Anyone out there who are new mothers with crohn's (need some support)

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 7/23/2008 8:35 AM (GMT -7)   
Hi, I'm so frustrated lately because I just want to curl up into a ball. My doctors never listen. I've been through about 5 G.I.s. They all were jerks. I feel so bad because I want to go ut for walks with my baby, but I never seem to get around to leaving the house. One being that My D is out of control and two when I do go on a walk I come home and just want to sleep because it just wears me out so bad. I feel so exhausted. I can sleep the night I went for a walk and wake up just drained. It will take up to 2 or 3 days to get that energy back up. My daughter is such a blessing because we weren't sure if we would be able to have children. When I got pregnant I flared to the extreme. I felt dizzy all the time and felt faint most of the time. I ended up going on medical leave for the last 3 months of the pregnancy. I'm still trying to recover from the birth. I'm lucky though I have a 4 month old who sleep up to 10 1/2 hrs a night. I was put on prednisone to get relief. Will never touch that drug ever again if it's last thing on earth I will not touch it. I was forced by a doctor to take it because he wanted me to get some relief, but when I started to reduce the dosage it became ineffective. I ended up 3 steps farther back than when I started it. I was also taking 6mp. It's still not working.
 
What I'm having most problems with is that I get really emotional and some times I just want to leave my baby crying in her crib, which so far haven't done yet. I get really angry really easy. I'm tempted to purchase a punching bag. :) I'm worried that I'm getting depressed. ?
Age:22/6"1'/138lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Warfarin, Prednisone :(, 6mp :( NOT WORKING
Problems:Fissure and Tags on rectum, blood clots, ChronicUTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s
Procedures: 3 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 7/23/2008 9:09 AM (GMT -7)   
I'm so sorry that you're going through this! I'm 26 and 12 weeks pregnant with my first, but so far I've been flairing like mad and I'm afraid there's no end in sight.

I don't have good luck with doctors either. They're so miserable!

Anyway, I'm gonna pop off some things that a GOOD GI would check for, but who knows if that means they did or not.

- IRON - whenever I get as tired as you're describing, an iron infusion can make all the difference in the WORLD! I get mine through an IV at the doc's/hospital. If I'm having bad D, I don't think the good stuff gets absorbed, so maybe that's why the IV iron helps so much... I dunno.

- WATER- It sounds stupid and obvious, but it has taken me 4 YEARS to understand why people are so pushy about staying hydrated. It really does impact EVERY facet of your physical existence. Are you getting enough water every day? 12 glasses is daunting, but it's SOOOOO worth the effort.

- SMOOTHIES - fruit smoothies with vitamin or protein powders in them have quite literally saved my life. All you need is a blender. It's a great way to turn healthy stuff into liquid form so that the fruit doesn't make your D worse. AND, you can make them with whatever you want. I usually use frozen yogurt (ice cream is a no-no for me), fruit juice, a banana, and frozen fruit like mangoes and what-not. I bought some protein powder recently too, which is actually really tasty and definitely helps my energy level because I'm getting good stuff in my body in a way that my body can actually absorb it.

I don't know if any of that will help, but it's the best I got. ((hugs))
I'll be thinking about ya.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 7/23/2008 9:16 AM (GMT -7)   
Please try to see a counselor. Even though you are by no means crazy, crohns and especially prednisone can make you feel that way. You may also be experiencing post-partum depression. A counselor can help teach you coping mechanisms to deal with your new emotions and anger. Also, see if you can get some help. Lots of colleges have volunteer programs. Someone interested in going into early childhood education would probably love to spend a few hours/week with your daughter. Then you can have some you time and take a nap or something.

If you want your daughter to get outside that doesn't mean you need to take a walk. Put a play pen outside and sit and read while she enjoys the breeze.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


kgirlie
Regular Member


Date Joined Jan 2008
Total Posts : 101
   Posted 7/23/2008 3:17 PM (GMT -7)   

Hi,

I am the mother of a three year old boy and my baby girl is almost 1. I can totally relate. Now that I have my two kids I can see a pattern with me. I get pretty sick while pregnant, have the baby, hormones crash and I am in a major flare on top of struggling with post pardom depression by the time my kids are four months old. I had the same feelings, but mine gradually got worse. I had absolutely no energy. I had two good babies that spent a lot of time in their cribs while I slept. I do have a great husband that helped as much as he could. I went to my crohn's support group and all my symptoms pointed to depression. I didn't agree at first, but made an appt with my primary care dr and told her I thought  was tired, but not depressed. Then she suggested I try lexapro and just see if it helped. With my son I was put on 20 mg of lexapro and within one week I noticed a significant difference. I could actually function again. I was able to work, I am a teacher, come home and play with my son. I still needed 8-10 hrs of sleep at night for a while but it really helped. With my daughter, the same thing. I went to my dr, it was a different one because I moved, told her my situation and she put me on lexapro again along with wellbutirn.

