8 replies to this topic

[rmorgan]

Okay, for starters we are 16 days away from our wedding. It's a very exciting time, except that Brad has been extremely sick and we can't figure out why.

He's been having bad abdominal pain,for about 8 weeks now, from about the belly button down to his left side. A little bit of back pain, but not in the shoulder blades.

At first they thought it might be prostate, they ruled that out. Then they thought maybe a kidney stone. They did a CT scan, WITHOUT contrast, and found nothing. All his organs look great, blood work came back and looked great as well.

But the pain persisted, so they did a colonoscopy because he has Chron's disease and thought maybe he was just having some flare ups. Had that done, and everything came back normal. Nothing wrong in his colon, pancreas, and they also did a endoscopy, and nothing came back on that either. Nothing wrong with stomach, no ulcers, etc.

What worries me is that the day they ordered the colonoscopy his stools were completely black.

So now, 4 days after the colonoscopy his bowels are not back in check and he started having extremely painful bladder spasms, his urine looks okay, except for sediment. He's got a doctors appt. today at 2:30 to get a culture, but I just wanted to post these problems and see if anyone has any clue that we haven't come up with.

I'm extremely worried and frantic trying to figure this out...

If anyone can offer some suggestions it would be greatly appreciated!

[Soryfam]

Hi. So sorry for all of this. My daughter has Crohn's disease, and I would sure look into that being the cause. Have another colonoscopy and/or endoscopy. Be persistant. Is he losing weight also? Does he have any of the other active symptoms of Crohn's right now? (Arthritic pain, rashes, eye problems, etc.) If they can't be sure what's going on perhaps an infusion of Remicade or something similar might be tried. Since you're going through lots of excitement right now, that could be making the Crohn's flare up also.

Hope he's feeling better soon.

Sandy

[rmorgan]

Thanks for your reply. He has no other symptoms of Crohn's going on right now. The doctor that did both his colonoscopy/endoscopy is very thorough. And he's been his doctor for a very long time, and knows the family well. I know he would check everything while he was "in" there, and he saw nothing to be concerned about. He had no inflammation at all in his intestines or any other signs of a Crohn's flare up.

I talked to his doctor about stress/excitement, and how that would effect his Crohn's. Doctor said that this would make the symptoms worsen, but not be the cause of them. I really do not think it's his Crohn's. His is very much in control of it, with his medicine and diet.

Plus, last night, he woke up in a very weird pain in his legs, like they were on fire. He is a t-5 complete, so I don't know what this could be. If it's just something else added to the plate, OR somehow related to his other problems going on.

After he went to his urologist the other day, the doctor just assumed it was just another one of Brad's UTI's and gave him the usually medication. But we both just feel like something else is going on. We tried being persistent and asking him to maybe scope his bladder, but doctor said that wasn't necessary and told his to come back in a month. UGH!

It's hard to just ask for tests to be run, especially when he doesn't have health insurance. I just would hate for something serious to be going on, and every doctor is just assuming it's his Crohn's and/or UTI.

[stillgotswag]

I've been dealing with similar pain for a couple of years now. Same location, Done a million tests that say everythings fine. My Dr. says it must be some kind of nerve pain. I wish I had more to tell you, but I dont...sorry. I've tried all kinds of pain meds but what works is marijuana...not legal in Ga.

[pikey]

I have suffered with pain in my left hand lower abdomen, it was a sharp stabbing pain that would come on whenever it liked and make me wince. I had a colonoscopy done and got the all clear thank goodness. My specialist said the pain was due to my bowel filling up instead of emptying and by god it was painful my legs would spasm like I had a UTI and I felt rough and tired all the time.

I started taking Fybogel and within a short time the pain stopped.

Good luck finding a cure.

[rmorgan]

I wanted to come and give an update. I was in chat one evening and explained to some online what else was going on. Basically like this: pain went away for awhile then came back with a vengeance. Locked his stomach muscles up for almost two hours, and then crept into his hips. Went to several doctors, nothing. Then one said he thought he might have some slight arthritis forming in his hips. Did hip injections, and that didn't work, so they ruled that out.

Had a doctors appt. at the Shepherd Center in ATL. Did an MRI, again, and found a small syrinx cyst. Said it was on a part of the cord that sent signals to the hips, so basically his pain in his hips/legs, etc. is coming from the brain being confused. Kinda like phantom pains.

It's small, so they're going to try and treat it with some kind of nerve medication, seems to be helping. But will need to keep in eye on the cyst to make sure it's not getting bigger. He had two syrinx cyst he had surgery on back in 96. And it was a living hell for him. Had a lot of pain. So his spirits are down, but glad we've finally figured out what the problem is and that it can be fixed.

Please keep us in your thoughts, this new cyst is in his neck, around the C4-6 area. Surgery is going to be a bitch if it comes to that.

[rmorgan]

Another update. Doctors said he has no cyst. I'm kind of disappointed in the neurologist at Shepherd. From the moment we came in he went straight to syrinx cyst, and nothing convinced him otherwise, even after we had several other neurologists look and determine it was not a syrinx cyst.

Anyway, he has been going and getting massages on his hips which has helped and the pain is now gone. We think it was sciatic nerve pain because his muscles in hip area were so tight his massage therapist said they almost felt like bone! So other than the massages I just help him stretch those muscles out and for 7 months he's been pain free!

[Tetracyclone]

hey, very interesting update. So many have a doctor tell them "Oh it is just tight muscles" only to learn later it was something treatable that got left too long.

Tight muscles really can cause horrible pain, and it can be easily checked by a massage therapist. I am so glad you 2 found and answer. Any insurance yet?

[Liz1956]

Black bowel motions? That sounds a lot like bleeding from higher up in the system than would be seen in a colonoscopy. Did they consider a stomach ulcer or anything else? Did they do routine blood work to see if it looked like he had been losing blood?