My daughter has Crohn's-we need help

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RNdove
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/27/2008 11:35 AM (GMT -7)   
My daughter is 19 and was diagnosed by an ED doc this summer with Crohn's.  She hates hospitals (amazing, I am a trauma nurse and she was in nursing school but quit because she couldn't stand "smells") but refused to stay for the colonscopy.  Her pain was horrendous and the diarrhea was horrible.  Her PCP hooked us up with a GI doc I requested the following week but the scope was done for another 2 weeks.  Meanwhile the pus pocket was gone and the inflammation was cleared by then (she had been prescribed antibiotics in the ED).  She has been in and out of MD offices for two years with abd pains with the typical "mystery pains" and in fact she is called the "mystery patient" by the PCP because she has quite the benign history.  She has even had her appendix out two years ago.  Of course, that wonderful GI doc "found" the appendix she no longer had, even though I told him I saw the pathology as I was the RN at the hospital and served with the head of surgery there.  I am wondering now if she was really going through an episode then which was undiagnosed.  We have been careful with her diet.  Now she is having migraines which have put her in the hospital and virtually bedridden her even outside of the hospital.  She has been various treatments and is currently on topamax.  She is crazy with pain and now chest pain which I have even taken her back to the ED to check out.  Nothing, no blood clots, effusion, cardiovascular event, nothing.  She is a trooper, keeping up with classes is all she can do.  She is unable to work anymore but does all she can.  She has lost almost 15 pounds through this, with much of that prior to the topamax.  I don't know what to do anymore.  I am used to taking care of things and "controlling" many situtations.  I used to be a neuro nurse taking care of migraine patients administering many of these drugs and am aware of the SE but not on this end.  I know what it is to fight for a child with brain cancer--her older brother almost died from it when he was 5 and is now disabled.  I am at my wit's end and she is falling apart with pain and anxiety, wanting to be normal again, to live the life of a teenager and young adult.  Does anyone have any advice.  She is deathly afraid no one believes her anymore.  Is anyone out there who has been there?  Please help us.

gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 11/27/2008 12:56 PM (GMT -7)   
Hi RNdove Welcome to Healing Well and I am not quite sure if she had a colonscope or not from reading your post. Sorry I just got up. Has she had her blood test,scope. What's with the Dr. finding a appendix that isn't there could it be crohn's he seen? Has she had a ultra sound to check for a abcess? Or CT scan. Where was her pus pocket located?

It is hard to say or even guess without these answers but the weight lost and pain can certainly be croh's related. Not famaliar with topamax is that for pain relief. I know it is a hard thing and your worried but some more testing it is hard to find out what is wrong with her. I had bad chest pain caused by some of the meds I was on prednisone for one. Has she had her thyroid tested which can cause headaches as well? For now follow a low roughage diet maybe and get a proper GI on board that will help her with the DX .I'am sure others will ba along to help. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 11/27/2008 1:05 PM (GMT -7)   
Sorry for your daughter. I sure hope she gets better soon.

All I can suggest is when meds aren't working as hoped or expected, try them in combination with a diet like the Maker's Diet (all natural diet with no processed food or sugar) and a strong chamomile tea with honey, also a multi-blend probiotic and digestive enzymes will certainly help alot. Going this route made a difference for me and many others on board here.

Best wishes for you guys.

Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 11/28/2008 9:52 AM (GMT -7)   
Welcome to Healingwell, Although I'm sorry you need to be here. I have had CD officially since I was 23, but probably since my early teens so for a very long time. I have had migraines for a much shorter time, just a few years. I do understand what your daughter is going through. I am on Topamax as well.

As far as the CD goes, your daughter needs to have more testing done. I know it stinks, but without the proper testing, the proper treatment can't begin. If your current GI is not insisting on doing further testing, then seek out a second opinion, or third or fourth. Whatever it takes to get to the bottom of her trouble. Start with bloodwork and move on. Personally, I go for whatever test is going to give my doctor the best results without having to do more testing. Usually for me its a colonoscopy, yucky but necessary. Other people might choose to go less invasive and hope to get results without having to go to the more invasive tests. Personal choice between you and your doctor. But insist on getting to the source of her problem, she isn't making it up, and the sooner treatment begins the sooner she gets her life back.

As for the headaches, sometimes one medicine is not enough, or a migraine has been going on too long to be broken by a triptan. I just spent almost 8 weeks treating what my doctors thought was a sinus infection, but it was really a migraine. By the time they realized what it was, I had to be hospitalized and even that didn't work, it made me worse. I ended up having to have a nerve block. After 10+ weeks of a constant headache I woke up the next day headache free. OH JOY. So, find a good Neuro, maybe someone you worked with? Someone who has a large bag of tricks and find the right combo of meds to help break the headache and then keep it away. She might need to up her Topamax, or add other meds in, or maybe Topamax isn't the right med?

