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Newbie, family with Crohn's.

Hi there! I'm Nike, from the US. I don't have Crohn's myself, but I joined because I don't know half as much as I should about Crohn's and I have 3 chronically ill family members, and several more prone to being chronically ill in the future.

3 years ago, I moved in with my sweetheart and his family. There are 10 of us total (His mom & dad, my boyfriend, his older sister and younger sister, his older sister's 3 kids, and then there's me and my other "sister" who were taken into this home years ago.) I love my man, and his family is my family; I have never been so happy as I am here at home.

However, my years of maturity were spent with my biological mother and her alcoholic, mentally and physically abusive boyfriend who was 20 years older than herself. I was trapped in the middle of an alcoholic, codependent relationship and suffered PTSD, depression and anxiety by the time I left. In fact, those things didn't really become apparent until I left because I had something to compare my emotions with: love! Now, I am much more equipped to deal with the well being of others, since I have come to understand my own problems. I want to seek knowledge about my boyfriend's mom's disorder.

His mother was diagnosed with Crohn's several years back. She has been in the hospital for Pancreatitis three times since I've lived here. She is also diabetic, and has many joint problems. She will have to take pain medicine for the rest of her life.

So will my (boyfriend's) older sister. After her 3rd child was born in her late 20s, she started to have health problems. She was diagnosed with Hashimoto syndrome about two years ago. That is an autoimmune disorder involving the thyroid. She also has a squished pituitary gland. Yes, squished! She has many problems, especially endocrine oriented things. She has to take hormone injections every day. Since she has to rotate places, she taught me how to give a shot the right way and I help her when she can't reach.

My boyfriend's younger sister (who is very close to me because we were friends in high school) has IBS. (Their) Mom believes strongly that she suffers from Crohn's as well. She has had problems with her stomach and bowels since she was a kid. She just started seeing a new primary care doctor, and she's getting a TON of blood work done to see what's wrong with her. She has anxiety issues as well. I don't know if Crohn's can be a cause of (or somehow related to) anxiety issues. I know that she isn't afraid of having a certain health problem, but she is very afraid of the unknown and hates being in the dark, medically speaking; the waiting is killing her.

My (boyfriend's) older sister, the one with the pituitary/thyroid problems, has a son who is also at risk. Not for Crohn's, but for something called "Acromegaly" which like his mom's disorder, involves the pituitary. It's where your pituitary produces excess growth hormones. I'm wondering, that's likely genetic, correct? He is 15 years older right now (the elder of a 9 year old sister and 5 year old sister who are so far, healthy.) He is getting tested for this. My 15 year old nephew is 6'1" with massive hands and size 15 feet. My (boyfriend's) mom said that if he does have this disorder, he can end up having heart complications and a shorter life span. Fortunately, if what she says is true (and she's pretty savvy) it can be treated and its symptoms are completely manageable; that being said, it's best when caught early, like most things.

Needless to say, someone is always ill in my household, especially Mom and her eldest daughter. I wasn't always the most sympathetic person; I was taught by my mother's crazy boyfriend (and the foster system before that) that people should pull their own weight, deal with stuff alone and let everyone else fend for themselves...which is completely contradictory of LOVE! For the time I spent working through my own emotional issues, I wasn't as loving as I wish I could have been because I put a lot of energy into understanding myself. My lover's mom REALLY helped me through all of that. She has been a wonderful mother, and the perfect person to lean on. I want to learn everything I can about her condition, and the condition of her daughters and grandson and everyone else here, so that I can make up for the time I spent focused on me...because now I'm ready to help other people.

"Mom" feels very inadequate at times. She LOVES to cook homemade meals for the whole family. But that's 10 people, and she has problems standing for that long. Sometimes, her hands will go numb and it frustrates her because she's doing something important. Sometimes, her medicine makes her too sleepy and she starts to fall asleep standing up. She has hurt herself like this. In the past, she'd be holding something like hot coffee, and she'd fall asleep or her hands would go numb, and she'd spill everywhere. She feels the need to do ALL the laundry, even though the rest of us are capable. She's a mom, through and through. And she feels like all of these things are embarrassing. She gets so fed up with herself sometimes. I want to be in this community, on this forum, because I want to know what kind of support works best in this situation. And I know that her elder daughter feels this way too because her hormones do strange things to her, like make her have uncontrollable pain and fevers, or get very moody or sleepy. These things aren't their fault, but I want them not only to hear it, but to KNOW I still respect and love them regardless of these things.

Mom is sad that the youth of my generation (I'm in my early 20s) don't really go to their elders for advice. So I would really like the advice of my elders. Also, people my age, because if it's genetic, my future children could have it as well and I want to be the best mom I can when that time comes. And I want to be the best (adoptive-esque) daughter and sister I can be so I can support them.

Well I hope that summed it up, and I hope it wasn't TOO long and awful, haha. If you read this, thank you. I look forward to understanding much more about Crohn's and related diseases and disorders. Again, thanks <3
 

David

Co-Founder
Location
Naples, Florida
Hi Nike and welcome to the community! It says a lot about what an amazing person you are that you joined and want to learn more about Crohn's. Good for you! And there is SO MUCH to learn. And yes, by you learning, it's possible for you to make a huge difference in your loved one's lives. A few things:

1. Have they all been tested for vitamin B12, vitamin D, and folate deficiency? Some of the things you mentioned made me wonder about them.

