Still Lost NO ANSWERS STILL!!!!!

[Susan's mom]

OK so I am so frustrated, I took Susan to have her lower and upper GI done today and well the Dr came out and told me that her colon looked NORMAL ok so I am happy my daughters colon looks normal but I still have no answers as to what is wrong with her. She did a 3 day clean out and he said there was still stool in her colon he said maybe she was backed up and that is what causes her pain. then I asked him why does she have to leave the table every time she eats to go poo and he says some times peoples digestive system works really fast and that might be why she goes right after eating. ok this contradicts itself how can she be backed up and her system be working fast? he said he seen no reason for there to be blood in her stools. I seen the pictures and I seen no reason either but I am not a dr HE is!!

However he did a biopsy and we have to wait till next week for the results. YEA more waiting that is always fun (NOT)!!!! she is not feeling so hot right now she is doing a pH probe I have to return tomorrow, that as well be ready next week with results. I think I am more lost now than I was before. I just knew they would find an answer today!!!

 

[Psilant]

I'm so sorry to hear that your daughter is going through all of this. To help with the confusion over impaction but still having diarrhea... this is possible. Bare with me while I try to explain. Sometimes, the stool can become hard and get 'stuck' in a portion of the colon. When the digestive system still has food to process and expel, it will force it's way around the hardened stool. This causes SEVERE pain because it is stretching your colon unnaturally. Trust me, it happens to me all the time. It is NOT fun. My doctor recommended Psyllium Fiber. It corrects both diarrhea and constipation. It absorbs excess fluids if needed or signals the body to release more fluids into the colon if needed. (It's also good for high cholesterol!)

I hope she can find relief soon. I know how painful it can be.

 

[imisspopcorn]

Hi there Susan's Mom....Do you know if the doctor was able to see into Susan's small bowel during the colonoscopy? I think you should push for either a CT Scan or a Barium Swallow with small bowel follow through......(If it hasn't been done already) This way they can make sure her small bowel is normal.

The majority of Crohn's patients have disease in the terminal lieum (the portion of the small bowel that connects to the colon). It is very painful.....

I'm so sorry you did not get any closer to finding an answer. I really hope the doctor has some good suggestions for you....Good luck.

 

[Susan's mom]

She has had a CT scan done but it was done by an ER dr. and He was not looking for anything like this he was just trying to see if her appendix was bad they thought she was having an appendix attack. Her appendix was good. Today Dr Ogunmola said it looked good too and he said he was going to start with the minor stuff like her gall bladder and see if she may just have an issue with constipation. He said if it is a problem with constipation he wants to do an aggressive magnesium treatment. I think is what he said I was confused. He said so much today and he has a very deep accent. It was a little hard to understand. But I got the most of what he was saying.

 

[Lulu]

My last colonoscopy in Dec 2009 came back clear even though he apparently got right through to the end of the small intestine. The biopsy showed a different result though and he suggested I have a capsule endoscopy. This showed quite a lot of inflamation throughout the small intestine as well as sections that were very narrowed.
Wait and see what the biopsy results show and take it from there, very frustrating I know.

 

[bindi's mum]

being the mother is really hard,i worry soooo much,has susan had blood tests done.bindi had all sorts of pain and d for a long time before she was diagnosed,untill her blood tests started showing she had an extreme inflamation,the doctor started thinking crohns.if you arent happy,change doctors or go back and ask for more tests.the crp blood test is a good indicator of what is going on in the body,just dont give up,it took me years of taking bindi back to the doctor,,good luck karen

 

[Crohn's 35]

I agree with Bind's mum, you really need to get a fresh pair of eyes, I had to, and one you can understand. I would see another one asap. Sometimes doc's dont take young people seriously enough... please get her some help. Hang in there!

 

[Jennjenn]

I know it can be frustrating but the biopsy can come back showing inflamation even if nothing was visable during the scope. Like IMP suggested the other test will be able to show more and possible help target more of where her problem is.

 

[InkyStinky]

Susan's Mom --- I just wanted to send you a big ((((hug)))). My first serious Crohn's flare was when I was 8yrs old, and my mom went through such a horrible time with so many doctors before I was diagnosed. I'm sorry you and Susan have to go through this, and I pray that you will get some answers soon.

 

[alexandros8]

Hi Susan's mom. I recommend getting a copy of the CT scan and other tests, the dr's office will give you a CD and a written report, and take it to a new GI who specializes in IBD and CD. Remember that any tests and records that are done are technically YOUR information, so don't be afraid to ask for it. I've received a copy of all my tests to have just in case I need it sometime.

