New to the forum, my story!

[GabbyinFL]

Hi there everyone,

I stumbled upon this forum when I was Googling for information on hair loss related to Pentasa and I'm excited to join the community. I've been diagnosed with Crohn's for just over two years now, and my doctor and I are still trying to fully understand my condition and how to control it. Prior to being diagnosed via colonoscopy biopsy (presence of granulomas), I suffered from gastrointestinal problems for 5 years with doctors constantly telling me I had IBS and there was nothing they could do for me. So I was in constant pain and embarrassment. Finally in the summer of 2009 I met a doctor that was actually willing to LISTEN to me and after blood work, CT and colonoscopy, I was diagnosed with Crohn's. I'm told I have very mild Crohn's, so I've been on Pentasa 8 pills a day (500mg) for the two years, with periods on Budesonide, Prednisone, etc. I also recently had a Prometheus test, but my doctor said that came back NEGATIVE, so that I don't actually have the genetic antibody that is linked to Crohn's. Talk about confusing test results!

Overall, my symptoms are probably a lot better than others on this forum, but they still disrupt my life. My main issue is actually excessive gas. I'm nearly positive that it's food related, but I've kept food diaries for different periods of time and was never able to identify the culprits (aside from some obvious ones like beans and cauliflower/cabbage). So a lot of the time, I'll start a meal with a flat stomach and within an hour after finishing the meal I'll look like I'm pregnant and have to excuse myself from public situations to go home and expel the gas. :stinks: Not pleasant for a single 27 year old woman who is trying to date! I also tend to have hard stools, so I've got recurring hemorrhoids, which are incredibly uncomfortable. Sorry, I don't know if that's too much information, but it feels good to share these details because I normally keep them so secret for fear that others will judge me or be grossed out. I don't really have the typical Crohn's symptoms of weight loss and excessive diarrhea, but I also know this is a progressive disease, so who knows what the future will bring.

All right I guess that it's for now. Thanks for welcoming me into your community!

Gabby

 

[Crohn's 35]

HI Gabby :welcome: Your story is alot like many here. We understand the bloat and some harder stools. Most people avoid wheat and dairy products as they tend to cause bloating. I dont constipate I have loose stools most of the time. Constipation will cause hemmies and it is painful. So try and drink more fluids, being most of it water.

Yes it is a progressive disease but keeping your stress level down, eating a low residue diet can go along way. Glad you found us , hope to see you around :banana:

 

[Jessi]

Hi and welcome! I'm happy that you've found us. It really is goo to be able to speak of our issues "out loud" here.

Your symptoms sound a bit like gluten might be bothering you. I had the same problem for several months last year. Everything with gluten in it made me look preggos after eating. Things like wheat, rye, and sometimes oat. Have you ever tried cutting it out?

Again, glad you joined us, Gabby. :hug:

 

[Blue]

heyy welcome to the forums

sounds like your on pretty much the same pills that I will be on And its good that we can talk to eachother on these forums without feeling embarrassed, since were all in the same position. anyways, welcome!

~Blue

 

[xJillx]

Hi Gabby and welcome! Don't ever worry about sharing too much information on here. This is the place to do it!

I have issues with gas, too. It can be really, really painful at times. The joys of Crohn's...

You mentioned you were researching hair loss. Is this a recent issue? What does your GI think? To be honest, I never heard Pentasa causing hair loss. Regardless, I sure hope this issue resolves itself quickly!

 

[GabbyinFL]

Thanks for the welcome everyone!

xJillx -- my GI actually told me the Pentasa is probably what is causing the hair loss. He said it's a fairly rare side effect, but it does happen and actually when I googled it I found scores of people reporting similar problems. He said it's probably because I've been taking such a high dose (4 grams a day), so we're cutting back to 3 grams a day to see if that helps at all.

Jessi -- I've never tried going gluten free because I've tested negative for Celiac. Generally breads and carbs seem to be better on my stomach than healthier foods like veggies and fruits. But it may be worth a shot for a couple of weeks just to see if it helps at all!

Pen -- what exactly is a low residue diet? I guess I should know!

Anyway thanks again for the replies!

 

[Del]

Hi Gabby and welcome to the forum here.
No such thing as to much information here to be honest...
I have divulged a bit already myself and feel better for doing so.

Have a read here Gabby http://www.rooj.com/Low_Res_Diet.htm
Take care...

 

[hannaho]

Hi gabby,
Im on 8x500mg of pentassa a day i usually have lose stools but from time to time will become terribly constipated and im not sure which one is worse,just awful1 I was so happy aswell i found this forum as i have only been on here for about three to four days. It is great to hear other people's stories on here. It is very embarassing and i sometimes feel like people just dont get it but its great on here..I know what u mean these gastrro docs always wanna do tests a regular colonoscopys so annoying and can be confusing..
Good luck.xx

 

[Mudstick]

Welcome Gabby, I am new myself and have not yet been diagnosed. My 2nd Colonoscopy is on the 26th. I have either very lose stools or constapation. Mine has been going on now for many yrs. I found this site just looking for info on Crohns. It has helped me greatly to talk things out and to find out I am not crazy. Fresh fruits and veggies are not my friend. Neither is anything dairy. I have learned to stay away from the things that bother me. This flare up has been going on now for a month. I have not been put on any meds. But wish I was on something for the pain.

 

[David]

Hi Gabby and welcome

1. Do you know what area of your intestines they found the Crohn's?

2. Would you be willing to share a typical weekly diet you have?

3. Do you take any supplements?

I ask because I am very much into vitamin and mineral deficiencies that are associated with CD and that info could help.

 

[Laureneh]

Hi Gabby and thank you for sharing your story!

Like you, I have only just stumbled across this website! I am a 20 year old student from Australia and am currently suffering from Crohn's disease having been diagnosed properly a year ago.

My story properly began 5 years ago when I was experiencing excruciating pains in my stomach, having severe bouts of diarrhoea and losing weight quickly. Initially, the doctor I was seeing thought I was complaining and had a bout of gastroenteritis. They then changed this diagnosis to appendicitis and I had an urgent appendectomy only to find my appendix was normal and not inflamed at all. During this procedure, they found free fluid and blood in my peritoneum (abdominal cavity), and I was quickly sent back to the emergency room to check for problems with my ovaries and other organs, however, my gastrointestinal tract was never looked at. I continued to have problems over the next 5 years with bouts of tummy aches, diarrhoea, and severe lethargy without any full diagnosis. I also started to have other associated symptoms such as severe sacroiliac back pain, and skin rashes, and was sent to a rheumatologist for examination. 3 years later (2009), was my final year of schooling and I was becoming increasingly unwell without any indication as to the cause. I lost 14 kilos (and I'm only a small girl anyway) and was hospitalised for 16 days right in the middle of school exams! It was so unpleasant and for some reason there was still no diagnosis made. Last year finally there were answers! I was sent to a gastroenterologist who performed a colonoscopy and endoscopy and found ulcerations along the entire length of my ileum. He was incredible and quickly placed me on medications. Currently I am taking imuran, mesasal and prednisolone for flare ups. I'm trying to manage my "flare up" foods at the moment and have been to a dietician to try the "low fodmap" diet which is working well and worth a look at if like me, you have been struggling with food choices.

I just really wanted to share my story, because I'm trying to control my life and not let crohns disease control me! I'm living my dream and studying medicine and I'm hoping to get into paediatric gastroenterology when I'm finished to help others like all of us! I've had a recent hospitalisation for a flare up again this year but I'm getting back on top of everything.

I hope everyone is going well and I'll look forward to future posts with advice, ideas and thoughts to conquer crohns!

Many thanks xxx
Lauren