And lastly, this is a great place to get help, but the board is a little slow on the weekends, and especially on a Holiday weekend. So if you don't get a lot of response, please just bump your post up to make sure it stays on the first page for a few days to give people a chance to see it.

Best wishes
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 11/28/2008 2:12 PM (GMT -7)   
Welcome and I'm so sorry that you're doing the runaround of tests looking for a cause. I hope you find the cause and that if it is CD (Crohns) that we can be here for you and your daughter.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Dx'd: February 2008.
Pentasa (and much mental screaming)


Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 11/28/2008 2:52 PM (GMT -7)   
Here's an off-the-wall suggestion: consider diet-induced ketosis.

While the standing mentality is that Crohn's is autoimmune, there are some data to support the concept that it is due to an infectious agent (see the Ebringer work on Klebsiella pneumoniae). If you have friends in the medical microbiology department of your hospital, you can show this yourself; fecal culture on MacConkey agar, and test isolates for Kp. Now- cause and effect and all that, but the Ebringer group has shown quite nicely that Kp is probably responsible for Crohn's. Frankly, their approach makes a lot of sense.

The route to treatment doesn't involve drugs, so it has largely been ignored. Ebringer and his crew suggest removal of dietary starch: starve the guys out. This is similar to the approach by Gottschall ("Breaking the Vicious Cycle") and Lutz ("Life Without Bread," whose book shows a whopping 85% remission rate at the three YEAR mark by doing nothing more than restricting dietary carbohydrates to no more than 72 grams/day). There are at least four individuals who have come to the same conclusion independently: that carbohydrate restriction can put Crohn's into remission, and a few adherents to their tenets have been "cured" after 3-4 years on these diets. They take great restraint, and whether it's a cure or simply remission is a matter of contention, but it works.

As for the migraines: the brain functions well on ketone bodies. The American diet is far too high in sugars; it has been shown repeatedly that carbohydrate cravings lead to increased consumption, which in turn results in more cravings. This results in a wide spectrum of physiological problems, which in turn are treated with increasingly stronger drugs, which just mask the problem. Two recommendations:

1) Magnesium malate, ~1250 mg/day
2) Ketosis

My SO had horrible migraines. Since following the dietary recommendations of Lutz (<72 g dietary carbs/day), the intensity and frequency have been vastly reduced in the absence of prescription meds- down from having been prescribed Topamax ("Dope-a-max") at one point.

If you have any doubts as to the safety and efficacy of carbohydrate restriction, I strongly recommend reading at least one or two of the abovementioned books, plus "Good Calories, Bad Calories" by Taubes. As for me- dx c Crohn's 19 Dec, 2007. Off all my meds in a month; stopped bleeding in two months; weight up 13 pounds in 3 months. Now stable at 157 pounds (71" tall male), back to caving, and rigorously exercising >4x/week. All blood values back to normal, and my GI asking me, "So- how did you do this, again?"

RNdove
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/28/2008 5:05 PM (GMT -7)   
Everyone is so kind here.  Thank you.  I have taken your advice.  I have called a friend whose daughter has CD and will call to make an appt at UNC with a CD specialist on Monday.  I also plan to call her neuro MD instead of the PA to speak with him regarding this current plan.  She is miserable this weekend and this has been three weeks since she has been d/c'd from the hospital. 
 
Ya'll have boosted my spirits.  Today has been tough for me.  She is soooo irritable.  I have worked with her meds with other patients prior to going into trauma for many years.  I realize the SE but this brings it home.  She is on edge.  One minute she is biting my head off and the next she is crying to me to make it all go away and make her better because she hurts so much.  It is no longer the sharp pain but the constant ache that is tiring her, not allowing her to sleep.  I think that the nerve block may just be what she will need.  She has received the DHE tx, renegal, maxalt, topamax, ativan, phenergan, benadryl.  I care for my patients at work but do not want to be irritable with my daughter.  I just want to be her mother and advocate. 
 
Anyway, I will call the docs on Monday (I tried today--all closed for the holiday).  I will print all responses.  Thanks guys. 

