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Regular Member

Date Joined Feb 2008
Total Posts : 132
   Posted 2/8/2008 11:11 PM (GMT -6)   
After over a year of being sick, my daughter who is 15 was diagnosed with crohn's lleocolitis regional.  She has been taking:  a multi vitamin, iron for anemia, pentasa 500mg - 5 a day, Entocort -3 a day,  prilosec 20mg-2 a day, bentyl as needed for pain and 6-mp which started at 1- 50 mg and is now up to 3- 50 mg a day.  She had an abnormal small bowel follow through in early nov and late in the month she had surgery for double abcesses. Her last appt with the specialist-1/23- her levels were still very low.  She doesn't seem to be getting better.  She continues to loose weight, is always sick, tired, no appetite and has bouts of bleeding. For the past week she has been vomiting, unable to keep anything down- accompanied by a low grade fever and obviously abdominal pain.  I am desperate to find what will work for her to feel at least somewhat normal.  She is getting really frustrated and thinks she will never feel better.  Any input would be greatly appreciated.  Thanks!

Veteran Member

Date Joined Dec 2007
Total Posts : 739
   Posted 2/8/2008 11:23 PM (GMT -6)   
i know the feeling, i was diagnosed at fourteen. and honestly, for an adolescent, its a hard road to travel. However, i'm only 25 and i can honestly say there are waaaaaay more options now then there were then. When i was diagnosed, they told me that crohns was only found in middle aged jewish males. Now we all know this not to be true.
She will go through lots of ups and downs, especially as a young adult whose body is beginning to change anyway, and now she has these added pains and issues to deal with. You may want to look into getting her someone to talk to. Has your doctor discussed n e biological drugs with u? humira? remicade?
When i first used remicade it put me in remission and i was so happy! i got a good 2 years w/out any symptoms at all. I hope your daughter (and YOU) find relief. She will need you to be understanding, she may even go through a phase of being mean and pushing you away as i did the same with my mom. Its just frustration. Show her that you love her no matter what.
The people here will be of a great help to you, some are on medications that ive never even heard of. It comes down to being open minded and educated. This way you know what to ask the doctors when you visit. I hope someone else comes along with better information
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
Temp Ileostomy performed 1/29/08
Still Adusting has been my Godsend...Thank you

Forum Moderator

Date Joined Nov 2003
Total Posts : 7054
   Posted 2/8/2008 11:37 PM (GMT -6)   
Welcome to Healing Well, lil-momma! I am so sorry that your daughter is having such a rough time of late. When our kids are sick, we mothers suffer right along with them. The inability to "make it better" is so very, very hard.

I am concerned about your daughter's vomiting, fever, and inability to keep down "anything." The first concern is that she might get dehydrated. Dehydration in itself can make people feel very ill. Severe dehydration can lead to some pretty significant complications. Do you think she is getting dehydrated?

The second concern is the abnormal small bowel follow through and her vomiting. Did the SBFT show that she has a stricture or narrowing in her bowel? If it did, the fact that she is vomiting could be a sign that the narrowing has gotten worse. When narrowing gets to the point that bowel contents cannot pass, it is called an obstruction. An obstruction can be very dangerous.

Have you called her doctor this week about the new symptoms? What did he/she say? If you have not called, I certainly would - now or first thing in the AM. Most GI practices have an on-call person for nights and weekends. There should be someone that can talk to you and give you some guidance. If there is no on-call service, if she is still vomiting in the AM or is dizzy or lethargic, I would take her to the ER or urgent care center.

Please let us know how things go. My best to your daughter and you.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?

Regular Member

Date Joined Feb 2008
Total Posts : 132
   Posted 2/9/2008 12:11 AM (GMT -6)   

Thank you, thank you.....I know that many people suffer from this disease but as you all know, you can feel alone, overwelmed and completely consumed with crohn's.  I have been frantically trying to gain as much knowledge as possible and am so excited to have found this site!  I did call her Dr. this morning, I told him her symptoms.  He said to have a low fat diet over the weekend and to bring her in Monday morning.  I don't believe she is dehydrated at this point but very ill indeed.  She continues to have diarrhea so that means no obstruction, right???? 

Veteran Member

Date Joined Aug 2007
Total Posts : 990
   Posted 2/9/2008 12:16 AM (GMT -6)   
Hi lil and welcome to the forum, but so sorry you have to be here. My son is also 15 and was diagnosed last June (he'll be 16 soon). He *seems* to have a "mild case" of Crohn's, but I say that knocking on wood. I will keep your daughter in my prayers. This is truly a tough time for her, I'm sure.

