Being a Mom during a flare...

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suschex

suschex

Suzanne
Joined
Oct 22, 2011
Messages
315
I love my kids so very much...they are my heart and my happiness! It is just so hard sometimes to devote my days to them being a stay-home-mom when this disease seems to demand all of my attention.

Now 9 weeks out from being diagnosed with CD, finding out I am steroid resistant, starting on Humira and tapering off pred (down from 40mg to only 10 now) I find myself feeling so sad at how much of me they have lost, even if it is just for the time being. They struggle so much at just 5 and 6 years old to understand what in the world is happening to their Mom. I know kids are resilient and will come through this just fine but it just is hard to see that thought the darkness sometimes.

Just feeling sad and angry at the disease today....wondering if there are other parents with CD out there who feel the same way
 
I remember those days. My kids are grown and no longer live with Mommy. They are now my "caregivers" when needed. They pitch in and help. If one of the boys calls me and I sound the least bit yucky, they want to drop everything and bring me "something". A couple of years ago, the three of them were all home, and I said I was sorry that they had to grow up with a mom that could not always do the things she wanted to with them. They smiled and started talking. Some of their cherished memories are the times I felt horrible and we just watched movies together. I still feel guilty when my daughter comes to town and I am not feeling 100%. I have a wonderful relationship with my trio. Sometimes I think Crohn's played a part in making them the caring individuals that they are. *hugs*
 
I do feel that way. Mine are 4 and 5. Anytime they see me laying down, they ask if my belly is hurting. They understand why I use a heating pad. I've told them I have something called Crohn's and it makes my belly hurt a lot and makes me use the bathroom. They pick up on things pretty quick. I'm lucky that my hubby doesn't mind picking up the slack around the house. I've been in this flare for 13 months, and I do feel like I'm missing out.
 
Honey I hear you. My son at the age of 3 had to basically become independant and take care of himself. I was so tired all of the time(due to severe anemia and waking several times at night to empty my bowels. I feel he missed me as a mother. Even now that I'm getting treated and on medicine I'm still anemic and tired much of the time. I take naps on the couch a lot and he's always comming over to talk to me. I feel like such a bad mother. I am also starting remicaid so I hope soon after that I'll be able to take care of him and become the mother he needs and deserves.
 
I don't know how you do it! I've always thought I wanted kids. Maybe its just because thats the direction society puts you in. Sometimes when I'm feeling bad I just wonder how I would do it if I did!
 
mizgarnet - it is so good ot hear that fond memories were made even during the tought times. I know that this disease has slowed me down and in some ways given me more time just calm and quiet with my kids. I'm so glad your kiddos are so supportive and loving for you even as adults!

Stephanie - it really does help to have a husband who is willing to fill in the gaps! My youngest calls it the Crohn's Monster and always wants to know if it is asleep or not...every night she wants me to promise that I will be better the next day, it is so hard to have to tell her we will just have to wait and see. I'm so sorry you have been in a flare for so long...how is the Cimzia? I haven't heard anything about it from someone on it yet.

lookame - i know what you mean about the anemia...mine is getting better but still a struggle. I hope the remicade is the answer for you...do you get to start soon?

Holly - you are still so young, lots of time to decide about kids...I had mine at 33 and 34 years old. Even when I am at my sickest, I am able to do what they need me to...somehow, once you are a mother, you seem to be able to dig deep and find the strength to give them what they need....not always all you want to give them but for sure what they need. Also, like Stephanie said, it helps to have a good husband to bridge the gap!

Thank you guys so much for sharing your feelings about motherinng during a flare...helps so much to know I am not alone!
 
I completely understand how you feel. Although, my baby is only 8 months old right now, so she really doens't know what's going on. I feel terrible because I've been so ill lately and would just rather be able to rest on the couch and not have to chase her around or get up, or put her down while she's screaming while I make multiple trips to the bathroom.

I love my baby to death, but its been so hard to take care of her and to not get frustrated with her. Hang in there!! You're definitely not alone in this matter!!
 
Oh Manzyb - it was so much harder (at least physically) when my kiddos were that young....I remember just crawling on the floor to get to them and change diapers or what have you...my heart goes out to you...big hugs!

Oh, and your "Sadie bear" is just a beautiful little doll!

Suzanne
 
It is very rough. I'll be having a resection here soon and I'm hoping that will turn around my nastiness feeling and help me be able to cope better with taking care of her! On days that I stay home with her I make sure I have everything I need within reach in the livingroom so I don't have to run around the house all of the time!


and THANK YOU!! She's such a sweet baby!
 
