HELP! I don't know what else to do!!

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LizHappy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 6/15/2008 4:00 PM (GMT -7)   
This is a long story (as most IBD stories are) but I’ll try and be as short as possible....

My daughter is 16, and was originally diagnosed with Crohn’s back in 2005. Since then, she has been suffering off and on. In the beginning, she had a lot of blood in her stool, along with heavy mucus. Since then, (until last week) it has only been diarrhea and mucus, coming and going from once a day to 15 a day, but never "Normal" stools. She’s had 2 different docs, 3 scopes, 3 EGD’s, 2 barium swallows (that couldn’t be completed b/c of vomitting, even with a tube), 1 CT scan, and we go in on Wed for a Meckel Scan. Last week, the blood came back with a vengenance. I took her in to the doc, they admitted her. After a night of vomitting the prep laxatives (even though she was tubed) she was scoped the following day. All scopes were abnormal, showing inflamation in the Esophogus, Stomach, Upper Colon, Lower Colon and Rectum. However, all of her labs were normal (as usual, grrrrr), even the SED rate, which was only 3. She has NEVER had abnormal labs, ever! Which presents a problem. After changing docs back in early 07, they decide that they aren’t even sure if it IS Crohn’s, because of the labs being consistently normal. They say, it’s UC, then it's maybe still Crohn’s, then back to UC....but so far, they just keep saying "indertiminate colitis". Basically, they way it was explained, was she presents symptoms that you ONLY have with UC, and ONLY with Crohn’s - yet she shows BOTH.....How can that be?

She consistently has stools full of dark clotty blood, bright red blood, mucus, watery stool and sometimes no stool at all! All her scopes do show inflamation, but  nothing as to where the blood is coming from. Yet, all labs come back normal. The blood is coming from SOMEWHERE, right?! In the beginning, she was also checked for RA, and Lupus, and all labs came back negative. She has had significant joint pain (but no swelling) hives that recquired epinephrine injections (that was our very first symptom back in the day), muscle aches (rare, but still sometimes - more so recently) severe abdominal pain that comes and goes usually generalized but here lately only in the upper left quadrant. (and I'm talking SEVERE...)

SInce being discharged from the hospital last week, her symptoms have become worse, and she has remained in bed for 3 days - no energy, bloody stool, mucusy, etc. I took her back in the very next day to the ER (as instructed upon discharge from hosp.) only for them to do a CT scan, and say they can’t help her. They also said I was being unrealistic in expecting an "instant fix"! Um, 3 years is NOT instant...It was also not her GI doc who saw her, as he was out of town. (but I feel he's not really any better) But all labs, AGAIN, were nornal, SED was 3, no anemia, clotting factor normal, etc. They sent us home, where we have remained, her in the bed, and me on the internet!! I am just docummenting everything she does, eats, etc. We go back for follow up next week.

I do NOT understand, how 1. they can’t diagnose her after THREE years, and 2. how she can have severe inflamation throughout the entire GI tract, yet all labs come back normal time and time again?!

Meds she is currently on: Prednisone, Nexium, Flagyl from hospital,
- but normally she is on Pentasa, 6MP, and Elavil.
- in the past, she has been on Entocort, Prevacid, Imuran, Pepcid, and Asacol

Can someone PLEASE please help me figure this out? I can’t sit back and watch my daughter suffer like this any longer......someone out there, has got to know something, or someone who can help us.

There are NO other Pediatric GI docs in this area, only 2. And we have seen BOTH.
 
Please help me, please?!

