I need some serious help.....

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weedlewub
Regular Member


Date Joined Jan 2008
Total Posts : 30
   Posted 3/5/2008 10:59 AM (GMT -6)   
I am in the middle of the worst flare I have ever had.  I have been off my meds since August, when I gave birth to my son.  I am adamant about not taking the drugs while nursing, but am now worried that I made the wrong decision.  In January I began holistic treatments.  I am being patient with the treatments, as I know that it will take a while to find the right mix of suppliments and diet for me.  I recently found out I have a soy allergy and stopped eating anything with soy (which is basically all processed foods).  I also do not eat red meat or poultry, which basiocally leaves me with the following things to eat - fish, eggs, yogurt, fruit and vegetables.  Most dairy, wheat, and sugar causes an increase in symptoms.  So, since January I have lost close to 10 pounds.  On top of this, I am nursing a 6 month old infant, who still wakes twice during the night to nurse.  I am living on about 4 hors of sleep a night, because once I wake to nurse the diarrhea starts.  Two days ago I stopped counting at 12 bouts of diarrhea.  The bowl is full of blood.  I have absolutely no energy.  I know I am dehydrated.  My legs keep feeling like they are going to give out on me.  I've never had diarrhea before with a flare - just blood and mucous.  Today I threw up for the first time (the nausea started last week).  My fear is that if I go to the hospital they are going to make me stop nursing and I will have to go on my meds again.  I really don't want to take prednisone.  But, I worry about dehydration and my blood presurre and anemia and everything else that is out of whack right now.  I just don't know what to do.  I have never had a flare this bad, and don't know at what point I should be really concerned and go to the doc.  I am worried about me and my son.  I guess I just need to vent.  I feel like I can't talk to my husband or family about it, because they worry so much.
 
Sorry to ramble.
Diagnosed with UC in Jan 2006
took Asacol and  2 pred tapers
pregnant in Jan 2007 - went off meds
flare during pregnancy - went back on Asacol and pred taper
stopped drugs for nursing and now taking a holistic approach
 
Currently taking congaplex, zymex, multizyme, l-glutamine, calsol, protefood, colechol II and homeopathic "intestinal distress" drops.


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 3/5/2008 11:19 AM (GMT -6)   

Hi there....

From what you've written I think you should be concerned enough to contact a doctor very soon.  It's commendable that you don't want to be on any drugs for the sake of your baby, but if you're sacrificing your own health by doing so, then that may be worse for everyone in the long-term.  I tried the holisitic approach for a while last year and ended up making things so much worse.  I became severely anaemic and ended up in hospital for blood transfusions.

There are some members on the forum who have been taking medecines whilst nursing so hopefully you'll hear back from them.  But in my opinion, I would still recommend speaking to a doctor - at least you'll get to know where things stand and have a chance to rationalize your approach with your doctor; and maybe even find a course of treatment that suits yours and the baby's requirements.


Rio, 31 yr old male - diagnosed with UC in 07/2006.
 
Alternative therapies for several months (SCD, ayurvedic treatment, VSL#3): didn't work and became anaemic. Canasa, 2 daily: remission for a month then flared-up.
07/07-11/07: 4800mg Asacol (6 x 400mg, twice a day) & Aloe Elite.
Completed first (6 week) tapered course of Pred in 10/07, flaring up since coming off it.
11/07: Switched from Asacol to 12 x 750mg Colazal (3 weeks on it and symptoms got worse)
12/07: Asacol 4800 mg, Started Azathioprene 175mg, Prednisone taper from 60mg - Now on alternate days of 20mg and 10mg; 2/08: added 1 Pentasa x 1mg.