The Cimzia isn't working. I started to get better (never reached remission) for a couple months, then went downhill again. We added Imuran 10 weeks ago and it's not helping yet, either. I'm giving it until my January appointment, then I'm ditching all 3 (Imuran, Cimzia and Apriso) and switching to Remicade. In the meantime, I'm doing an elimination diet to try and get things under control. I just started week 3 of no dairy, gluten, soy, egg, sugar, and no improvement yet. I'm not giving up, though!
 
Stephanie - I'm sorry it isn't working for you...can't imagine your frustration at this point! You have a good attitude about not giving up! Hope it turns around soon!
 
Aww sus :hug: If it's any help to see it from a kid's point of view, I was around 7 or 8 when my Dad's crohn's got really bad. Both he and my mom didn't want me to get scared, so they didn't fully explain to me what was going on. I just knew he needed to lay down a lot and his tummy hurt. But you know what, it didn't matter to me that he couldn't play soccer and wrestle until the sun went down. I just wanted him to be there for me, and he always was. He's still my hero.
 
Cut yourself a break on the bad days/weeks/months

I have a 6 and 8 year old and my suggestion to you (and to myself - I need to remember this on my bad days) is to give yourself a break when you are flaring. When I was flaring I would put on a movie for my pre-schooler and nap on the couch with her next to me. At the time, I felt guilty we weren't going out to the playground, going to the zoo, etc. Looking back I realize it was fine. It may not have been the way I would have liked to have spent my time, but it was the best way for me to (try) to heal and she was safe and by my side.

Other suggestions - make the easiest meals for your children (sandwiches, breakfast for dinner, roast a chicken during the afternoon).

Let things slide that can slide (cleaning).

Ask for help from your husband for things that are too difficult (giving children baths).

Get help for things that you can (cleaning, shopping).

Get as much rest as you can.

Flaring while raising your children is hard, but you can make it through! I don't think my kiddies are harmed by the times I haven't had the energy to be the mom I wanted to be.
 
hi, im was in the situation for a year when my husband was deployed last year to july of this year... it was just me and my 1 and half year old at that time.. but as he hit 2 years old it was really hard on me while i was flaring and having to take care of him.. i would just like someone said put some cartoons on and lay down either in my room with him or in the livingroom and sleep as much as i can.. its hard but you have to rest.. it was hard to see my son having at that age know where to find something to eat and getting it without bothering me and eating and then coming and cuddling and sleeping with me.. it was also hard when you have to shower them and change the diapers, i had to crawl on the floor to change his diapers and bathing situation was worst.. only god knows how we get through those days but we do.. hes 2 and he understands even at that age when mummy is not feeling well i will tell him and he will be on his best behaviour till i get better..
 
I can totally relate and understand what everyone is saying....My daughter is 13 months, and i'm flaring pretty bad right now. She's watched more TV in the past week than in her whole life.....But it's just how I can cope. She's pretty good at playing by herself most of the time, but there's also lots of times she just needs Mama. I give her all I have, and I, too, have an amazing hubby who is working full time and picking up the slack around home, and with her.....He rocks her in the night because I can't stand to hold her in the cradle position, it's too much on my tummy. All of you are doing a great job, and the kidlets get through...And as someone mentioned, I think it really helps them to be caring, loving kids. :) My mom had Crohns growing up, and I never once felt neglected or unloved. :)
 
My son is a bit older now, he's almost 8 and is in school during the day. When he was a baby, I remember breastfeeding him while sitting on the toilet. Crazy, huh? I spent a lot of time lying on the couch with him.

He's pretty much always known I've been sick. When he was younger, we called it a "tummy owie". Now he knows it is Crohn's Disease. He has expressed anger about it over the years, and says things like "I hate your intestines" and such.

I say do what you can. Reach out for help when you need it. If it means taking all offers of babysitting you get (or ask for) then do it.
 
Jonny C. and Mizgarnet- Your storys brought tears to my eyes. I am a mom of 6 and have Crohns Colitis, sometimes I feel like the worst mom in the world because I haven't been able to be the "betty crocker" mom. I feel like my kids are ruined because I can't always play with them the way I want to.- Your storys are encouraging to me.
 
