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New Member, Megan

Hello all, My 14 yr old daughter, Megan, is currently being tested for Crohns. We have a colonoscopy and endoscopy scheduled in a few days. She has had awful symptoms for 2 years now. We initially were sent to the Pedi Gastro at our local Hosp for follow up after our Pediatrician just couldn't understand what was going on. We were assigned the head MD at the Hospital's office who thought Meg was constipated....lots of gas pain, debilitating really, and diarreah for 5 wks. After diet change, supplements etc....we had to go back and another doc said...I don't see a blockage in the earlier xrays (WHAT?!)...Poor kid. All that for nothing and as a parent I was listening to the docs and pushing my daughter to get up and go, eat this not that, c'mon hurry up, etc. I feel awful.

Now, it's diarreah 24/7...severe abdominal pain, weight loss (7lbs in 2 months) and leg pain...hard to walk. So yet another doc at the Hospital is saying , time to test for Chrons. Why do they wait until your child is practically comatose to do something proactive?! Poor kid can't eat, can't sleep, can't spend a whole week in school, blood pressure drops to really unsafe levels (82/54 the other day, almost passed out!) Why. I am hoping this forum will help us get a better understanding. I will follow everyone closely and in turn keep you all posted. Thanks for being there, Best to everyone. Angela
 
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Jessi

Moderator
Oh, Angela! What a rough experience for momma to watch her sweet baby in so much agony. :hug: I'm glad you joined our forum. I hope you can find comfort here.

What bowel prep is Megan drinking for her scope? Honestly, that's the hardest part of the whole procedure. I hope you both handle it well.
 

Crohn's 35

Inactive Account
HI Megan's mom... It is heart breaking to see your child ill I know. But like Jessi here the prep is the worst. If you can ask for Pico Salax or Movie prep ...they are the better choices. They will put her out and demand it if they say they dont. THAT is painful. I never have problems with my scopes, just the prep or not eating. I am glad you seeked our help for your daughter. When this is over even if they dont find anything (dont be surprised) she can join us as well. We are here to help. Always someone here to help.
:welcome:
 
Location
New Zealand
Hi Angela

Isn't this a great place? So much information and really lovely people. Crohn's seems to be a last resort diagnosis.

We have just started using the forum and I know it will help give strength to the questions you need to ask your Dr.

My husband Phil has CD so I can understand a little how it is to be on the outside of the illness, although so much harder when it is your child. Our youngest is 14 :) A son - Liam. I sympathise with you, it must be frustrating for you and Megan to have found no blockage after all that time.

I see there is a teenage part to this forum, maybe that will be helpful for her, if not right now then later as things become clearer. What I do know is the more your family understands the easier it will be on Megan. Phil is very private, but I found the more our boys knew and I was graphic in telling them so there was no misunderstanding, the easier it was on Phil. Does Megan have siblings?

Take care of Megan and yourself x
 
Thank you

Thank you, actually because she is not really eating anything these days, the ddoc is using Miralax for her prep. She will be under general anesthesia. We will keep everyone updated
Too. Thanks again. Angela
 

Jessi

Moderator
Miralax is a decent prep. Not the worst tasting, but nothing pleasant about it either.
General anesthesia is more than highly recommended. I'm glad they're doing it that way.
The best part is the end. They don't let you leave until she's passed gas. They actually encourage the farting! Let her have fun with it. It will help her feel better about what's going on.
Good luck to you both!
 
Meg

Thanks again. I have had both an endoscopy and a colonoscopy myself and I've gone through the prep stuff with her and what to expect after. I guess she is just so concerned about what they will find. She's had a few surgeries, as she was born with a unilateral (right side) complex clubfoot. She has a sensitivity to the anesthesia. She will most likely throw up and have the shakes, but that should be the worst of it. Just need to get to the bottom of this. So tired of Meg not being able to eat without being RIGHT near the bathroom. School is hard for her because she is tired and sore all the time. She absolutely WON'T eat there. Hopefully, better times are on the horizon. THanks for all your support!
 