Best wishes for your daughter.

-Alex

 

[Jer's Girl]

I hope you and your daughter get answers soon! Just keep fighting for her. Good luck to both of you.

 

[Astra]

Hi Tammy
hope you are both ok?
this is so frustrating for you, it happened to me for a long time,with my GP, til I lost it, big time! and wouldn't leave til I had a referral and an answer. I was called depressed and nuerotic for a long time! but I wasn't, I had Crohns!
everyone is right, Tammy, scream for an answer and a second opinion, it's your right, and Alex is right about the notes, get them, and go and see someone else,
preferablly one who you can understand
sending big hugs and good luck
Joan xx

 

[Susan's mom]

Thank you for all of your advice. I will ask for all the results so far. I am curious about something too. She has been bleeding after the procedure. The dr says it is normal. I guess it is she has not had alot of blood in the toilet however when she wipes (wow this seems to be to much information, but I guess this is where I would post something like this) there is alot of blood on the paper. it looks like she wiped from the front and on her period. but not much in the toilet. is that normal? and she says she is hurting soooo bad. that was last night but she is doing better today. I think the pain yesterday was from the gas pumped into her belly for the colonoscopy.

 

[Crohn's 35]

Hey susans mom.. there is no such thing as too much information here, as it is an embarrassing disease to begin with... we understand everything and nothing is sacred here.

I had many scopes and not once did I bleed. Has she bled like that prior to the scope? Yes, bloat and irritated intestines can happen, especially when they take a biopsy and they do pump full of air and vacuume the same time. She is inflammed to begin with. I hope the doctor she sees gets her the care she deserves. Women pay a bit more during periods too but that is not the problem, at the moment. Has the doc given her something for treatment or pain??? Take care.

 

[RachLG]

Hi there Susan's mom ~ I almost cried when I read your daughter's story through your eyes because I can imagine this same frustration and helplessness in my own mother. What I tell my mother to ease her worries (as much as it is possible to ease a mother's worries) is that I still enjoy my life. Answers are key when searching for a dx, but I really try (more than ever in my life) to have fun...not to let it consume me.
Also, I agree with Lulu that perhaps the capsule endoscopy ("pill cam") would be a good next step pending the biopsy results. I had the upper endo and colonoscopy and both looked normal as well. However, the pill cam showed "cobble stones" at the end of my small bowel - a place where neither the upper endo nor colonoscopy could reach. It was actually a pretty neat experience for me too - swallowing a little camera and knowing it was taking something like 50,000 pictures! However, make sure that your insurance covers it! My doctor's office called my insurace to make sure and they said only if it's "medically relevant" haha whatever that means The doctor explained to me that some insurace won't cover it if all other options weren't first explored. We decided that all options were covered, so we went ahead with the test. Sure enough though, I received a bill for $1300! Fortunately, since the propor steps were taken before hand and I had followed the doctor's advice to get it, his office actually covered the bill. To avoid this hastle though, you might want to just calling your daughter's doctor's office billing department. I hope you guys get the answers you're looking for!!!!! She's lucky to have such a good mom

 

[Tan]

Im sorry you guys still are not closer to getting any answers. It can be very frustrating to be in this position especially while you watch your daughter suffer. Like the others have said don't give up and make sure you stand up for your daughter the doctors can sometimes be too relaxed about investigating things properly Im one of the lucky ones and have a great doctor who not only give me options but asks what I would like to do etc. I have found most on here are in a similar position as you their doctor doesn't seem to listen or give a damn. If you struggle with this doc you should look for a second opinion. It would also be a good idea to get the small bowel follow thru done or pill cam as these can get into areas the scope can't. The scope found a few ulcers in small intestine but wasn't untill the smft that the doc gave a diagnosis of Crohns as they then found patches of ulcers!

Good luck I hope you can get some answers soon and your daughter can regain her life and health.

 

[Sue-2009]

Susans Mom

Susan's Mom --- I just wanted to send you a big ((((hug)))). My first serious Crohn's flare was when I was 8yrs old, and my mom went through such a horrible time with so many doctors before I was diagnosed. I'm sorry you and Susan have to go through this, and I pray that you will get some answers soon.

Hugs to you -- Its so hard to watch your child suffer...Hugs and Prayers! Sue