I am not advocating prescription use, but I would definately call my dr. I just recently started with a counselor and that has helped a lot too. I too will never ever take pred again. It did way more damage to me then good. I thought the medications would make me feel "high" or "really good", but what they did was make me feel normal. I was able to function, live my life and enjoy my baby. The best thing I ever did was become a mom and I wanted to make it so I could be the best mom ever. I still nap when they nap, but I also hold down a full time job and have my students to worry about too. I loved Fitzy's idea of putty the bouncy outside and sitting in the backyard. I did that a lot with my kids. I scoffed at people when they said exercise, but after the pred I gained 70 lbs and had to start exercising and when I started out it was only ten minutes and now I can do 30. I hope this helps, but you are NOT alone. It is the hardest ting to have crohn's and have a baby. I am amazed and grateful our bodies can do it. I would call your dr tomorrow and make an appt asap to talk with someone. Let them help you with some of your struggles (fatigue I mean). My babies were both born into a sick mom and I would feel so bad about sleeping, but I have found that it helps me be a better mom and wife.

I hope this helps. Let me know if you have nay questions or concerns I haven't answered. This is just my opinion, but I hope it helps. I have been through it twice and I would do it fifty more times if I could.

Take Care and lots of HUGS!!

Kim


Kgirlie
 
27 year old female dx with CD in 2001. Pentasa 4 g/day, Prednisone 30 mg/day, Lexapro 10 mg/day, Wellbutrin 150 mg/day, Remicade, topamax, nadalol, Maxalt 10 mg as needed. Mother of son, 3, and daughter, 10 months.  


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 7/23/2008 3:21 PM (GMT -7)   
My son is 2 1/2 and I have agree, sounds like you have some depression going on there. I went on Prednisone 2 months ago and when doc put me on it, the first thing I asked for was a script for Wellbutrin as well. Prednisone does evil things to me and makes me someone who I'm not.
So I just know when I go on it that I also need the other. Also when my crohns is flared I ask for the Wellbutrin too because it helps me not get so depressed about being sick and not feeling well.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin
No Surgeries
 


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 7/23/2008 7:00 PM (GMT -7)   
Sounds like depression. We've been there girl. It's nowhere fun. ((((HUGS))) Have you considered seeing your primary doc to discuss how you've been feeling. Depression is very common with chronic illness and not only are you dealing with that, but also with the fact that you have a new baby and your hormones are shifting back. This is a multi-layered situation and you are so wise to reach out for some kind of help. With all that you are dealing with it's no wonder that you are exhausted and feel like crying all of the time. Don't be too hard on yourself and don't expect too much of yourself. Your baby is still very small and she'll be just fine if you don't take her on a walk every day. When I had my first baby I got so sick there were days where she played in the pak-n-play and I just layed on the couch. It was so hard. So, I feel for you. I do. Please talk to your doc. Maybe there is something you can take - even temporarily - to help you through this transition. Keep us posted. We are here for you!
Stef

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 7/23/2008 8:20 PM (GMT -7)   
You need to get in to see your PCP. Many, many new Mom's get Post Partum Depression. My daughterinlaw went thru it but she got help and was put on meds for the depression. It made a big difference for her. Hugs, Susie


CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 7/25/2008 5:24 AM (GMT -7)   
Hi ChronicllyIll. I'm so sorry to hear what you're going through. I was dx'ed shortly after giving birth, so I know a bit about your post. If it were me and I could do it all over again, I would say:

#1--Go to your GI and have some labs done. Your disease is not being managed, therefore you need a new medication. I would ask for a biologic since you've tried everything else. You probably need B12 and iron, too.

#2--Ask for medication for your anxiety.

#3--Find a counselor or support group. Having an outlet to vent your frustrations can do wonders for how you feel physically. You can also get great tips on how to deal.

Being a new mom is overwhelming for healthy mothers. So give yourself a break. YOU ARE A GOOD MOTHER. You know how I can tell? You are concerned enough about your health and her wealfare to reach out as you have on this forum. Now all you have to do is reach out a little further and ask for help from your physicians.

Good luck. And keep us posted.

Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 7/28/2008 8:10 AM (GMT -7)   

Thank you all for your suggestions. I have recently been to see my doctor. He suggested B12, iron, folic acid, and a multi-vitamin. I also decided to take selenium, and vitamin C as well. Instead of the regular iron pills I have turned to a liquid iron. One of my doctors said it would be more easily absorbed. I have a little thing about nasty tasting things, but I am biting the bullet and taking it because I want to get better. In the past I have talked to a doctor about depression and she gave may a list of numbers of people to talk to. Haven't yet resorted to them yet. I have recently quit taking my 6mp. I feel more sain lately, but got crhonic diarhea. But it doesn't help that I have been binging on bread, an ultimate no-no. I am highly gluten intolerant. Its so hard not eating things with gluten. It's every where. I'm headed down south to Kelowna tomorrow and I am trying my hardest to be as healthy as I can be so I can have a good time.

I am so lucky that my baby is a very happy baby. She doesn't cry unless there is a reason. She is very self entertained. She is so big to. LOL At 4 months she's already 18 1/2 lbs and getting her first tooth. She is the best baby I could have asked for. She also sleeps 10 hrs a night. I can say I am blessed beyond belief.

Does anyone feel guilty about having to run to the can and leaving their babies crying? I sure do. I know there is nothing I can do about it but, thats just the way I am.

Patientspider, your ideas are exactly what I do as well. They are life saving to me anyways. For your pregnancy if your flaring really badly right now I would focus on what you are ingesting in your diet. I went off all drugs and ate whatever I wanted, because I wanted my baby to get the food she needed. Unfortunately now I am still suffering. It just makes things harder when we eat whatever we want, but supplements are a good thing while pregnant. I hope things go really well for you with your pregnancy and that your baby is a happy healthy baby when the time comes. :) Mine after all I went through came out at 7 lbs 13ozs. We were so worried that she would be an under weight baby, but she was right on track. With my crohn's I only gained 11 lbs and she was pretty much all of it. :) Didn't take long to lose it LOL. Lots of my friends are like "Grrrr it's not fair that your back to your pre baby body." The only thing I have to say to them is, it would be better if I could lose it like a normal person. Not so unhealthly.  

Thanks to all you moms for your suggestions, thoughts and hugs. Very appreciated and I will keep you posted. I'm thinking of starting a post for moms to talk. So look out for me :) TTYL
Age:22/6"1'/138lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Warfarin, Prednisone :(, 6mp :( NOT WORKING
Problems:Fissure and Tags on rectum, blood clots, ChronicUTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s
Procedures: 3 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


Bible
Regular Member


Date Joined Jul 2007
Total Posts : 188
   Posted 7/28/2008 8:54 AM (GMT -7)   
I know it sounds goofy, but when mine were little, I kept a highchair in the bathroom just so my son would have somewhere to play while I was on the can. Also, I have breastfed while sitting on the can. If you don't have room in the bathroom for a highchair, maybe put one in the doorway or use something else that you can set the baby in while you sit on the can. Such as infant car seat. Good Luck- I remember those days and they were so challenging. Mine are now 7 and 8 (10 months apart)

Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 7/28/2008 1:13 PM (GMT -7)   
Bible - I was just going to say that!!!! I keep a little bouncy chair or baby swing by the doorway of every bathroom when I have an infant. That way I can plop baby into the seat and there is no crying while I spend the next 15 minutes in the 'loo!!! I've also breastfed while sitting on the can. Hey - ya gotta do, what ya gotta do!

Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 8/28/2008 1:55 PM (GMT -7)   

Thanks guys thats a great idea. I would never have thought of something like that. Claire does wuite well when I lay her on the floor and entertain her while sitting on the can.


Age:22/6"1'/138lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Warfarin, Prednisone :(, 6mp :( NOT WORKING
Problems:Fissure and Tags on rectum, blood clots, ChronicUTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s
Procedures: 3 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/28/2008 3:34 PM (GMT -7)   
That's great! I'm glad you found a solution. My oldest one spent quite a bit of time laying on the bath mat too! :)

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 8/28/2008 4:49 PM (GMT -7)   
Someone mentioned iron, and I'd also like to mention B12 levels. Ask your doc to check them. It doesn't hurt to take the supplements anyway. Just keep out of reach of baby ;-)
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 1:24 PM (GMT -7)
There are a total of 2,732,658 posts in 301,041 threads.
View Active Threads


Who's Online
This forum has 151200 registered members. Please welcome our newest member, MartiG.
288 Guest(s), 12 Registered Member(s) are currently online.  Details
George_, scifigal2k, BnotAfraid, Lymepilot, Teamchris, MartiG, Mustard Seed, Randy Eichner, Broncofan18, Myself 09, Oranged, Lisa-Dionne


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer