Sesnitivity to smells

[Penny123]

Hi! I am new to this and learning how to work a forum. My 14 year old daughter has had crohns since age of 7 and now is very sensitive to smells. Unfortunately, there is a child who has strong body odor and my daughter says she starts to gag when she has to sit near her. Also, she has pain on and off in her upper left abdomen which can be quite severe at times. She is currently on Pentasa 8 capsules a day, Methotrexate injections 25 mg every week and Zofran for nausea. Curious if this is common?

Thanks soo much!

 

[Tesscorm]

Hi Penny,

Welcome to the forum You've certainly come to the right place to ask questions! Lots of very experienced parents and member here... the knowledge and support I've gained has been invaluable!

As far as smell sensitivity, that's not something my son has ever mentioned???

Regarding her pain, does her GI know what's causing the pain? There's recently been some discussion in the parents forum about what defines 'remission', I think in most cases, the lack of pain would be expected in remission (although, as your daughter is not newly diagnosed, I'm sure you know that 'remission' can be difficult to determine and there often seems to be frustratingly unexplained 'incidences' with crohns! :facepalm.

What tests has your daughter had in trying to find the source of the pain?

I'm sure you'll be hearing from lots of other parents soon, they may have some info for you re the smell sensitivity and/or pain.

:ghug:

 

[DustyKat]

Hi Penny and :welcome:

My daughter use to have a particular aversion to one smell...chocolate. It doesn't bother her now but when it did she absolutely hated it and this issue lasted for probably 3 or 4 years. I don't know in her case if was related to her Crohn's but thinking back I do think it started at around the same time she had symptoms and was then diagnosed. She also had OCD tendencies, I was unaware she had them (she told later about them and they were related to her counting things!), so it could have been related to that??

Perhaps medication is adding to or creating the heightened sensitivity to smell?

Where is your daughter's Crohn's located? If it is the large bowel and affects the transverse and into the descending colon it may produce pain in that region. Another thing to consider is the pancreas, pancreatitis is an EIM (Extra Intestinal Manifestation) of Crohn's
Methotrexate can also cause pancreatitis although that is a very rare side effect of the drug.

I see you asked in one of your other posts if anyone else had HLH with Crohn's. I don't recall seeing anyone here. Putting HLH into the search did pull up a member that has a son with HLH but she has not been active on the forum since October 2009...

http://www.crohnsforum.com/member.php?u=18394

...the only other reference to HLH is in research articles.

Dusty. xxx

 

[Derby Girl]

I'm not a parent, but I can speak with personal experience, I was diagnosed in 2005. I have a sensitivity to smells and it seemed to get worse when ever I was on steroids. Body odors made me especially ill, but I would just try to avoid those people as much as possible. The last thing I wanted to do was to embarrass someone. However, if this is a child at school you may be able to talk to the teacher about it and hope they can take care of the situation in a respectful way.
As far as the pain in her upper left abdomen it could be her kidney. I had a sharp pain that would come and go in that region and my GI couldn't find anything wrong. It go so bad I had to the ER. They did a CT scan and saw that I had a 6mm kidney stone. Apparently the stone was caused by dehydration and my medications. Unfortunately with Crohn's we can't always assume it's GI since there can be so many other side effects to the disease and the meds.
I hope she gets some relief soon!

 

[Penny123]

Thanks for all the input! It is difficult not really know what is going on. She has been having bloody stools once to twice a week. They said this can happen. They are not really worried about it. We are to have blood work and fecal cal protectant done in a week. IF that is normal then they will do an ultrasound. My daughter says it is a squeezing pain and can be soo bad she doesn't want to move. She does have 2 kidneys on that side but the doctors really feel it is just cramping from Crohns. Does anyone else have upper left abdominal pain with Crohns? Her case is complicated with this HLH and she gets blood work frequently (every week and now decreasing to every couple weeks). Her Ferritin is very low at 6 but HGB is 11.2. The frequent blood work was to watch for HLH reactivating. If it reactivates she will have to have a bone marrow transplant. We were lucky we didn't have to have it 5 years ago. If it comes back it is automatic. I guess I will always worry. I know Crohns can be so different from each person. So many people don't understand it at all. I appreciate being able to vent to all of you. I will keep all of you in my prayers. We are lucky in so many ways and do count our blessings!

 

[Hope345]

Penny123,

Welcome to the forum.
My daughter is 14 as well. she was diagnosed last year with Crohns Colitis.
she hasnt mentioned the smell, but I know hormones can play a part with that as well as just feeling nauseated. I hope she is able to sit in a place that works.

We had to start doing home school right before this last Christmas because of the non stop pain, bleeding and inflammation. She currently has had 2 weeks of no symptoms.
She will start high school this fall.

I noticed you said she has blood in her stool. Is that a symptom she has had all along?

You are right, most people do not understand what our children or others are going through with IBD and what they deal with on a daily basis. This forum has helped so much. We can all vent to each other

wish you and your daughter the best

 

[Penny123]

Thanks Julie! It is so nice to be able to vent and not be judged. Jennifer never really had bleeding till she developed a peri rectal abscess in November. When she was diagnosed at age 7 she had terrible red areas all around her lips and a perirectal abscess which she had to have surgery on. I know we are really lucky compared to a lot of Crohns patients. The thing that complicates her situation is this HLH.

I am so glad to hear your daughter has 2 good weeks. Sorry to hear she has been home schooled. It is so difficult. When Jennifer came home after a month of being in the hospital on a ventilator from HLH she was immunosuppressed for 6 months. She wasn't allowed out in the world unless she wore a mask. The hospital suggested we skype school. It was great because she could see her friends and she could set it up so they could or could not see her. The sad thing is 6 months out of school, her friends moved on and I became her best friend. I think she is stronger because of this.

Tell your daughter I love her saying about learning to dance in the rain. We continue to learn to live with Crohns and HLH.

Since yesterday's post, my husband and I decided to give the Mom in charge of room assignments a copy of the info on Crohns and HLH. I believe it will solve our washington trip.

How often does your daughter have blood? Jennifer has diarrhea on and off. It can be bad for a day or two then nothing for 5 days. The bleeding isn't a lot but is there.

Thanks!

 

[CarolinAlaska]

Hi Penny. I'm sorry, but what is HLH? I think I must have not gotten to your other post? My daughter is almost 14. She is homeschooled right now by her choice. It is much less stressful for her and she is out of the junior high drama! If your daughter wants someone to email, she would probably be open to it.

I'm so sorry your daughter has had such a rough road to travel .

As for sensitivity to smells, that hasn't been a problem here. We certainly get our fair share of making bad smells in this house, though! Ugh!

 

[Penny123]

Carol,
HLH is an immune problem. It can be caused from being immunosuppressed then developoing mono, chicken pox or cytomegaly virus (CMV) or any infection. Jennifer's was caused from being on 6 MP and developing CMV. You become very ill very fast. She had heart failure, kidney involvement, lung involvement. It is really complex. They told us she was going to die. WE proved them WRONG!!! It begins with fever which doesn't respond to medications and keeps climbing. If you google HLH and Crohns you can see there is a coorelation. There are 2 types of HLH - - genetic and secondary. We were told hers was secondary and we responded miraculously at that time. However, two years later we get a call that they had discovered a new genetic mutation which she has. At the time she had HLH if they would have known of the genetic mutation she would have automatically had a bone marrow transplant. It is a rare condition but they think it there are more cases which are misdiagnosed. Jennifer has STXBP 2 mutation. I worry about where do we go from here if things don't respond. We were told when she had HLH that she should NEVER go on an immunosuppressive drug ever. Well...most treatments for Crohns are immunosuppressive drugs. I have been nervous on the Methotrexate. Jennifer had been on 6 MP for about 6 months when she developed HLH.

Hope you have a good day! I am going to go Mulch since we have 60 degree weather today.

Thanks!

 

[CarolinAlaska]

Penny! How awful! No wonder you are worried about the Methotrexate! Have you tried the EEN or LDN or considered other alternative therapies? I'm glad you have a good doc and I'm so glad your daughter proved the docs wrong and lived!

 

[CarolinAlaska]

PS Enjoy your mulching. We're still trying to get rid of the snow with 40 degree temps. I'm loving the sun though!

 

[Hope345]

Penny123:
thank you for your thoughtful response.
Our daughter bleeds every time she has a bm (a lot), but now that she uses cortifoam, the bleeding and pain in that area is gone. We tried going to every other day but she needs it every day to keep the bleeding, pain and inflammation down in the sigmoid colon and rectal area. She also has it near the appendix which must be controlled by Remicade and Asacol.

B's friends also moved on with out her. Yes, they absolutely have us moms Does your daughter do Facebook or text to keep in touch with some of them? I have to admit, I am glad we dont have to deal with the drama of Jr High too. although, I would have loved for her to be able to attend to school. Your daughter sounds very strong.

Carol's daughter, Jaedyn, is so sweet and is very willing to talk with others.

I hope your daughter gets the right meds for her to keep her Crohns under control and how is she doing with her HLH? Is that something that can be controlled with medication? I have not heard of that either.

 

[Penny123]

Soo sorry to hear the trouble she goes through. B is lucky to have you! Jennifer doesn't use facebook. She goes to school so she sees these girls but the group is very clicky but have been friends since toddlers. Luckily Jennifer is strong.

HLH can't be controlled with medication. You have to watch for it. Fevers scare me because she started with flu like symptoms and fever. Usually you have a bone marrow transplant and sometimes you need multiple transplants. You have to be treated with chemo just like cancer. A lot of children don't make it through the process. We were lucky we didn't need bone marrow transplant (not common) and hopefully we will never see it again. We were told she would never be on immune suppressive drugs ever but now they are looking into possible Humira if the Pentasa and Methotrexate don't work. I tried to see if anyone else has HLH and what treatment plan they are on. I googled it and all I could find was one case and they were on and off prednisone.

How high has any of your fecal cal counts been? Just curious how high other peoples have been.

Didn't finish mulching at my Dad's because I went to buy some new shrubs. Next will be our house. Glad we have no more snow. Some friends took a cruise to Alaska and said it was beautiful.

Hope you all have a wonderful day and week!

 

[CarolinAlaska]

My daughter's Fecal Calprotectin was about 650. We are waiting for another result now (usually takes a couple weeks).