TO Jodi,

Thanks for your post. Yes, Meg does have a brother and a sister. Coincidentally they do not have the same bowel problems but her little sister did spend the first 6 months of her life on glycolax. She was constipated all the time and she was breastfed for the first 2 months! Her brother, who is older, is very thin, like Meg and doesn't complain about this stuff but I suspect that he has a similar problem because there is very little he can eat without heartburn. We will see.
 
Location
Kirkwood,
Hi Angela! Sending you lots of encouragement and strength. Hang in there. I have Crohn's Disease, and my very first symptom was painful nodules on my legs called erythema nodosum. The diarrhea that I had off and on was stress related I thought. Then 3 years passed by, my firstborn was 7 months old, and whammo! There for a while it was "viral" or food poisoning, and after 2 weeks and a 10 lb weight loss and anemia, I was scheduled for a colonoscopy. Welcome Crohn's. It's a very evil and strange disease---soooo different in everyone. But, perhaps Meg does not have it--the scope will hopefully give you some answers. Obviously you don't want your baby to have Crohn's or ulcerative colitis, etc. You just need an answer, and the rest will fall in place, hopefully sooner rather than later! Keep in touch with all of us here, this is such a wonderful site, and the people have helped me a million times over, and I am a new member. You're a great mom! Warmest regards, Snap
 

David

Co-Founder
Location
Naples, Florida
Greetings and welcome. I'm so sorry to hear Megan, you, and your family have been going through so much :( My heart goes out to all of you.

What supplements was she put on? As you described her symptoms, magnesium deficiency popped into my head. Do you know if she has been tested?

If she does indeed have Crohn's, we'll definitely need to talk vitamins and minerals as it tends to create deficiencies in some important ones.

All my best to you and Megan.

*hugs*
 

xJillx

Your Story Forum Monitor
Hi and welcome! I am so sorry your daughter is suffering so. It must be so difficult to see your child in pain. I hope the doctors will figure out what is going on with her health soon and get her better.

By the way, I was born with bilateral club feet. I endured several surgeries as a child up until I was about 12 years old. However, I think all I went through as a kid has made all the testing I've gone through easier. Hopefully, it will be the same for your daughter.

Best of luck.
 

DustyKat

Super Moderator
Hi Angela and :welcome:

I'm so sorry to hear of all that Megan has been through and is going through. :(

We have a parents forum here that you might like to have a browse through...

http://www.crohnsforum.com/forumdisplay.php?f=49

I so hear your frustrations hun. My daughter was finally diagnosed, on the operating table, when she was 14 but had 18 months of illness prior to that and it was heartbreaking to see her in so much pain and suffering.

I so hope the colonoscopy/endoscopy gives you solid answers and Megan can finally get some lasting relief whatever the cause. :hug:

Good luck and let us know how she gets on...:goodluck:

Dusty. xxx
 
Thanks everyone

Thank you all for your kind words. Megan has never been put on vitamins. I have asked and asked but It seems like the doctors were so sure of Irritable bowel they just wanted her to go to the Psychologist for "biofeedback" technicques to combat stress, thereby lessening the IBS....It took all I had to tell them they were wrong and had to look further. They said that the sudden weight loss and constant volatile diarreah was a game changer. So off we will go to check things out through the endo/colonos. route. We will keep you all posted. Thanks again. Angela

*the only thing they kept telling me to give her was a daily probiotic.....she cant' eat anything without running to the bathroom within 15 mins. She won't eat at school all day and now she is having blood pressure problems. Too low.
 
Megan's Update

Well, Megan had her Upper and Lower done on Wed 12/14. She did well with the Miralax prep. She was all set after taking only 28 oz because she was already cleaned out and not eating much at all. Anyway, her doc was encouraged because she didn't have the "obvious" signs of crohns that would support the kind of chronic diarreah, gas, bloating and abdominal pain she's been having. However, he did find some lesions and biopsied everything. We will know more on the 23rd when we return. Thanks for all the wonderful feedback and support! We will keep you posted! (BTW...post op, she actually ate food on day 2 and had a "semi-normal" - not watery diarreah - bowel movement today (Day 3). She complained about a lot of gas pain and fullness, had the feeling that she had to go but couldn't! That's a switch. A warm bath, gasx, and probiotic seemed to help.
 