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/5/2008 11:53 AM (GMT -6)   
my personal theory........

we can have periods of remission w/out drugs but we need the drugs when flaring, and it may be best to stay on something when in remission so as to cut down flares.

not to contradict what I say above, my thinking is changing from taking all these magic pills that have given me new diseases, I think for myself I want to find a good combo of pills and natural.

also, if you are not well that is also going to affect your child in one way or another, you need to see your Doc, whether you choose to take the advice or not, you need to have that info to make the best decision for you. I think the Asacol is supposed to be pretty safe.
Beth, 32
Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


Squattie
Veteran Member


Date Joined Jul 2005
Total Posts : 669
   Posted 3/5/2008 1:11 PM (GMT -6)   
Hiya Weedle,

Check the labels on you Standard Process supplements. Most of them have soy lecithin. I'm intolerant to soy and soy is soy when you're intolerant. I found I had to give up most of my Standard Process stuff. And congaplex really kills me....it's the vitamin c thingy.

Gastrex works well for me. I empty about 3 capsules in a glass of warm water and let it sit for 15 minutes. Then I drink it. It turns nice and slimey (okra powder) and soothes the gut and heals ulcers. I take it several times a day. Seriously, check your labels and inquire about them to your practitioner. Standard Process is great, but for some gut compromised folks, it doesn't work. Hope you feel better soon.
.....Squattie


weedlewub
Regular Member


Date Joined Jan 2008
Total Posts : 30
   Posted 3/5/2008 1:49 PM (GMT -6)   
Squattie - I asked him about the Congaplex - it's the only one of my supliment's with soy lecithin in it. He said it is in such a miniscule amount that it shouldn't irritate anything. Sounds like BS to me. Like you said, soy is soy.

I am going to the holistic doc tomorrow and he is going to change things around. I think Gastrex is one of them that he talked about.
Diagnosed with UC in Jan 2006
took Asacol and  2 pred tapers
pregnant in Jan 2007 - went off meds
flare during pregnancy - went back on Asacol and pred taper
stopped drugs for nursing and now taking a holistic approach
 
Currently taking congaplex, zymex, multizyme, l-glutamine, calsol, protefood, colechol II and homeopathic "intestinal distress" drops.


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 3/5/2008 3:11 PM (GMT -6)   
I was in your shoes 7 years ago. I gave up and took the Prednisone and quit nursing when my baby was 6 months old. It was really disappointing at the time but now looking back I don't think my body could handle it all anymore. One thing you could try if you really wanted to is giving him formula before he goes to sleep and pump the milk so you won't get too engorged at night, it might help him sleep longer. Or start giving him a little cereal before bed if you haven't tried those things already. Giving him some formula won't make you a failure. I know I felt that way and I was very emotional about it. With my 2nd baby, I took Asacol and Rowasa enemas while nursing. You have to take care of yourself in order to be well enough to take care of your baby. I hope you feel better soon.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/6/2008 12:57 AM (GMT -6)   
I have no kids so I don't know if this is accurate or not but don't the nutrients in your breast milk come from YOUR nutrients?? If you can't get enough nutrients to be healthy it would probably be healthier for your baby to be getting formula since it at least has all of the essential vitamens, etc. I know there are benefits to breast feeding and your baby reaped those benefits for 6 months. But now it would be healthier for your baby to have a happy healthy mom and all the vitamens formula can provide.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 3/7/2008 7:57 PM (GMT -6)   
weedlewub,

I'm concerned about your diet because it doesn't sound healthy, you need more than fish, eggs, yogurt, fruit and vegetables for your body to be properly nourished. I am also sensitive to sugar and milk, but I can, and do eat lots of chicken and on occasion red meat; why not at least experiment by eating some chicken and see how you feel? Doctors, even holistic doctors are not right about everything.

Living on about 4 hours of sleep is not enough for your body to heal itself and having 12 bouts of diarrhea will drain you of nutrients and water, which can increase fatigue and cause low blood pressure. If this is how you feel after being on this program since January 1st, then I think it's safe to say it's not working; why not at least eat meats for now and see how you feel?

ps.
Fruits maybe increasing your problems because bananas, oranges and apples contain sugar and if you consume too many of them, they may increase your symptoms...especially bananas. Finally, I am a big believer in using diet to reduce UC symptoms, but I believe there is a right way and a wrong way...so please eat some meat and just remember not to use gravy that contains sugar; don't use salad dressing because of the vineagar, etc.

NBT


Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.