Crohn's and being a mum or dad what a combo.
My two children are under 4yrs old and I too have crawled on the floor to change nappies, have fed them while they were still in their cot or pram as I couldn't lift them out, I had nights were they cried and I couldn't hold them as my tummy was so sore, they have sat on the couch watching tv while I napped but with all that said I take care of my children and we have the best of times when I'm well.
We all look after our children to best of our abilities, some children are born into some very sad and bad situations with parents who don't care or don't even want their children.
Don't ever beat yourself up if you can't give it your all every day, we love our children and they know they are loved and that's what counts.
 
Darling, I hear you! I used to think being a mom was the toughest job in the world, now I know dealing with a chronic debilitating disease is much harder. I've been in a horrible flare since May 2010 and feel like I haven't been there for my sweet daughter. The truth is I haven't. I've been in and out of the hospital and completely debilitated by my symptoms of pain and nausea and fatigue. It's been particularly difficult because up until very recently I didn't have the support of my husband. My daughter unfortunately had to see me in the hospital in horrible pain, literally moaning and crying until they finally gave me morphine. I know it scares her to see me this sick and that bothers me. She has taken on the role of caretaker and that makes me very sad. I even have trouble at this point driving her to school and taking her to her extra curricular activities. My husband has had to take over absolutely everything. My career too is on hold. I want to be a good example to my daughter, and show her how to be a vibrant, strong , successful woman. Lately, I'm just the girl on the couch, moping around in my PJ's. I start Remicade in a few days and I am hoping for a miracle. If I can just have time periods when I can be the vibrant person I am when I am well.... Will I ever be well again is the question? I want to be there again for my family. They are more used to me taking care of them. Good luck to you. It seems we all have different struggles with this disease.
 
I'm a dad with Crohn's and I can imagine how much harder it would be being a mom with Crohn's. My kids need me but not in the same way they need their mommy. That being said, it can be hard. I have those days after the bad nights, it's hard enough to get out of bed. In a lot of ways they give me strength. I had a lot of days before the kids where I would just sort of lay around and try to feel better. You can't do that with 3 kids. Plus I always feel horrible to ask my wife to do more than her share. It's hard being a parent, harder when you also have to take care of your husband. That's probably the greatest guilt I've had in my life. :pale:
 
Kind of felt this way this morning. Currently dealing with a bit of a flare and a cold. I am a morning person - the one who gets up when our 6 1/2 month old wakes up in the morning (through the week this fits in excellent with the schedule). This morning, I just couldn't do it - I was too tired - had to let my wife get up and I wwnt back to sleep for a bit - I guess I needed the sleep.
 
Honestly, Mom or Dad, it is just hard some days to push on when feeling so poorly. It's amazing though, on the other end of that is a smiling face that offers unconditional love, disease or no disease!

I'm so glad we are all just doing the best we can and knowing they will become amazing adults faster than we can imagine!!!

:ghug:
 
Jonny C said:
Aww sus :hug: If it's any help to see it from a kid's point of view, I was around 7 or 8 when my Dad's crohn's got really bad. Both he and my mom didn't want me to get scared, so they didn't fully explain to me what was going on. I just knew he needed to lay down a lot and his tummy hurt. But you know what, it didn't matter to me that he couldn't play soccer and wrestle until the sun went down. I just wanted him to be there for me, and he always was. He's still my hero.
Click to expand...

Thank you so much for shariing your memory of growing up with a parent ill with Crohn's! It touched my heart and gave a great look from a child's eyes. It is hard as a parent to remember that we are positioning (for our kiddos) how they see the world...they came into it without any pre-set context for things being "good" or "bad", "easy" or "hard", etc.

I am so happy you have those memories of a parent who was there for you exactly as you needed!

Oh, and good luck on your marathon...you will love it!!!:thumleft:

Suzanne
 
Nothing has broken my heart more than how sick I have been this year. I am doing much better now, but I had a 3 week hospital stay over the summer, and spring of last year I was still having tests constantly. I spent a bit of time feeling like I had all that time I could have spent with my daughter taken away from me. Just wondering about what she was doing and learning when I was sick, first words. walking.

I wondered sometimes if she was aware of what was going on when my family would bring her to see me in the hospital. They told me that she would say "Go Momma" when they got in the car, knowing they were taking her to see me. I have to say, her coming to visit me was the motivation I needed at the time. Holding her little hand made me stay more positive on finding a treatment and staying on the path to health.