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/15/2008 4:25 PM (GMT -7)   
I'm sorry your daughter is going through all of this!! I was told 8 years ago I had Crohn's and was put in the hospital right after my scope as I was really sick. They treated me and released. I have had flares since then but nothing like that one until a month ago. After 8 years of being with the same GI doctor, he told me he wasn't 100% sure I had Crohn's, so I went for a second opinion. Second opinion GI doctor told me that he may never be able to tell me that I 100% have Crohn's too. Its just one of those things that they may never know. All my scopes since the first one have come back no active disease as well as all my biospies. I had the IBS blood test done and that came back negitive, but I was told that doesn't mean I don't have CD. Its so very confusing and I wish I could help you more. I say just keep plugging away at it until you get some answers!! Basically what I'm learning is these doctors just treat your symptoms. There are some here who know for sure they have CD, and there are others like me, who
may never know if we truely have it. It doesn't make sense to me either and I'm still trying to learn!!!! ((((Hugs))))

Has she tried Remicade or Humira??? Maybe something to look into.
Living with Crohn's Disease since Jan./2000 but had a few years prior
Still trying to figure out if I truely have it.
(This is such a confusing disease)
 
Meds I have tried:  Just about everything 
Meds currently on:  Prednisone 35mg tapering
No Surgeries
 


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 6/15/2008 4:35 PM (GMT -7)   
Liz I am so sorry your daughter is suffering so! I know how frustrated and helpless you must feel watching her go through this.

Often times the sed rate will be normal in autoimmune diseases. With as much bleeding as you have described, I am surprised though that she is not anemic.

Question: Has she ever had a capsule endoscopy? That is the camera pill that examines the small bowel. Bleeding in the small bowel is the likely source since all the other areas have been examined. A colonoscopy can only get into the last little bit of the small bowel. And the endoscopy can only reach the upper portion of the small bowel. That leaves about 20+ feet of small bowel that cannot be visualized. The pill camera can see in there.

Question 2: Have they got the biopsy reports of last weeks upper and lower scopes? What do they say? If you have not gotten copies get them.
Inflammation that widespread in the GI tract is more reminiscent of Crohn's then ulcerative colitis. UC only effects the colon.

Have you considered taking her to a major medical center like Cleveland Clinic, Mayo, University of Chicago, Johns Hopkins, UCLA ir Cedars Sinai? It might be time to seek out one of the nationally reknowned GI docs.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, Sjogren's ?
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 6/15/2008 6:53 PM (GMT -7)   
Hi Liz Hope your daughter improves soon. If she is worse now why didn't they readmit her Gee ? Is she on ensure or any liquid supplements? I guess the big thing here is to get her feeling better. Sure hope the meds kick in and crohn's can be from mouth to anus that's for sure. Wish I could be more helpfull. lol gail

LizHappy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 6/15/2008 7:03 PM (GMT -7)   
I thought about Dallas Children's, or Little Rock, but don't think my insurance will cover anyone out of this area (military, grrr) But at this point, I'm almost willing to pay out of pocket to help her. Not sure about the biopsy report. I think they were "OK", but I haven't actually "seen" them. I don't what tests they ran, other than SED, clotting, CBC, and that all were normal.

She's not anemic... her blood count was ok, just dehydrated. Thought about the capsule, should I insist on it? I don't know what other tests to ask for, and I don't want to come across as too "pushy', b/c I'm afraid they'll just see me as a problem parent, although, I did give the ER doc a really hard time -

When she was checked for Lupus, and RA, in the very beginning, the allergist/immunologist did a full immune work up on her, and it was normal. Of course, that was 3 years ago.

The ER doc said a capsule endoscopy wouldn't help her, and there was nothing more he could do. I was like, huh? I specifically told them I thought it was coming from the small intestine, since that area couldn't be seen through a regular scope. He said that as long as the blood wasn't severe enough to cause anemia, he wasn't worried about it. From a surgeons viewpoint (He's a ped surgeon who was on call for her GI doc) I can see where he would say that, but from a parent's view, I don't care HOW much blood there is, but the fact there is blood in the first place!!

