Greetings

[tbartnett]

Hello everyone,

My names Tom, but I usually go by Bart. I have been checking this forum out for a couple of months just to get a feel for the place, and I decided it was something I wanted to be a part of. I am a 30 year old from Ohio, and I suffer from chronic abdominal pain. I have spent the last year and half in and out of hospitals undergoing just about every test and scan you can imagine. After multiple "inconclusive" diagnosis' (how do you pluralize diagnosis?) and several surgeries, I am learning how to manage my pain and life a relatively normal life.

I have found a lot of useful information on this board over the past few months, and its helpful to read the stories of other people going through the same types of things, so I wanted to become a more active member of this community. I will spend some time reading through the forum rules again, and will do my best to make sure I abide by them.

Thank you for welcoming me to this community and I look forward to interacting with and getting to know you all a little better.

Bart

[ek2012]

@tbartnett Welcome to PR. It is a very useful site. And a lot of great member on here too. It is like a mini family. Do you mind if I ask if you have any GI issues that you have actually been labeled (like chronic gastritis or IBS)? Good luck to you here! Look forward to getting to know you better.

[blink]

@tbartnett Hey Bart and welcome ! I have a family member with chronic abdominal pain . Many endoscopy , colonoscopies, and hospital visits with a Dr. diagnosis of Crohns disease. Lots of info here to help. Having the right Dr. who is a Gastroenterology specialist is the best advice I can give.

[tbartnett]

Thank you ek2012!

I've been through the wringer on just about every abdominal/GI issue I can think of. Originally they thought I had chronis gastritis, when that didnt work, they thought it was gastric ulcers. When treatments for that didn't work, I was diagnosed with appendicitis and had surgery to remove my appendix. When that didn't work, I was diagnosed with chronic cholecystitis and had surgery to remove my gall bladder. That seemed to help a little bit, however, after those surgeries I was told that I have Hyperalgesia which my abdominal muscles extra sensitive to pain, and was sending them into sever spasms. Because of that, my wounds from the surgery never healed properly. I developed all kinds of scar tissue issues - I developed adhesions of the scar tissue to the abdominal wall and intestines, which has resulted in all kinds of digestive issues. They wanted to go in to do another surgery to remove the adhesions, but I refused... I figure that if the first surgeries caused the adhesions in the first place, and that another surgery would only make it worse...

Now, they've pretty much "ruled out" most every condition they could think of. I have had ultrasounds, CT scans, MRI's, endoscopies, colonoscopies, gastric emptying studies, Hyda scans... no luck. I am not upset with my doctors, and I dont blame them... I truly believe they are trying and that they care. I continue to undergo basically every test that any specialist can think of to no avail. I am learning to live with it, and am managing the pain effectively through pain medication, and, believe it or not, acupuncture, which has been my most helpful treatment to date.

I think I have pretty much boggled all the doctors and specialists, so if anyone has any thoughts I am very open to suggestions

Thanks again!

Bart

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Thank you as well for your response blink! My dad introduced my to a friend of his who has Chrons disease as well. I was so excited to meet someone who had the same issues as me, and though I had finally found the answer. I talked to my doctor about it, and underwent a few different blood and urine tests, but they all came back negative for Chrons. I was actually DISAPPOINTED that it came back negative, its pretty sad that you can get to a point where you are actually hoping to come back positive for a disease just to have an answer! Honestly the toughest part is the uncertainty and the fear of not being able to know what is wrong with you. I think just having the peace of knowing what is wrong would help me a lot.

[blink]

As sad as it was to find out it was crohns , I was relieved to know what it was.
We went through 3 Drs. and all those test you described.

Even diagnosed and having meds for it does not ease his pain. I know you probably don't want to hear that but it is just part of gastro problems. It is very embarrassing and totally interferes with his social life . Also it gets very depressing for him.
I pray every day that some new break through medicine will come out.
Naltrexone helped for a while but Dr. decided to take him off of this.

[ek2012]

I also would like to add all the females of my family have GI issues including crohns disease amongst others. So I may be able to help contribute on this topic. We have about 6 diseases/disorders between us. So if you have any questions feel free to ask away!

