also am so thankful for the site!!
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Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
04-26-2014, 10:52 PM   #98
ronroush7
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I also am so thankful for the site!!
I am also thankful.
05-16-2014, 10:53 PM   #99
lisadc1
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Thanks...as a newbie to this site I am looking for answers. As a newbie to the diagnosis of both crohns and colitis and feeling overwhelmed with medications that keep getting loaded on me compounded with extreme fatigue, I am about to completely give up.
05-17-2014, 07:15 AM   #100
ronroush7
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Don't give up.
06-08-2014, 10:56 PM   #101
lacey2
 
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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.
06-09-2014, 07:25 AM   #102
lisadc1
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What is the medicine you are taking? Mercy, your numbers are high! Prayers for you lacey2!
06-10-2014, 02:40 AM   #103
lacey2
 
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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.
07-22-2014, 11:35 PM   #104
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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
07-23-2014, 02:26 AM   #105
lacey2
 
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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.
08-19-2014, 10:21 PM   #106
sue llewellyn
 
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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!
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.
10-24-2014, 02:01 AM   #107
lacey2
 
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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 or has a component in it.
10-24-2014, 02:02 AM   #108
lacey2
 
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Do I have to withdraw from the Crohn's forumn now?
10-25-2014, 07:55 AM   #109
Muppetgirl
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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.
10-25-2014, 03:07 PM   #110
DustyKat
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Do I have to withdraw from the Crohn's forumn now?
No Lacey you donít.

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 Ďlostí 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
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10-25-2014, 09:39 PM   #111
lacey2
 
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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..
12-19-2014, 02:22 PM   #112
iblack06
 
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06-02-2015, 03:07 PM   #113
Margaret234
 
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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?
06-22-2015, 01:57 PM   #114
krsalmon
 
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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 Crohnís 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!
04-08-2016, 06:33 PM   #115
Heather M
 
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Great tips, Mike! Thank you for posting
Hi, I am new to the forum. How do I post a question or concern?
04-08-2016, 06:36 PM   #116
Heather M
 
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Hell, I am new to the forum. How do I post a question or concern on here?
04-08-2016, 06:39 PM   #117
Heather M
 
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Hello, I am new to the forum. How do I post a question or concern on here?
04-08-2016, 07:28 PM   #118
Heather M
 
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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???
04-08-2016, 08:38 PM   #119
Eridon2002
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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.
04-08-2016, 09:29 PM   #120
ronroush7
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It is probably from the steroid
By the way, welcome to the forum.

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