All I know, is that going to the bathroom 20 times in 2 days with bright blood, dark clots, mucus etc., is not normal! And scopes showing inflamation, with normal labs, are not normal either. If I go out of this area, who should I take her too? I don't even know what doc is good, bad or indifferent -

Here's a run down of all her symptoms:
Bloody Diarrhea
Mucus in stool
Chronic Headaches
Joint Pain
Ulcers in Mouth
Abdominal pain in the upper left quadrant
Fatigue
Poor weight gain (95 lbs.)
Completely normal blood work

Maybe someone can at least tell me who the best is, so I can get her to them.
~LiZ~
Daughter Crohn's Disease
Son Asperger's Syndrome
Solve the puzzle...


mkl11
Regular Member


Date Joined Jul 2007
Total Posts : 494
   Posted 6/15/2008 7:10 PM (GMT -7)   
This is heartbreaking to read, really. I had very similar symptoms right before I was diangosed--the severe bloody stools were what sent me to get a colonoscopy right away--but also suffered skin rashes/hives, abdonimal pain, etc etc. First of all I would go with Ides suggestion of visiting a major GI center, particularly since this has been a three year struggle. Secondly, I would also suggest looking into Remicade or Humira, as LBJ noted. That (Remicade) took care of my bleeding and 95% of my other symptoms after the first treatment. It was a godsend. And I owe this to having a very decisive doctor, which I believe is sometimes the key in seeing any results. I wish I could point you in a better direction!

As someone who is just a few years older than your daughter I feel both of your pain. I have not been nearly as sick as her, and as difficult as it's been, it's devastating to see teenagers losing some of their best years and being in worse condition than I can imagine. I hope you and your daughter is able to get some relief, and soon.
19, College Student, diagnosed June 2007, Remicade worked for a year, now switching to Humira.  Asacol made me worse, and refuse to go back on Prednisone.  Currently on a low gluten/sugar conscious/minimal dairy diet to control symptoms.  Studying in Prague, Czech Republic for Fall 2008 but concerned about disease while abroad.


LizHappy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 6/16/2008 2:12 AM (GMT -7)   
gachrons said...
Hi Liz Hope your daughter improves soon. If she is worse now why didn't they readmit her Gee ? Is she on ensure or any liquid supplements? I guess the big thing here is to get her feeling better. Sure hope the meds kick in and crohn's can be from mouth to anus that's for sure. Wish I could be more helpfull. lol gail
 Thanks!! Haven't been able to try supplements, ever since her first scope, her stomach is super sensitive (I'm sure its mental, lol) to everything. If it's any kind of dairy, she throws it up. So I just have let her eat whatever she wants. They actually said they would re-admit her, if "I insisted on it", but they wouldn't do any tests... I couldn't fathom the thought of sitting up in the hospital all over again just twiddling our thumbs, when I could do that at home. And what doctor would admit a kid, just because a parent said so???  Now, if they wanted to run some more tests, or help me figure out what was wrong, then by all means, put her back in, but don't do it b/c you think I'm being "pushy"..... I guess the pred is starting to work (we haven't ever been on it before) b/c she's only gotten sick 4 times today. This is her 3rd day on it.
~LiZ~
Daughter Crohn's Disease
Son Asperger's Syndrome
Solve the puzzle...


kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 6/15/2008 7:22 PM (GMT -7)   
I'm so sorry you have to go through this. At 16 I'm sure she is old enough to see a non-pediatric GI. So maybe it could be easier to switch to someone locally. And I have learned the hard way to make sure I get copies of all test results. When doing it outpatient, let them know to send you a copy when they send your doc one. In the hospital I have had to be very blunt with nurses and doctors to get a copy of all results. They don't always like it, but I figure that's a problem they have to deal with. I want to know what my results are with my own eyes.
diagnosed w/Crohn's 11/06, solving the mystery of years of on/off abdominal pain. No more "it's just a virus". 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, vicodin as needed, omeprazole, fish oil, sublingual B12, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Doc says no active disease, but flare-ups anyway. 11 year old son with IBS-C, on Bentyl.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 6/15/2008 7:34 PM (GMT -7)   
Ah, lovely Tricare! I have that too. Fortunately, when I returned to military care after the sudden death of my husband, there was no GI at my military hospital so they allowed me to continue with my civilian GI. Once they placed me in civial care, I was told I would be able to continue outside.

