Don't know what to do

I am feeling so lost right now.  For the last month or so, my flare-up has gotten worse.  My 18 yr old cousin was killed in a car accident July 1st and ever since then I've gone downhill.  I was doing Rowasa enemas and able to keep them in all night and sometimes not have a bowel movement until the next afternoon.  When she died, we had to go to NC for a week and my ENTIRE family (like 20-30 of us) stayed at their house and I was sleeping on the floor in a hallway...not a great place to be doing enemas, so I slipped a lot that week.

Then my Uncle had a subarachnoid hemorrhage 2 weeks ago and has been in the hospital ever since...still not able to get his pain managed well enough to go home.  Needless to say, I've been stressed.  On top of everything, I'm a stay at home Mom to 2 girls, 3 yrs old and 9 months.  My husband doesn't get home until 7 most nights and family is preoccupied caring for my cousins while my Uncle's still in the hospital.  I have been taking it 1 hour at a time, but feel like I'm at my wit's end.

Friday I had a GI appt and he wants me on Prednisone and then once I taper off that, onto Azathioprine.  When I heard that I was so scared and was planning on taking it and following his plan.  Then I came home, spoke with my husband, looked at all our options and the side effects of Prednisone.  I decided to start the SCD diet and go from there.  It's now day 3 on the diet and I want to continue, but still feel like I need something to help kick me into remission soon.  I am definitely anemic (getting bloodwork this week) and it's already exhausting being a Mom, so this has been tough.  I can't leave the house b/c I have no energy...thank God my girls are happy anyway.  I am feeling depressed.  With everything that has happened to my family and then my health being a mess...it's been tough.

 

Should I follow my doctor's orders?  My other GI (I like to have 2 for other opinions) said Prednisone would be our last resort and she wants to do 6mp.  Before I started the diet I was having bloody diarrhea and urgency 10-15 times a day.  Now I go about 6 and the urgency is lessening.  Still bloody diarrhea.

 

I am open to all suggestions and experiences so please bring them on!

I am really hesitant about all the side effects of Prednisone and the fact that it might be a quick fix, but who knows how long I'll be on it?

How did the diet work for you? What are your side effects from Prednisone?

Thanks for your help!

mom2girls: Can't believe how much we have in common...wish it was something positive though! I feel a little better knowing you've done Prednisone and haven't had noticeable side effects. I'm afraid, however, to take it and then get future flares and get no relief from it if I need it.

It is so hard keeping things normal for the girls. We can't get out of the house, can't go on playdates, etc. How do you do it?

My doctor did prescribe Ativan for my anxiety and I think I might start taking it to lessen my stress. Before I got pregnant with our 2nd daughter, I was on Prozac and went into remission after 3 months (the Prozac caused diarrhea for me). I almost went off it, but my doctor said to give it another week and I was so glad I did b/c one day I was "normal" again! I don't want to go through that again, so I think the Ativan will have to do for now. He also gave me Lomotil to control my urgency when I want to get out of the house b/c Imodium wasn't working anymore. I haven't tried it yet, but may tomorrow. I am getting cabin fever and want my life back! Thinking that the SCD will definitely help, but I really do need something to jumpstart my remission...God willing.

Thank you for your help! I wish you the best of luck with the 6mp...let me know how you feel on it.

Have you thought about trying LDN?

So mamabee - have you ever taken oral steroids before? Some of us don't have ANY nasty side effects. In fact, I love love being on pred. I get euphoria and lots of energy, and when you're a mom of young children that is A Good Thing. Of course, prednisone is not a drug to be taken because it's fun, and you should absolutely not take it more than a few months (3? 6? Mom2panda's 14 month course sounds scary). If you and your DR agree to a plan I strongly recommend you do the steroids to get you into remission, and then move on from there, with diet, other meds, both, whatever seems like a good plan for you and your family.

Getting out of a flare is important. After that you can fuss with maintenance meds and diet. I'm glad your dietary changes have given you some relief - also maybe due to the reduction in the horrible stress of your cousin's death and uncle's illness. So sorry to hear about that. {{{{HUGS}}}

I agree with kazbern!

Mom2girls you have brought tears to my eyes and I don't even know you! I am a Christian so I pray constantly, but need to let go and let God. Thank you for sharing your devotional. I read my Jesus Calling every night and it always brings me peace.

Totally am with you when backing out of the driveway! Awful feeling. Haven't left them in the car, but in the last 2 weeks I've had to go in my daughter's potty seat IN the car :( Awful for them to watch, but I had no choice.

Starting pred tomorrow...started Ativan tonight and trying lomotil tomorrow to get out of this house!

Thank you for all of your help and kind words. God wanted us to connect tonight and I'm so thankful he did.

No more pregnancies for me after this roller coaster, although God may be laughing at my "plans." lol

I'm sorry about your loss. Stress can easily turn up the heat on GI issues, please do what you can to try and relax. Is your Uncle going to be ok?

mamabee,

I'm very sorry to hear about your cousin and uncle. What a horrible thing for your family to go through.

I feel like I could have written your post a few months ago. I, too, am a stay-at-home mom with a three year old and a nine month old. My husband also works long hours. It is hard in the best of times, but I have been in a flare for the past six months. I am now on my second course of prednisone and taking Imuran along with it. I was totally against taking the pred, but felt I needed to do it to be the mom that I wanted/needed to be for my kids. I had horrible side effects the first time: insomnia, mood swings, weight gain, etc. This time I am taking my all of my dose in the morning and that seems to be helping with the insomnia and mood swings at least. I do have more energy in the day, and that is a good thing. I almost feel like I am back to normal, but my gut keeps giving me signs that it still has a long way to go before I am really healed from all the inflammation. I tried the SCD, too, but was so sick I couldn't eat much of anything. I wasn't seeing results, so I gave it up. It sounds like you may be having better luck with it.