Just curious...have you tried any dietary changes for your daughter? Although our GI (at one of the top children's hospitals in the country) told us "no dietary restrictions or recommendations", after my son's diagnosis I found myself looking for anything and everything that might help him even more. I ended up right here on this forum where I lurked for quite a while. I learned about The Maker's Diet (by Jordan Rubin) and The Specific Carbohydrate Diet ("SCD", by Elaine Gottschall). There are other diets out there, but these two seem to be the most common among CD folks. Possibly one of these would help your daughter? The book for The Maker's Diet is called just that, and Elaine Gottschall's book is called "Breaking the Vicious Cycle".

Some folks are lucky to have a GI who "crosses over" and believes in treating the whole person; therefore believing diet is crucial. We don't have a doctor like that, but I didn't care. It seemed logical to me that if the gut is sick, put the highest quality foods in there with absolutely no refined junk whatsoever. We're also big believers in probiotics. (Yet another thing our GI believes is unnecessary, while most folks here will tell you they believe them to be of significant value.)

I just re-read your post and saw that your daughter has been vomiting. I'm no expert here, but can't vomiting mean a possible obstruction? I know she just had surgery, but is it possible there could be some kind of complication going on in there? You might want to make a separate post about that to get specific feedback. Also, if you haven't already, contact the doc to let them know she's vomiting. Sometimes we moms have to get really, really pushy to advocate for our kids.

Again, I will keep her in my prayers!
Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.

Veteran Member

Date Joined Apr 2006
Total Posts : 1884
   Posted 2/9/2008 12:41 AM (GMT -6)   

The issue of dehydration is the most worrisome...if my daughter is in flare for more than 24 hours (for her that means vomiting and COMPLETE inability to eat or drink), then she will certainly go to the emergency room to be hydrated via an IV.

Daughter (20) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress and needing more fiber but landed in hospital in 3/06 with cramps, vomiting, stricture. Now in remission with Entocort 3 mg (one pill), SCD multivit, yogurt, vit D3 1800IU, 900+ mg calcium, 50 mg B complex vit, 25 mg iron. Off SCD diet but wheat was iffy so back on SCD modified to include potatos and rice.   

Regular Member

Date Joined Feb 2008
Total Posts : 132
   Posted 2/9/2008 9:43 AM (GMT -6)   
Again, thank you! I will take any info I can get. She sees a pediatric specialist regularly. We live in a populated area and he is extremely busy, it is hard to get in, as well as get hold of- I always get a machine and a nurse calls me back whenever they get around to it just to tell me she will talk to the Dr and get back to me which again takes what seems like an eternity. I have called the office twice this week, I spoke to the nurse Tues. am and again on Friday am and to my surprise the Dr actually called back that afternoon. He never seems to be to concerned. When I talked to him he didn't even have her chart, he was asking me what meds she's taking, etc. He did say, "Oh yes, she is my tall thin girl" (she is 5'9" and down to 116 lbs). Perhaps as a Mother I over react?! They make me feel like they don't have much concern and are playing a guessing game with my precious girl. I never know whether to call my family Dr or GI. As they tell me not all pertains to crohn's. After her sm. bowel follow through in 11/07, he said he would repeat it in 6 wks. and has not done so. It was shortly after that, I spoke w/ one of his team members on an after hours basis about a rectal problem. He sent me to my family Dr and they sent me to an anal surgeon. She had two abcesses removed at that time. I don't intend to bash him by no means he seems to be a nice guy and all. I just want her to feel better. What do you do and where do you go? Dr's are suppose to know best. As I stated she has become so frustrated. Until recently she has had such a great attitude. She says the diagnosis could've been worse and when they have discussed removing part of her intestines, she said "Oh it is a good thing I have many feet of them". Her state of mind has completely changed. She refers to herself as "broken", feels she will wake up sick everyday for the rest of her life, doesn't want to see anymore Dr's, says she should quit taking her meds and is refusing to drink boost, which he recommends she drink twice a day. She is a great kid all the way around, remains a straight A student in advanced classes, always is determined to help others and has such a passion for the Lord. She has at times, been mouthy which comes with age but now she has had outbursts of actually yelling at me. I am very patient with her as I know this can be expected. She is sick of being sick and says on a daily basis she wants to go back to before crohn's. To watch her outlook change and faith seem to be crashing is devastating. I apologize for rambling but I can't express how relieving it is!
She remains ill this morning. She was up a few times in the night, just not feeling well. She hasn't vomited since her small amount of dinner last night. She still has a low grade fever and feels blah. Her color is pale and has circles around her eyes. I pinched her skin to check for dehydration as that is the only way I know. I think she is ok w/ that. She is drinking small amounts of water. She has refused breakfast this morning so it is inevitably a matter of time until she medicates the commode with her am pills. The Dr. says he will see her first thing Mon morning. Do I wait? Am I over reacting?
Mother to 15 yr old daughter diagnosed w/CD 9/07.  Had col & endo in 9/07, small bowel follow through 11/07, surgery for abcesses 11/07.  Curently taking multi-vit, iron for anemia, bentyl prn, prilosec 20mg-x2, pentasa  500mg-x5, entocort-x3, 6 mp 50mg-x3.....still not doing well.

Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted 2/9/2008 10:11 AM (GMT -6)   
Welcome to Healing Well and the Crohn's Forum lil-momma,
I am Kitt and it is good to meet you. You will find the member of this forum to be warm and caring and extremely knowledgable.
Please let us know if you have any problems or questions about the site.
My email is post here on the site.....the little blue envelope on the left will open my email for you.
Again a warm welcome.
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
*~* *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~

Regular Member

Date Joined Feb 2008
Total Posts : 493
   Posted 2/9/2008 1:27 PM (GMT -6)   
I have been reading this forum for a bit and your request for help has prompted me to register and reply. I too was diagnosed at 13 years old--23 years ago. I have been with the same GI the whole time. When I get into a very bad flare, I bring my diet down. And slowly build up. I highly suggest that you try plain chicken broth with bread (even put the bread into the broth), teas, cream of wheat, jello, popsicles, lollipops, powerade (instead of gatorade), arrowroot cookies (the ones babies eat), bananas, apple sauce, scrambled eggs, watered-down orange juice. Ensure and Boost now have very good flavors. Ie. bring your daughter's foods down to easily digestible foods and slowly add in chicken, rice, cooked vegetables, and canned fruit. I am in my 4th week of a flare and have just begun to add in fish. As for the anal fistulas, I feel for her. I have had 3 lanced and currently have a recto-vaginal fistula and a horseshoe peri-anal fistula. A hot sitz bath with a little salt in the water will really help. Buy the basin at your local pharmacy--it goes right on the toilet (with the seat raised). The salt will draw out any stool or puss lurking around. Dry the area with a hair dryer on the lowest setting and apply some corn starch or baby powder. This is great for hemorrhoids too--which I imagine she may have with all the diarrhea. Tell your daughter I did this all the way through college--my sitz bath was always with me. Made a world of difference in my comfort. I hope and pray she will begin to heal.

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 2/9/2008 3:00 PM (GMT -6)   
Hello and Welcome. I have great sympathy for your daughter and you. I self diagnosed at 13, I wasn't offically diagnosed until I was 23, I am 43 now and I worry about my 2 daughters inheriting the disease like I did (my Mom had it). So I can certainly see your side too.

When your daughter's Small Bowel series came back off in November, did the Doctor explain what was wrong with it? Was there a narrowing, or were there ulcerations? If it was a narrowing, and with her current situation, as a mother and a CDer, if she vomitted again, I would take her to the ER. That to me would indicate that the narrowing had gotten worse and she needed further treatment and IV fluids. It is amazing how fast you get dehydrated. I have gone to the ER several times in the last few years (normally I can avoid the ER) for other issues, and each time I was dehydrated and didn't know it. I was doing the skin pinch thing and still I was very dehydrated. Since it is only Saturday afternoon, I wouldn't want to wait until Monday morning. As far as an obstruction, if she is having D, she could still be partially obstructed and that could be causing her vomiting. So I would be concerned if it continues.

The other question/suggestion I have is: As mentioned by someone else has your doctor talked about the biologics and have you discussed prednisone as a short term option until something else kicks in? I know prednisone is the evil drug, but it works very quickly and can give the other meds a chance to get into your daughters system and start working. It is worth having the discussion at least so that you know your options.

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.....

Veteran Member

Date Joined Nov 2007
Total Posts : 4051
   Posted 2/9/2008 5:01 PM (GMT -6)   
I'm so sorry for all that you and your daughter are going through. I am the mom of a 15 year old daughter...she does not have Crohn's or any IBD, but I know what an emotional time that age can be, even without the illness issues! You deserve a doctor who is responsive to you and your may help to have an honest discussion with the doc, and tell him that you do not feel he is taking her case seriously enough. If that does not work, then maybe you should switch. I agree with what others have is hard to judge dehydration, and she may feel much better with some IV fluids, so don't hesistate to go to the ER this week-end if she is not getting better.