Please go to your facility's patient advocate. Tell them the story. Insist they do a capsule endoscopy. Also, ask/tell them she needs a second opinion outside of the system. I have found the patient advocate to be of great assistance to get me referred to civilian providers. Also, I might be able to offer some additional tips if I know what facility you use. BUT, please do not post it here because it might allow people to idendify you and/or your daughter. My email address is to the left under my name. It is the small icon that looks like an envelope. If you want to discuss options and how to work the Tricare maize, feel free to email me.

Your daughter's symptoms are classic for Crohn's. Now it is time for them to locate it and start getting her treatment to alleviate her symptoms.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, Sjogren's ?
 


LizHappy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 6/15/2008 7:35 PM (GMT -7)   
kimberlayn said...
I'm so sorry you have to go through this. At 16 I'm sure she is old enough to see a non-pediatric GI. So maybe it could be easier to switch to someone locally. And I have learned the hard way to make sure I get copies of all test results. When doing it outpatient, let them know to send you a copy when they send your doc one. In the hospital I have had to be very blunt with nurses and doctors to get a copy of all results. They don't always like it, but I figure that's a problem they have to deal with. I want to know what my results are with my own eyes.

Actually, that was one of my thoughts for the day... She'll be 17 next month, and can probably see an adult GI. I will look into that tommorow!  Thank you!
~LiZ~
34,  mother of 2 and proud Air Force wife.
 
16 year old Daughter - Crohn's Disease...
10 year old Son - Asperger's Syndrome...
 
One disease is destroying my daughters insides;
One disorder is wreaking havoc on my son's brain.
 
Can someone tell God my plate is full already???
 


mikemedic130
Regular Member


Date Joined Mar 2005
Total Posts : 33
   Posted 6/15/2008 7:47 PM (GMT -7)   

Dear LizHappy, I am also sorry to hear about loved ones medical problems, just a thought, some of these medications are very hard on the gut, I had to be taken off of 6mp because it caused a major flare right after I just finished getting rid of a flare.      Once I was off of the 6mp for about 2 weeks things improved- best wishes and prayers, and good luck with finding other doctors, I have been through 4 including one of the best in northeast ohio and I finally have found someone who cares!   Also a thought maybe they can give her something for the pain, or send her to a pain clinic- mikemedic130

 


mikemedic130
Regular Member


Date Joined Mar 2005
Total Posts : 33
   Posted 6/15/2008 7:51 PM (GMT -7)   
Dear lizhappy, I forgot to mention I have had 3 surgeries and other problems like most of us and my lab work is almost always
(knock on wood) normal  (which my doctor both loves and hates)even when I was in the hospital and they wanted me to go to nursing home to recouperate at 24 years old !

Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/15/2008 8:02 PM (GMT -7)   
Hello Liz..How on earth are you coping with all this!!!  Your daughter needs help and she needs it now.  I would max out my credit cards or what ever you have to do to get her help.  She is in alot of pain and suffering. All because the doctors are NOT properly diagnosing.  There is no set "rules" for crohns, I too had all my labs come back normal. Had fevers, but not a white blood count, then had a high white blood count and no fever.  I even had a surgeon tell me it was all in my head!  I lost it and demanded to take my files and go somewhere else to be looked after.  Well they moved fast and I saw a teaching doctor pronto and did the scope down the mouth.  It took him 15 min, and got me my pain killers changed and recommended surgery.  I got it done and was fine for 5 years.  2nd surgery and now on Humira, doing well.  My heart goes out to you and your daughter, Please get her to someone who gives a darn and save her from all this suffering. I am sending prayers to you and your daughter. Hugs! 

LizHappy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 6/16/2008 3:54 AM (GMT -7)   
mikemedic130 said...
Dear lizhappy, I forgot to mention I have had 3 surgeries and other problems like most of us and my lab work is almost always
(knock on wood) normal  (which my doctor both loves and hates)even when I was in the hospital and they wanted me to go to nursing home to recouperate at 24 years old !
So, you CAN have Crohn's, inflamation, and have labs come back normal?!? It kills me, I mean, how can a doc say they are going to put your kid on chemo, but don't even know whats wrong...... That's like saying, well, "I think you maybe have a blockage in your arteries, so we're going to do open heart surgery, but we don't really know if that's what it is!", RIDICULOUS!
 
This is my plan: On the 26th, when we go back in for follow up, I am going to demand the following (this comes after a night of no sleep, again!)
1. Give my kid a diagnosis. If you can't, send me to the person who can.
2. Give me ALL copoies of every lab, scope, write up, and documentation that is in her file.
3.Run every single test out there known to man, that has anything to do with the digestive systme on her, until you come up with some sort of anwser, even if it's not Crohn's related.... Celiac, whatever. Run it.
4. If they refuse, give me my file, I'm going somewhere else. Heck, I need a summer vacation anyway, maybe there's somewhere "pretty" with a GI doc. Always wanted to go to Chicago!
5. THen I'll go somewhere else.
So tell me, if I can go anywhere in the country, distance no problem, where's the best? Who's the best? I have family in Colorado, but that's about it. Hubby's usually deployed with the military, I'm on my own.......

~LiZ~
34,  mother of 2 and proud Air Force wife.
 
16 year old Daughter - Crohn's Disease...
10 year old Son - Asperger's Syndrome...
 
One disease is destroying my daughters insides;
One disorder is wreaking havoc on my son's brain.
 
Can someone tell God my plate is full already???
 


Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/16/2008 5:12 AM (GMT -7)   
Hey Liz, Good for you!  And of course for your daughter. You are paying good money for healthcare, and you should get your daughter well, the doctors should be there for her. I have had countless doctors Gi's and a urologist,,, only  2 were very good at what they do.  I am lucky to have a good GI. I cannot recommend a place for you to go take your daughter.  Some one who lives in the US should see this and help you. God bless, and good luck.  Let us know your progress!

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 6/16/2008 5:39 AM (GMT -7)   
you said "originally diagnosed with Crohn’s back in 2005". Whatdid they see in the biopsy pathology back then to diagnose this? When the colonoscopy was done did they take a sample of the bowel wall and view it under a microscope?? This is called a biopsy, then they make a pathology report (they describe the inflammation). Find that report. Since, if now the doctors say ulceration exits throughout the tract this suggests UC, (however crohns can affect all the tract but much more typically has intermittent spots of unaffected bowel.) Again, a biopsy can be taken to examine the inflammation more closely. Granulomas, aggregates of macrophage derivatives known as giant cells, are found in 50% of cases and are most specific for Crohn's disease.
regarding the hives... does she have medication or food allergic reactions? and why was epinephrine given?

LizHappy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 6/16/2008 5:59 AM (GMT -7)   
medchrt1 said...
you said "originally diagnosed with Crohn’s back in 2005". Whatdid they see in the biopsy pathology back then to diagnose this? When the colonoscopy was done did they take a sample of the bowel wall and view it under a microscope?? This is called a biopsy, then they make a pathology report (they describe the inflammation). Find that report. Since, if now the doctors say ulceration exits throughout the tract this suggests UC, (however crohns can affect all the tract but much more typically has intermittent spots of unaffected bowel.) Again, a biopsy can be taken to examine the inflammation more closely. Granulomas, aggregates of macrophage derivatives known as giant cells, are found in 50% of cases and are most specific for Crohn's disease.
regarding the hives... does she have medication or food allergic reactions? and why was epinephrine given?
    Back in 2005, I took her to the GI doc with her symptoms. He drew blood, and scheduled a scope for two days later, after a bowel prep. When we got to the hospital for the scope, he said he wasn't sure if it was CD or not, due to her labs coming back normal. But he wanted to go ahead and scope her anyway. After he did, he said that she had inflamation in about 7 areas, from Esophogus to Colon. He said she had Crohn's, sent us home with prescriptions, and made a follow up appointment for 3 months. That was it. He did do a biopsy, but I was never given the results. I just took it at face value, as in: this is what it is, we'll take the meds, and be better.
     All 3 scopes she's had, showed areas of inflamation, all scattered. The scope from last week, showed areas of inflammation: One in the Esophogus, one in the Upper Stomach, one in the Lower Stomach, Duodonem(sp) was normal, one area in the Transverse Colon, one area in the Sigmoid Colon, two areas in the Descending Colon, and one in the Rectum.
     Her origianl scope in 05, actually showed an active area of bleeding in the lower stomach.  She has areas of inflammation, with areas intermittent areas of normal tissue.
 
     As far as the epinephrine, she came down with hives head to toe, which were unresponsive to steriods. It would go away for about an hour, then come back worse. After her throat began to swell shut, they injected her. They thought it was an allergy to peanuts, but after a trip to the allergist, they could not determine what the allergy was.... IGE labs were alright. Since she had so much joint pain, they thought Lupus, or RA. Both of these tests were normal. That's when the bloody stool began, and we were sent to the GI doc, who immediately thought some type of IBD. 3 days later, we were given the diagnosis of Crohn's. The doc did not want her on steriods, b/c he stated "she's too beautiful to give her prednisone, and didn't want her to swell"..... after a couple of months of those type remarks, etc., I switched doctors.
 
     As far as I know, the 3 biopsys have all been within normal ranges, although I haven't seen them.
~LiZ~
34,  mother of 2 and proud Air Force wife.
 
16 year old Daughter - Crohn's Disease...
10 year old Son - Asperger's Syndrome...
 
One disease is destroying my daughters insides;
One disorder is wreaking havoc on my son's brain.
 
Can someone tell God my plate is full already???
 


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 6/16/2008 7:30 AM (GMT -7)   
Go to records and make copy of your daughters complete record.

When you have time to review the record, the biopsy report is in written format usually about a paragraph long. Air Force are some of the better hospitals. if you want to redo the IGE you can ask if that would help. gl

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/16/2008 10:12 AM (GMT -7)   
LizHappy said...
mikemedic130 said...
Dear lizhappy, I forgot to mention I have had 3 surgeries and other problems like most of us and my lab work is almost always
(knock on wood) normal  (which my doctor both loves and hates)even when I was in the hospital and they wanted me to go to nursing home to recouperate at 24 years old !
So, you CAN have Crohn's, inflamation, and have labs come back normal?!? It kills me, I mean, how can a doc say they are going to put your kid on chemo, but don't even know whats wrong...... That's like saying, well, "I think you maybe have a blockage in your arteries, so we're going to do open heart surgery, but we don't really know if that's what it is!", RIDICULOUS!
 
This is my plan: On the 26th, when we go back in for follow up, I am going to demand the following (this comes after a night of no sleep, again!)
1. Give my kid a diagnosis. If you can't, send me to the person who can.
2. Give me ALL copoies of every lab, scope, write up, and documentation that is in her file.
3.Run every single test out there known to man, that has anything to do with the digestive systme on her, until you come up with some sort of anwser, even if it's not Crohn's related.... Celiac, whatever. Run it.
4. If they refuse, give me my file, I'm going somewhere else. Heck, I need a summer vacation anyway, maybe there's somewhere "pretty" with a GI doc. Always wanted to go to Chicago!
5. THen I'll go somewhere else.
So tell me, if I can go anywhere in the country, distance no problem, where's the best? Who's the best? I have family in Colorado, but that's about it. Hubby's usually deployed with the military, I'm on my own.......

 
YES!!  You can!   I'm in that boat.   All my labs, tests, scopes, biopsie's come back normal!!  But I have the symptoms, painful joints, D, bloody stools, sicker than sick!     
They can't figure me out!!     But I totally understand you because I feel the same way.  They can tell people they have cancer and everything else under the sun, but they can't tell me they are 100% sure I have Crohn's.  But I was told back 8 years that I did have Crohn's.  
Living with Crohn's Disease since Jan./2000 but had a few years prior
Still trying to figure out if I truely have it.
(This is such a confusing disease)
 
Meds I have tried:  Just about everything 
Meds currently on:  Prednisone 35mg tapering
No Surgeries
 


LizHappy
New Member


Date Joined Jun 2008
Total Posts : 8
   Posted 6/16/2008 12:21 PM (GMT -7)   
I spoke with a GI doc's office this morning, to see if they would see my daughter even though she's not an "adult" yet.... the lady I spoke to sounded concerned, and is going to speak with the nurse in order to tyr and "bend" the rules for us..... Keep your fingers crossed, I hope they'll take her, even though they may not be any better than the doc we have now!! I'm waiting to hear back from them now.... Thanks to EVERYONE for their well wishes and concerns for me and my daughter!! It is greatly appreciated! Now if I can just solve my son's Autism, lol! :)
I'll let you all know what they say.....
~LiZ~
34,  mother of 2 and proud Air Force wife.
 