It does sound like you need something to help you quick. The pred should do that. Hopefully, you will be able to do a short course and taper off without problems. Of course, I was just reading in a book called IBD Self-Management, that you need to have an exit strategy when going on pred. I didn't the first time, and I wish I had thought more about this. Are you okay with starting azathioprine if you can't get off the pred without reflaring?

I actually had a prescription for LDN that I had dropped off at a compounding pharmacy. I had a colonoscopy the next day that showed severe inflammation. My doctor was about to admit me to the hospital, and I thought I was too sick to wait and see if the LDN worked. I do plan on trying it in the future, but I hope to catch things earlier. It took a long time for me to do all the research and find a doc to prescribe it. If you can get it right away, it might not be a bad option, especially if you are able to manage symptoms in the short term with diet, lomotil, and ativan.

I hope you are feeling better soon. I know these are not easy decisions. Keep us posted on your progress.

mamabee,

So sorry about your loss, and your uncle being in the hospital. That is some major stress, on top of everything else you're dealing with!

It's good you can vent here and I  think that helps too. It doesn't change your situation or stress level, but knowing there are people out there who KNOW what you are going through and emphatize helps alot. We're here for you .

It sounds to me like the SCD is working, but you probably need to give it more time. It can take up to a week for all the built up crap (no pun intended) to get out of your system.

How long have you been on SCD?

Also, are you doing any VLS#3 probiotics?

I would definitely suggest you give LDN a try before trying prednisone or 6mp.

What do you think?

I just wanted to say I'm so sorry for the loss of your cousin. It's horrible to hear of a young person losing their life. I hope your uncle gets better soon as well.

Stress = evil for us. I have had many stressful situations as well that sometimes I just don't know up from down at times. One such incident happened a few years ago. My gma was living with us (who had Alzheimer's and bladder cancer), she was put in the hospital, came home, we had a house fire, a few days later she had to go back into the hospital and on our way home from seeing her, my kids called and told me my dog was bleeding all over the carpet from a lacerated paw. I lost it and spiraled into a HUGE flare.

As hard as it may seem, we just have to take one day at a time and try not to stress. We have to make tough decisions regarding our health and that even means taking some meds that we don't want to. Perhaps you can also try using a suppository during the day? Do the enema at night - you can do it in the bathroom and quickly get to bed (to avoid the inconvenience of the floor), do a suppository in the morning?

Red_34: Stress is evil and has always been an issue of mine. Anxiety has been with me since I started kindergarten. I would vomit or pass out bc of it. 9 yrs old is when my IBS started. Got worse in high school and college. Once I was diagnosed when I got pregnant I always wondered if my anxiety played a big role in it.

I do the enema in bed and I'm able to keep it in all night. Sometimes I wonder if I could do the suppository as well. I think I could do it, but want to talk to my dr about it. Not sure if I could hold it in during the day though. Last night was my first enema I've done in a while and the pain in my rectum is unbelievable, which means the inflammation must be insane right there.

Thanks for your support:)

Aquafly79: I was thinking the same thing about needing a board for moms dealing with this!

I started the pred this morning and I'm praying I don't have a hard time tapering, but one day at a time right? Lol

I know I have to stick to this diet bc I'm a terrible eater. Bread and sweets are awful and make me feel awful. They give me energy and then I crash. Then I get bloated, gassy, and end up in the bathroom. Really hard when you're an Italian!

Hopefully, the mess in combination with the diet will allow me taper more easily.

Thanks for your help!

mamabee said...
BBC: thanks...we're praying everyday for my uncle. Don't really know why it all happened so that's the scary part. Right now the drs are saying that the headaches can last for weeks, months, or a year...awful. They're like migraine headaches though. He has an 11 yr old and 9 yr old. My mom has been taking care of them which is why I've been here alone everyday, but today my mom can come to help thank God and tomorrow my friend's coming for a couple days.

Sick mom: so sorry to hear you ended up hospitalized. That is my fear and I want to do everything I can not to. If I have to deal with side effects at this point then I do...better than how I'm living now. I hope you can reach full remission very soon! Thanks for

Thank you all for your support. No one understands what we're going through unless they're us. So hard to get that much needed support when you don't look

You're most welcome. Nerve damage of the spine/brain is a terrible condition, I know first hand as a simple epidural at l3/l4 got depomedrol (cortisone with preservatives) in my spinal fluid which caused nerve damage/arachnoiditis. I will pray for you both.

sickmom, totally had nights like that too. I remember once getting up in the middle of the night to nurse the baby and then running with her to the bathroom and hitting her head on the door I had to go so bad. I couldn't even stop to see if she was okay, and I felt terrible. Is there anyone here who doesn't get postpartum flares? They are the worst.

I get crabby when I am sick, at a park or playdate with my kids and hear other moms complaining about how hard things are..I just think, you have NO IDEA what hard is. I know, I know, we all have our issues, but having a chronic health issue just makes everything else in life more challenging at times. That being said, I SO appreciate when I am well as recently I have had enough sick times to always remember how much worse things can be.

Cheers to good health and happy kids(and moms)!