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 11/28/2008 5:33 PM (GMT -7)   
Even if she doesn't like the hospital, I'm sure a few visits there would be much more appealing to her than being bedridden for life. I really admire you for being so strong and her as well for even being able to stay sane let alone keeping up with school!
The only experience I've had with terrible chest pains is a hiatal hernia. Has she been tested for anything of the kind?
I definitely feel her pain..I was diagnosed at 19 as well and spent about 20 hours a day in the bed and/or sleeping just to be able to ignore the pain.
My doctor gave me ultracet to keep it at bay until something more definitive was decided in order to get things better and moving. Surely something similar can be done to help her. No one deserves to go through that pain.
I wish you and your daughter the BEST of luck...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
http://weblog.xanga.com/harlequin_garret


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 11/28/2008 6:34 PM (GMT -7)   
Hi RNdove, and welcome to the forum! I hope your daughter feels much better soon! :-)

I'm just going to add that like Osprey, my son has found relief--complete relief and remission--with diet. We initially started with the Maker's Diet, but then morphed into the Specific Carbohydrate Diet (SCD; name coined by Elaine Gottschall, author of "Breaking the Vicious Cycle"). The diet takes willpower because it eliminates junk and other possible favorites from the diet, but when one feels soooooo much better, they're motivated to stay on the plan.

Our GI specialists did not tell us about the possibility of dietary control, which disappointed me when I ultimately read about it on this forum and elsewhere online. Just a few days ago I ran across this list on one of the SCD websites. It's a list of doctors in the U.S. who believe the SCD can make a difference in treating Crohn's and other intestinal disorders. Maybe you will see a name you recognize of a doctor in your area on this list. Best wishes!

http://www.scdiet.org/8resources/doctors.html
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)


MTLGUY40
Regular Member


Date Joined Nov 2008
Total Posts : 44
   Posted 11/28/2008 7:15 PM (GMT -7)   
I hope all gets better with you. Keep her spirits up. I always try and rationalize how bad I am feeling by comparing this chronic illness with a worse one...read some of the other illnesses here!

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 11/28/2008 9:45 PM (GMT -7)   
RnDove- So very sorry you have to experience your child going through this. It must be even more difficult for you knowing that you can't "control" this disease being a trama nurse. I pray she will get some reprieve very soon. I have not tried the SCD diet yet but do believe it carries alot of merit from what I have read. My husband is not a CD patient, however, has severe migraines. The newest migrain drug that he has tried was Treximet. It has worked miracles for him. As with most drugs in this class it works best at the first sign of onset and for my husband it has completely stopped his auras and the lovely 24-36 hour head funk that comes after a severe migraine....all within 30 minutes of taking it. Anything is worth a try at this point and I'm sure when you figure out how to alieviate the pain, she'll be more open to the changes in diet. Prayers for you both!
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/29/2008 6:52 AM (GMT -7)   
Hi RN dove I am glad you are making some plans here to get your daughter some help without medical assistance not much is done so it's a matter of finding the answers I often spent many hours suffering when I should have run for the hospital. You have a double whamy here to contend with and getting the headaches under control is probably much of a priority. Don't hestitate to get her to the hospital if she is suffering too much.

Also a vitamin and B-12 might help. Ensure helps when not able to eat much .I know your a Mom but remember we can only do so much without help from the medical field ,call on them when things are bad. I wouldn't wait now to go to the hospital when I have a oh God night I go..lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 11/29/2008 9:08 PM (GMT -7)   
im sorry tht ur and ur daughter are hafin such a hard time with this disease,i was dx wen i was 19 just b4 my 20th bday,i hate hospitals too but with disease u tend to get use to the idea,thou i did start crying when my dentist told me to go to the hospital to get a tooth pulled 0_o,think this disease is particalulary tough wen ur a teenager/young adult and a girl......u cant really have a good girl chat to ur best friend bout this disease.Pain is a tiring thing and i think getting her to a hospital if it gets too bad will help.This site has helped me tons aswel,if shes feeling over whelmed by this disease this place can really help great to rant bout ppl who dont understand or when things just go wrong,
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 11/30/2008 7:54 AM (GMT -7)   
Hi,
 
I have had CD for 29 years.  My 17 year old daughter started showing some symptoms also, which put us on our way to the GI.  At that time we found out that CD is showing up in people that have just had their appendix removed.  My daughter had hers removed 1 year prior to the pain starting.  I see where your daughter had hers removed also.  Please ask your GI about this, because it might shed some light on the sitation.  Has she had an MRI done re the abscess?  Even if the puss is gone it should still show a pocket where it was.  Please keep us posted. 
 
Julia
 

crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 12/1/2008 8:10 AM (GMT -7)   

Hi,

I hope your daughter gets relief soon.  My daughter was 19 when she went into the hospital for unknown stomach pain and high fever.   After her second admission they found a massive infection where her appendix used to be.  She had a resection and actually did much better for quite a while. Now she is 21 and dealing with a peri anal abscess that won't heal.  

My daughter cried all the time just wanting to be "normal".  At 21 she is dealing with things much better now, but she doesnt have the kind of pain your daughter has.  However, if the dr. even mentions hospital, she starts to cry.  She will probably have another drain put in next week because that abscess isn't getting better.

We take one day at a time. 

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