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

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?!

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.

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.

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.

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.

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

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! 

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 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.

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.  

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.

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. 

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.