Don't know what to do

sickmom and aquafly79, It is so terrible the things we go through to take care of our kids. I can't count how many times I've given my 2nd daughter her bottle while I was on the toilet :( My 1st daughter spent so many days with me in the bathroom in her bouncy seat. We have a very small downstairs bathroom, so sometimes it's the 3 of us AND our dog! I just have to laugh sometimes and it's so good to know I'm not alone, so thank God for this forum. I hate that this is something we all have in common though.

I started the Prednisone Wednesday morning and the bleeding has stopped this morning! I also have started my Rowasa enemas up again and I'm also doing my Canasa suppository on top of that b/c I know a lot of my inflammation is right in my rectum and I don't feel like the enema covers it enough. I was able to keep it in all night with no pain at all! The Ativan has helped me sleep amazing the past 2 nights!

I'm on day 5 of the SCD, so I'm able to start adding new things into my diet...excited about that, but am definitely going to take it slowly! I've only been doing the homemade chicken soup, beef patties, fish, gelatin, and grape juice. Just got my yogurt maker in the mail yesterday so I plan on making that today or tomorrow. Excited to start making smoothies for breakfast and that homemade cheesecake :) Also found a recipe for cooked apples with cinnamon and honey...yummy! I really feel like if I stick to this diet and get into remission with the Prednisone, I'll have a better chance of have an easier time tapering down and hopefully stay in remission for a looooooooooooooooooooooooooong time.

Another huge factor is that we're done having kids so I don't have to worry about that 1st trimester flare again! I am so happy God blessed us with 2 beautiful girls, but now it's time for me to get my health under control so I can enjoy life again.

I hope you all can do the same...so nice knowing there are other people who understand. I can't stand when I hear other Mom's complaining about everyday crap (no pun intended lol) when I'm dealing with this! Like you said, Aquafly, I know everyoone has their own issues, we all complain about the same stuff they do, but at least they don't spend their days in the bathroom!

I thought I was the only person who regularly went to the bathroom with two kids and a dog!

Me too! Minus the dog though!

Mamabee,

I think I had the same symptoms you are describing as prednisone got me closer to 'normal'. For me, I think the urgency started to turn into cramping a little bit and eventually went away or would stop before I needed to go to the bathroom. Does the cramping seem to preceed you having a BM? I guess that may be urgency, but I can't tell the difference anymore myself.

I am glad the pred is helping, hopefully you don't have a hard time getting off it, I started tapering and my body just won't get below 20mg, tried two times to taper below that with no luck and now I am up to 30mg again..sigh.

I have cramping. My doc said it's just the inflammation. Mine feel mire like menstrual cramps.

I had the cramping, too, but almost thought of that as a good thing...a little bit of warning before a bm.

Bubwee,

Welcome to the forum.

Sorry about your diagnosis and a flare.

Lots of folks have had success with SCD - specific carbohydrate diet. At least I would suggest to be dairy free, wheat and gluten free.

You could always do a food journal to see what correlations may exist.

You may also want to add some other things as well:

1) LDN - low dose naltrexone

2) L-Glutamine for colonic repair

3) slippery elm powder

 

Started tapering down to 30mg as of today! So far no side effects, but positive ones...less bathroom visits (about 2-3 a day). The urgency is subsiding, but still there. I mostly see some blood in my 1st BM of the day, but I think that has to do with the enema and suppository. After the 1st 2 BM's, the enema is out and then my stool is more formed with no blood!

I am still on the SCD and loving it! All of my meals include protein and veggies. Haven't tried any fruit yet. I have definitely lost weight from being on this diet b/c I went from eating carbs and sugar all day, everyday, to NONE of it! I don't know what to contribute it to, the diet, the prednisone, or what, but I'm feeling really well!!

I'm a little nervous starting my tapering today, but I have to do it at some point. I really don't want to be on Prednisone for longer than I have to be. I haven't gotten my bloodwork back yet so I don't know how anemic I am etc.

Thank you so much for checking in with me mom2girls! Hope you're having success with your treatments. Have you decided to try LDN or the antibiotics? My dr wants me to pick up on the Imuran before I'm done tapering the Prednisone, but I don't know how comfortable I am with it. I really want to try LDN. I've found a dr that prescribes it, but I just have to make the appt!

Hope you're doing well and welcome Bubwee! I would HIGHLY recommend altering your diet if you can. Made a huge difference for me even before I started the Prednisone.

mamabee & mom2girls,

Glad to see you are both doing better.

Good to hear sickmom! I'm also tapering at 25 mg. My mother-in-law took my 3 year old to stay with her until Sunday! So, it's just me and my 8 month old (who is so easy going). I'm hoping this "time-off" will help me de-stress! :))

Yes, I am blessed with family willing to step in and help! My parents and my husbands parents live 2 hours away so they can't help often, but it's nice to get a break every once in a while.

I am taking 2 packets of the VSL DS a day (morning and night). My slippery elm bark should be here tomorrow.

I'm so glad the post encouraged you to get back into exercising. I am big on that! I probably work out 4-5 times a week. I actually feel better on the days I exercise. Maybe you can do some strength training to start. That way you will gain muscle and not lose too much weight.

Tell me exactly how you are dieting. I have the book, Breaking the Vicious Cycle, but it was hard for me to do. What exactly are you eating and drinking?

Well, just called GI and I still haven't heard back. Tapered down to 30mg as of yesterday and woke up this morning with bloody diarrhea 4 x's so far :( Took Lomotil b/c the day ahead of me is just ridiculous.

On top of everything else that has happened, we just had an intervention 2 nights ago for my husband due to his Alcoholism. It's not to the point where he's violent or abusive, but if I don't stop it before it gets bad, it will. I have 2 children to protect and don't want them growing up in this environment. I've decided to change the locks today until he realizes what he's doing to himself and to everyone else around him.

Please pray for us. Not sure if it's b/c of the Pred taper or the stress from everything, but I don't like these new/old symptoms of UC creeping up so quickly.