[tbartnett]

Thank you both for your responses... I wouldn't wish this on anyone, but it is nice to know that there are other people who have the same problems as you do, as it can feel very lonely going through this.

If I may ask, do you know what test was finally used to diagnose your relative with Chrons? From what I understand, there as several tests that can be used, and some of them can give a false negative. I am not 100% convinced that I don't have it, and would love to know if there are any other tests out there.

Thanks!

Bart

[ek2012]

My sister was officially diagnosed with Crohn's by a colonoscopy and taking samples that tested positive, same with all the females of my family including myself. We under went colonoscopy's and endoscopy's with biopsies to get our answers. Hope you will find your definitive answer, hang in there! Best of luck!

[blink]

I really trust this Dr. which is very important. I don't think it was just one that convinced him it was crohns, it was all of them together. The Barium enema and the stool sample was the last test he had before he was diagnosed.

[patti24_2000]

Hello everyone,

My names Tom, but I usually go by Bart. I have been checking this forum out for a couple of months just to get a feel for the place, and I decided it was something I wanted to be a part of. I am a 30 year old from Ohio, and I suffer from chronic abdominal pain. I have spent the last year and half in and out of hospitals undergoing just about every test and scan you can imagine. After multiple "inconclusive" diagnosis' (how do you pluralize diagnosis?) and several surgeries, I am learning how to manage my pain and life a relatively normal life.

I have found a lot of useful information on this board over the past few months, and its helpful to read the stories of other people going through the same types of things, so I wanted to become a more active member of this community. I will spend some time reading through the forum rules again, and will do my best to make sure I abide by them.

Thank you for welcoming me to this community and I look forward to interacting with and getting to know you all a little better.

Bart

Welcome Bart!! I think you will like it here. There is a great deal of information available for those who are prepared to read, read, and then read some more. I hope you find what you are looking for. Again, Welcome.

[tbartnett]

Thank you all again for your responses... it is so interesting to hear of all the different ways people are diagnosed with Chrons. It seems like tests that are definitive for some people, completely miss it on others. I have had the barium enema stool sample, 24 hour urine sample as well with no luck.

The next thing they want to do is start biopsying different internal organs. I am really hesitant to do that, as I have already had to much trouble with scar tissue causing more problems after surgeries :-/ Have any of you all had experience or know someone who has had to undergo bowel, liver, stomach, etc. biopsies? Any feedback or suggestions? I would really like to avoid it if at all possible.

Thanks again!

[ek2012]

Thank you all again for your responses... it is so interesting to hear of all the different ways people are diagnosed with Chrons. It seems like tests that are definitive for some people, completely miss it on others. I have had the barium enema stool sample, 24 hour urine sample as well with no luck.

The next thing they want to do is start biopsying different internal organs. I am really hesitant to do that, as I have already had to much trouble with scar tissue causing more problems after surgeries :-/ Have any of you all had experience or know someone who has had to undergo bowel, liver, stomach, etc. biopsies? Any feedback or suggestions? I would really like to avoid it if at all possible.

Thanks again!

Hi, Myself and other people in my family have had EGD's and colonoscopies to have biopsies taken. None of us had any issues. As for myself I have quite a bit of damage in my stomach and esophagus and that is where they biopsied me and as far a I know it did not create more issues, only answered our questions. Other members of my family and myself as well have had several biopsies via colonoscopy and they seem to not have issues and as well have a lot of damage inside, you should get pictures to see how lovely it all looks. They can find out a lot from taking biopsies. I know from my two procedures I wound up with about 3 diagnosis's.

[tbartnett]

That is really helpful to hear! I have been really nervous about doing anything even remotely invasive given the trouble I have had from scar tissue from my other surgeries. It is really good to hear from someone who has gone through similiar issues and has had success...maybe I will give it some more thought. It is hard to find people to talk about this stuff with, because unless you have been through something like this yourself, or are close to someone who has, then people really just dont understand.

Thanks again!