Post Edited (NuffinButtTrouble) : 3/7/2008 6:02:02 PM (GMT-7)


hekela
Veteran Member


Date Joined Nov 2006
Total Posts : 731
   Posted 3/7/2008 9:10 PM (GMT -6)   
hello!!!
so so sorry to hear that you are suffering and taking care of your sweet baby all at the same time.
i was exactly where you are 2 years ago with my first flare. i was terribly ill and nursing and trying to find out what was wrong and then dealing with denial, depression, and finally giving into the meds.

BUT YOU CAN KEEP NURSING!!!
i started asacol when my son was 6 months (i think...) and then a month later started 40mg of pred. finally that got the bleeding to stop. my OB, my son's pediatrician, and my GI all reassured me that asacol and pred were both safe while nursing. i stayed on 40mg for a few months but you'll just have to see how you react. and i tapered with no problems.
i nursed my son until he was over 2 and he recently quit nursing on his own because i'm pregnant! :)

get yourself well!! i know the meds are horrible to think about sometimes, but i'm just thankful that i'm well and my son is too.

have you tried nursing (at night) while lying down? i found that this helped me finish nursing, he'd get back to sleep, and then i could get up and get to the toilet. but if i sat up i'd have to take him in there with me or leave him in bed (crying) with my hubby until i could get back to him.

only you know what is the best food for you. i've found that the best thing has been eliminating processed foods (and i can't do soy or eggs). i got a bread machine and that is super easy to make your own bread. and then i'm careful with dairy. the extreme diets (scd or antifungal) have never worked for me.

oh, and you could have some bloodwork done if you are worried about anemia or malabsorption. i was in the middle of the worst of it, bleeding, going 12 times a day, having accidents... and my doctor did some blood work to make sure it wasn't a thyroid problem and he was amazed that the bloodwork belonged to someone as sick as me. so you just never know how efficient you body is with what little it must be getting.

hang in there and i hope you are feeling well very soon!!
aloha
28, happily married, stay at home mom to 2 year old son. due to have baby #2 9/17/08
UC (probably pancolitis, but no c-scope yet), diagnosed June 2006, started having major symptoms sometime in January 2006, about 3 months after childbirth. 2nd flare (minor) may 2007 after taking caprylic acid for 2 weeks.

-Prednisone 8/28/06-2/28/07. and again may '07, 8 week course.
-Asacol, probiotics, ground psyllium husk, fish oil, prenatal

may you live all the days of your life.


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 3/7/2008 9:32 PM (GMT -6)   
NuffinButtTrouble said...
I'm concerned about your diet because it doesn't sound healthy, you need more than fish, eggs, yogurt, fruit and vegetables for your body to be properly nourished. I am also sensitive to sugar and milk, but I can, and do eat lots of chicken and on occasion red meat; why not at least experiment by eating some chicken and see how you feel?
You don't need to eat meat to be healthy/properly nourished. I think eating fish, eggs, yogurt, fruit and veggies sounds really healthy, depending on the variety and if you're getting enough calories. Can you add in some grains? Rice is usually safe for an upset digestive tract, if you can't tolerate wheat. And many of us are okay with bananas (though not all). They are actually one of the foods often recommended for people with upset stomachs. Are you taking a multivitamin? I do agree with NBT that you're not getting enough sleep to allow your body to heal (which I'm sure you already know). Would you reconsider going back on the Asacol or at least talk to your doctor about it? I believe it is considered safe to nurse while on it. Good luck. I hope you feel better soon!
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 3/7/2008 10:11 PM (GMT -6)   
weedlewub,

I forgot to say that if you want to know how I managed to get off meds and stay off meds for over a year, let me know and I will share what worked for me. Through diet I was able to achieve normal bms and increase my energy levels and there are others here who have accomplished the same thing...it's not a cure, but believe me, it's not far from it ...if you stick to it.

I don't know what shape your colon is in, but mine had ulcers all over it...then after being on a diet for a number of months my colon completly healed itself and my GI couldn't believe it.

So if it can work for me, it can possibly work for you.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.

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