16 year old Daughter - Crohn's Disease...
10 year old Son - Asperger's Syndrome...
 
One disease is destroying my daughters insides;
One disorder is wreaking havoc on my son's brain.
 
Can someone tell God my plate is full already???
 


potty pooper
Regular Member


Date Joined Dec 2006
Total Posts : 375
   Posted 6/16/2008 12:24 PM (GMT -7)   
Your post almost brought me to tears. I have been suffering with Chrohns ever since I was a child, was officially diagnosed at 19, and have suffered on and off for 43 years.

I really can't add much to the helpful advice the other members have given you. The only thing I can add is: Don't let the medical people involved in your daughter's care stop you from being active. It is okay to be "pushy". This is your daughter and you have the right to insist on finding a reason for her suffering.

Wishing you and your daughter the best and sending hugs to both of you. Please keep us posted.

songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 6/16/2008 12:34 PM (GMT -7)   
I wish I had the answers for you I really do. All I can say is keep trying different docs. I have went through what your daughter has. I have had the bloody mucosy stool, pain, nausea, weakness....been to an ER where CT scans showed inflammation--but hemoglobin and other levels normal----went through it over 6times in one month.....went to a diff hospital....got admitted. Finally got help!

Its all about who you see IMHO---that sucks that its like that, but until you get really sick or keep changing docs until you find one that cares...she will keep suffering! DEMAND treatment---get records---bring them the darn bloody stool--sometimes thats what it takes.

I really hope you find help soon...I will be praying for your daughter!

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005--spread to ileum and small intestine as of April 2008. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 8wks, 40mg Pred, Pentasa.


schoolgirl
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 6/16/2008 1:00 PM (GMT -7)   
For what it's worth, I have been clearly diagnosed with both celiac disease and Crohn's disease based on biopsy, camera pill and symptoms - despite negative blood work results.  Blood tests are so very sensitive and my GI said that even people having major flares sometimes do not show positive blood tests.  And isn't the difference between UC and Crohns, besides the location, the depth of damage to the intestinal walls?  Diagnostic tests are always supposed to be looked at in conjunction with the symptoms. 
 
I hope you are able to get beyond that facility doc and get some relief for your daughter. 
Dx with Crohn's Aug 2007; celiac sprue July 2003; Type II diabetes Nov 2006.  Current meds: Entocort , Asacol, Levoxyl, Fosomax, various vitamin supplements.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 6/16/2008 4:50 PM (GMT -7)   
Hi Liz In the hospital there are pain meds, IV to resupply the body from dehydration as it can be hard on the heart. I am glad the pred is kicking in but for goodness sakes hope she's holding off on high fibre like nuts, popcorn ,wheat . I think ensure is lactose intolerant as well.Tell her we"re all hoping she feels bettter soon. Pred. can take a week or so to kick in . Another thing is she in a good enough condition to have the cam.lol gail

Christiny
Regular Member


Date Joined Jan 2008
Total Posts : 39
   Posted 6/17/2008 3:27 AM (GMT -7)   
Hi sorry to here your daughter is so unwell, I too had bloody stools major D's and mucus headache and mouth ulcers etc with left and right pain
 
it took 8 years before I was dx, not a comforting thought I know but my labs were always normal or almost normal.
 
Press on and good luck.
Dx Crohn's 17/1/08
Dx Endometrosis 2002
Dx Lupus Anti Coagulant 2004
Prednisolone 30mg lowing dose 5mg per week
100mg Aspirin
Elevit Multi Vitamin
B12 Injections Weekly
Pregnant Due 16th Dec 2008
 
 

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