I think it is totally understandable that your daughter is an emotional wreck with all she is going through. Once you get her medical condition stabilized, then she might feel dramatically better. But you also want to watch closely for depression, and take any suicidal comments (if any) extremely seriously and get help. She may benefit from counseling or antidepressant meds, but I'd first try to straighten out her medical crisis, as one seems related to the other. Good luck and keep posting to let us know how she is!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares

Veteran Member

Date Joined Apr 2006
Total Posts : 1884
   Posted 2/10/2008 7:05 PM (GMT -6)   

It's nerve wracking being a parent, trying to figure out what to do. I hope your daughter is feeling better!

The following link takes you to information from the Mayo Clinic about signs of dehydration. One way to tell is the color of urine...clear or light colored means you are well hydrated, but dark or amber colored shows dehydration.

Right after waking up in the morning, her urine might be dark yellow but could be temporary, because many people get dehydrated while they sleep. So the better way to tell is to see whether urine lightens later in the day.

Regular Member

Date Joined Jul 2006
Total Posts : 330
   Posted 2/10/2008 8:00 PM (GMT -6)   
I just wanted to know I feel for you and your daughter. This is such a hard disease to deal with, and when the symptoms are as bad as you describe about your daughter, it can be very discouraging for her. Hopefully she'll find a medication that works for her and she'll rebound quickly. The future can begin to look so much rosier when she starts to feel better again. It sounds like you're a very caring, understanding mom, and I sure she appreciates it. She sounds like a wonderful young lady who will rebound from this. Hopefully her doctor will help her out on Monday and she'll get some improvement soon.

Wishing you the best. Please keep us updated,


Regular Member

Date Joined Nov 2007
Total Posts : 497
   Posted 2/10/2008 10:46 PM (GMT -6)   

Welcome to Healing Well! 

I really hope you are able to find something to help your daughter!  I hope she starts feeling better soon! 

God bless and keep us updated!

Mormor Vicky
Veteran Member

Date Joined Mar 2007
Total Posts : 684
   Posted 2/11/2008 2:32 PM (GMT -6)   
Welcome lilmomma,

My daughter was dx'd when she was 12. I know how hard it is to be a parent. We are suppose to be able to make it all better. But sometimes we just can't without help. Just a bit of warning. My daughter also struggled with all the meds. Said that some of them made her feel worse than the disease itself. We were blessed that she only had mild disease, even though she is prone to fistulas and abcesses. When she turned 18 she totally rebelled about her condition and decided to not continue her medication or see a doctor about it.

She has 3 children, is now 27 and doing okay. Minor flares but able to control them with diet. I spent most of the day with her on Saturday and noticed that she went to the restroom at least 12 times. I worry that she will hit the wall one of these days.

I know how much better I feel now that I'm on medication. I keep telling her that and she still says she is doing fine. Personally I don't think so but she still is stubborn, even though she has promised that she will go to a GI when she gets married and is on her husbands insurance next month.

I guess I'm trying to say, keep your daughter involved in her care and let her make some decisions. I think I was over protective and tried to spare my daughter as much as possible. Get her involved and give her books to read so she can be informed. I became very knowledgeable about this crummy disease but I tried to sheild my daughter as much as possible. Maybe that was a big mistake.

I hope this helps you.
Vicky / 48 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
Daughter (27) also has Crohn's since she was 12.
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor

Regular Member

Date Joined May 2007
Total Posts : 76
   Posted 2/11/2008 3:41 PM (GMT -6)   
Hello lil-momma,

Reading your posts and everyone else's, it seems to me she should be in the ER (just my opinion, based on how my doctors handle my case). I've also had Crohn's for many years (but diagnosed wrong at first). I am in with my GI every week now for my case, and I am on Humira. So far no effect, but I'm still hoping...

If she can't drink water that's not good. A year ago I had that happen to me - I was laid up in bed for weeks, unable to walk, eat, drink.... I had to go on medical leave. I remember that pain and I dont wish it on anyone. I handled it on my own and did not go to the ER but in hindsight I wish I did. Even if it was just to get fluids. If she starts to get dizzy, or if she's still refusing liquid today, you might want to consider taking her into the ER.
Diagnosed with UC 8 years ago/Diagnosed with Crohn's 6/26/2007
Canasa / 1 per day
Azathioprine / 100 MG Day
Colazal/ 9 per day
Entocort/ 3 per day
Asacol / 12 per day
Levaquin 1 per day
Flogyl 1 per day
Rowasa / 1 per day
Prednizone / 40 MG Day( finished taper!!!) 

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