My blood pressure has always been low with numbers very similar to your daughter. I have learned to always get up slowly while taking deep breaths. Also, even the slightest dehydration makes it worse, so try to get her to drink lots of water.

There isn't a day that goes by without me getting up too fast and experiencing a loss of vision. It starts getting black at the edges, like having tunnel vision and then goes completely black. I hang on to something until it clears.

When I was in the hospital following surgery I did not experience the vision issues, but I was super hydrated with IV's.

Your daughter's other symptoms are more concerning, but if you can get enough fluids in her, I bet the low bp will resolve.
 
Hello again everyone, well we saw the gastro doc today. The long and short of it is...Megan doesn't have crohns. However, she has these gastro sores (lesions) in her esophagus, but doesn't complain of heartburn or sour stomach EVER! She is still having explosive diarreah and abdominal pain. The doc said she hasn't lost any more weight over the last week though, a good sign i think?! However, he does think it's a severe form of IBS. We are not sure exactly why. She's going for a small bowel series follow through, bloodwork for thyroid levels (he is concerned why she isn't sleeping well..uh, she is up with diarrhea during the night along with gas pain) and we will be collecting stool samples to send to the lab to definitively rule out other things. In the meantime he wants her on 40 mg of omeprazole (prilosec) but she says she does not have heartburn?! Ugh, not sure what to do. He also wants her on a drug called Cyproheptadine HCL. This is a nighmare.
 

DustyKat

Super Moderator
Hey tupperang,

Thanks for the update hun. It's great to hear that Megan doesn't have Crohn's but I wish you had solid answers for what she does have. :( Hmmm, reading back on that it sounds cynical on my part that severe IBS isn't a sufficient enough answer! Do you know what they based the no Crohn's diagnosis on?

The Omeprazole would have been prescribed in the hope that, heartburn or no heartburn symptoms, it will help heal the lesions, but I do see where you are coming from with that Mum.

Now the Cyproheptadine HCL, also known as Periactin. It is primarily used for hay fever. However there is a condition called Eosinophilic Esophagitis (EE), of which Megan doesn't have the classic symptoms, but it is thought to be autoimmune or as a result of food allergy. I wonder if he started her on the Peractin to rule that in or out. Although I'm sure an endoscopy would have given him that answer. Just off topic here, but my daughter was prescribed Periactin for Abdominal Migraine, the thought being it would help with the abdo pain, it didn't work for her as she actually had Crohn's, but we didn't know at the time.

Yes! It surely is a nightmare and one from I hope you wake from soon! And Megan, bless her. :hug:

Good luck hun and keep us posted!

Dusty. xxx
 

David

Co-Founder
Location
Naples, Florida
I'm with Dusty. I sure wouldn't accept a "severe IBS" diagnosis. My cynical side feels that is a, "I don't know what's going on so I'll use my catchall diagnosis and send you on my way". I would have an IBS diagnosis if I didn't push for additional testing.
 
Thank you all....of course the doctor did also want her to go see the Psychiatrist in the Gastroenterology department to "help" Megan deal with stress, etc. She doesn't have a good sleep pattern and he feels that she has "something else" going on....I told him he wouldn't have a good sleep pattern at this point either if he had diarrhea for over a year! She had a fine sleep pattern six months ago! Anyway, I am NOT an advocate for meds if I don't have a clear diagnosis. Apparently the Cyproheptadine HCL is to help with the weight loss. She's down 12 lbs since September but since she hasn't lost any more weight since her procedure (which btw caused her to lose another pound and one half due to the prep) so he says..she's maintaining now....really?! I just don't know what to say. I will have to check further. Small bowel follow through is a good idea and I don't think I'm going to give her the Prilosec or Cyproheptadine HCL until we get that done. I'm NOT letting this go.
 
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