It is incredible how perceptive children really are. I remember I had my IV moved to my hand before I went into a surgical procedure one day. My daughter and my uncle were in the waiting room and later the recovery room with me. I started crying, my daughter had held her hand up the way I was holding mine with the IV in it. She pointed to my hand and said "Momma's Booboo". I really was hoping she had no idea what was going on at that time. I hope I can make her childhood as happy as possible, and sometimes I worry how her having to watch me being sick is going to effect her later on.
 
I've been scouring this forum day and night for months now since I've been bedridden with my worst flare ever, and I can't believe I am just now finding this thread. All your stories are so touching and made me feel so much better just knowing that I'm not the only mom beating herself up for not being the carefree, fun, active mother that my sweet little girl deserves. It kills me.

I guess I was lucky up until recently, my crohn's has never gone into remission except when I was pregnant, but the medications helped me to get by well enough to be the strong independent mother figure she needed. I suppose I pushed myself too hard between working a full time job at my father's company so I could bring her to work with me the days that I wasn't at school (also taking a full course load to finish my degree), and being a single mother with no contact or support (financial or otherwise) from her father. Now all the conventional treatments have failed me. I've had five surgeries in the last eight weeks for various abscesses and fistulas.

I can't help but wonder about the mothers in situations like mine, but don't have nearby family to help with their children when they get sick... I couldn't do it without them.

Luckily, I've been accepted into the Stem Cell Transplant Trial. Every time she wakes up in the night because she hears me up sick, we sit there and talk about how *hopefully* after mommy gets the transplant, we can have normal lives, and do fun things again. I've just got to survive the next couple months until then. Honestly, I don't care if the treatment kills me 15 or 20 years from now. I just want to have 5-10 GOOD years with my little one, and have real quality of life, and have the energy and strength to be a good example and raise her the right way.

The stories from those who have parents with Crohn's are especially touching. I never would have thought that your fondest memories would be the one's curled up with your mom when she wasn't feeling well. It's wonderful that those experiences created the caring people you are today. I can only hope it will have the same effect on the rest of our children, and I just hope they don't resent us too much! Although, at some point, all kids will find an excuse to resent their parents... oh lovely- just can't wait for those teenage years! LOL! They will DEFINITELY be the death of us then!
 
Hey there. I know exactly how you feel. I have a 10 and an almost 3 year old and am now a single mom and it's hard. There are days I don't feel like moving, but somehow we all manage. My mother was diagnosed with ulcerative colitis when I was little, I remember how sick she was and it breaks my heart to know my kids see me sick. I had to try and explain to my toddler why Mommy had a heating pad on her tummy so much. The hug he gave me was the best feeling in the world. I guess what I'm trying to say is, I believe, they understand a lot more than I know. I hope you get to feeling so much better soon!
 
i understand exactly how you feel, i have a three and one year old, My three year old is brilliant, helps alot. She understands i think because she has to. She tells me youngest mummy is poorly today lets go and play and amuses her for me. I hate somedays nto being there as i work full time and want to spend as much time as posible with them.

Its hard but we just have to get on with it sometimes. I know its hard x
 
hello, im the same i have 3 girls, and they hate seeing me this way, and i feel tired all the time, that i dont do the things i want to with them, so some times i feel like a bad mother, its so hard.
 
dont feel like a bad mum, i am sire they understand more than u think and they will appreciate what time u do spend with them xx i am very grateful that my children are alive and healthy, they come before me in everything, even i fi am feeling itred which i do most the time i still do what i can with them x

as long as you love them and they are fed watered too then they will love us unconditionally xx

Just remember we are there no 1 and always will be xx
 
My mum was very ill with Crohn's when I was younger & although I used to worry about her a lot I think it helped make me more caring & also quite an independant & capable person.
I hated her being ill but we coped very well. We have an extended family who used to help out also.
I remember being sat on the sofa watching films & comedies with mum when she was ill & recovering from one of her surgeries.
The worst time we had was when she tried to ween herself of pred.
I discovered I had Crohn's last year but had been ill for some time. I was close to my mum before but now we have an even greater understanding.
I love her to bits & I know she did her best when my brother & I were growing up.
Luckily my children are 17 & 20 now but I do sympathise with all the mums with young children out there who are trying to keep going through illness. You are all my hero's.
 
I felt the exact same way as you,my children are grown now but I certainly remember those feelings.I was sick all the time and couldn't go on field trips or volunteer at school and I felt very guilty about it,it is normal to feel guilty but don't beat yourself up about it,there is really nothing you can do about it.
 
its hard to not beat yourself up about it tho, sometimes you just wanna cry for what their missing
 

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