2. What is everyone's diet like? Healthy? Not so much?

3. Is the mother on metformin for her diabetes?

4. Anxiety isn't uncommon in people with IBD. Heck, it's scary! However, it can also be related to some deficiencies in vitamins like vitamin B12.

We're here to help you and your entire family in any way we can.

All my best to all of you :)
 

Judith

Crohnsforum Science Advisor
Welcome to Crohnsforum. I love how supportive you are of your family and their health issues (applause). I hope we can help!

Regarding your question whether Acromegaly is genetic.... it can be genetic but it can also arise randomly.

Here is a paper that might be of interest to your family health situation:
Gastrointestinal motility disorders in endocrine diseases - Includes information on Thyroid Disorders, Acromegaly, Diabetes etc and how they can relate to GI Tract motility problems. I hope it helps.

Welcome again and thank you for being so supportive of your family. :)
 
Hey David! It's nice to meet you! Thank you GREATLY for the support and the advice. I'll answer to the best of my ability without saying something that my mom would want to keep confidential (although she's thinking about joining up herself! I just have to teach her how the internet works one more time, and then hope she doesn't see this statement...)

1. Have they all been tested for vitamin B12, vitamin D, and folate deficiency? Some of the things you mentioned made me wonder about them.

Well, I know B12 is the vitamin for energy because I take tablets myself (much healthier and cheaper than energy drinks!) Not entirely sure what D is, other than it's in some milk. I do know that my mom has Fibromyalgia (hope I spelled that right.) So she lacks a lot of energy. She wants to start taking yoga so she can build some basic muscle back and get more flexible and energetic. But taking that first step is the hardest. Did her symptoms make you think there was something she might have?

2. What is everyone's diet like? Healthy? Not so much?

Well, to put it bluntly, we're lower class. Dad works. My boyfriend and I are students. We do get quite a bit of financial aid, which is good. And my sisters are currently on the job hunt. But right now, we have to live on minimal income and sometimes, food is hard to shop for. Mom is very health conscious, but we can't afford good vegetables all the time. So, when we CAN afford it, our diet is REALLY good. We're talking home made stews, local meats, the works. But...she does like sweets, and she's diabetic. There have been SEVERAL times when she's said "it's okay to eat this one thing, don't worry" and then, she's in the hospital. It worries me to no end. I am not good at telling someone I'm worried about them without coming off rude. I'm not meaning to be rude...I just worry myself into a panicky stupor. I want her to eat less sugar. And probably less butter. She's Swedish and she grew up cooking with butter. I'm pretty sure her blood type is D.C. (Danish Creamery.) Any advice for helping mo mom would be appreciated. I mean, telling her I worry about her without sounding mean.

3. Is the mother on metformin for her diabetes?

I will ask her about this, and I'll get back to you ASAP.

4. Anxiety isn't uncommon in people with IBD. Heck, it's scary! However, it can also be related to some deficiencies in vitamins like vitamin B12.

Again, thank you so, SOOO much. This was all very helpful. I hope my mom joins too. Everyone is so nice. And when someone is sick, support and help are always something good. Thank you for teaching me about these things. I'll talk to my mom about the meds she's taking and I'll let you know! :)

And to Judith, thank you so much!

Thank you so much for the paper! I can't even believe how supportive this place is. It's wonderful! Thank you for getting me that paper. It'll be good to understand my nephew's condition (presuming he has it) but it's likely.

Again again and again, THANK YOU GUYS!!!!
 

David

Co-Founder
Location
Naples, Florida
Well, I know B12 is the vitamin for energy because I take tablets myself (much healthier and cheaper than energy drinks!) Not entirely sure what D is, other than it's in some milk. I do know that my mom has Fibromyalgia (hope I spelled that right.) So she lacks a lot of energy. She wants to start taking yoga so she can build some basic muscle back and get more flexible and energetic. But taking that first step is the hardest. Did her symptoms make you think there was something she might have?
Vitamin D is extremely important for a wide array of bodily functions. One symptom of deficiency can be bone, muscle and/or joint pains. Lack of energy in people with IBD can be from a variety of causes and vitamin b12 and vitamin D can contribute to that fatigue. It's a good idea to get them tested as such deficiencies in people with Crohn's are common.

3. Is the mother on metformin for her diabetes?

I will ask her about this, and I'll get back to you ASAP.
The reason I ask is metformin can also increase the chance of vitamin B12 deficiency.
 

Judith

Crohnsforum Science Advisor
I am not good at telling someone I'm worried about them without coming off rude. I'm not meaning to be rude...I just worry myself into a panicky stupor. ......I mean, telling her I worry about her without sounding mean.
I have this EXACT same problem. When you figure it out please let me know.... :)

This was all very helpful. I hope my mom joins too. Everyone is so nice. And when someone is sick, support and help are always something good.
I hope she joins too!
:)
 
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