I'm a complicated case...

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Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 6/25/2008 6:39 PM (GMT -7)   
Today another specialist (in my 10+ yrs of CD) has basically told me I have a complicated case of CD and health problems.
 
I'm 13 weeks pregnant with CD, partial obstructions, mild heart problem, bleeding from uterus and other pregnancy complications.
 
I can't go on remicade or humira because it can cause fatal heart failure in anyone with a heart problem. So my only option is to hope and pray to God that my CD will go into remission and the obstructions will go away completely OR ELSE I'll need surgery while pregnant which can cause a spontaneous abortion.
 
I'm in tears.
 
I don't know why this disease never goes into remission for me.
 
I feel somewhat better knowing that I'm under care of some of the top GI's in Canada and if I have to have surgery, it will be performed by a surgeon who specializes in CD. But still... I just want to have a normal pregnancy and a healthy body.
 
This new GI is hoping an ultra sound will reveal how much scar tissue/inflammation is causing the obstructions and we may try LDN.
 
Prayers needed.  

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 6/25/2008 6:41 PM (GMT -7)   
You have my prayers, and all the positive thoughts I can send you! (((((hugs)))))
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/25/2008 7:56 PM (GMT -7)   
Ooooooooooh Roni, I am so sorry , what a mess, and the happiest times are having a baby.  I have only been in remission 6 years out of 30, and only one child, I was lucky (or to my advantage) that my worst of crohns wasnt unit my daughter was 4.  All I can say is really watch your diet, becareful what you eat. I too am in Canada, Ontario and may be headed for a 3rd surgery, but so far Humira and Prednisone is keeping it at a minimal pain.  My heart goes out to you and your little one to come, my prayers are being sent to you 10 folds!  Let us know how you make  out!  We are here to help if we can. good luck. xxx

Tough times don't last long, tough people do!


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 6/25/2008 8:14 PM (GMT -7)   
*Hugs* You're pretty strong having to go through all of this... I hope everything turns out okay. Keep your spirits up.
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 6/25/2008 8:28 PM (GMT -7)   
Roni, my thoughts and prayers go out to you. I hope that things improve, so you can enjoy your pregnancy....

God Bless.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


Betagirl
Veteran Member


Date Joined Jan 2003
Total Posts : 1928
   Posted 6/26/2008 5:11 AM (GMT -7)   
Wow Roni, I'm sorry. I'll be thinking of you...
"Only the meek get pinched...the bold survive."


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 6/26/2008 9:50 AM (GMT -7)   
Roni,

I will definitely keep you in prayer! Please keep us posted and try to stay positive.

-Emma
turboemma.blogspot.com/


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/26/2008 2:36 PM (GMT -7)   
Thinking of you....
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 6/26/2008 5:59 PM (GMT -7)   
Prayers to you both...remember God is carrying you through this even if you can't envision what He has in store for you. Your life and your unborn child's has purpose in a Master's plan. Know that He loves you and we do too!
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Glucosamine, Multi-Vitamin, Ultracet Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, peri-menopausal.


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/26/2008 6:53 PM (GMT -7)   
You will be in my prayers!
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS too
 
Meds I have tried:  Just about everything 
Meds currently on:  Prednisone 25mg tapering
                           Methotrexate injection 12wks
                           Folic Acid
                           Wellbutrin
No Surgeries
 


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 6/27/2008 2:51 PM (GMT -7)   

Thanks for all the support.

If I don't end up having surgery while pregnant (I hope not!), I may decide to have it after the baby is born anyway to clean up the stricture and the bit of CD that's giving me problems and then I'll look into the hookworm or LDN or something else that may be available.

I wish I was healthy. I beginning to think the worse part of CD is the obstructions because I can't even vaccuum my own house without obstructing. Now that I'm high risk pregnant, I'm even more restricted physically.

 


kgirlie
Regular Member


Date Joined Jan 2008
Total Posts : 101
   Posted 6/27/2008 3:56 PM (GMT -7)   

Hugs to you Roni! I struggled with my last pregnancy and was so happy to have my baby girl. I am thinking of you. My prayers are with you.

Kgirlie


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.  


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 6/29/2008 6:40 AM (GMT -7)   
Hi Roni hang in there and if cleaning and stuff bothers you find someone else to do it if you have to. Maybe keep on low roughage diet, easy to chew easy to digest. How long into your preg. have you had the obs. ? Worse comes to worse maybe they can put you in the hos. to monitor you threw all this. Keep strong things will work out. Hope you get some comfort and good news when they check you for the scarring. Keep in touch as we will be thinking of you. lol gail

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 6/29/2008 6:48 AM (GMT -7)   
Roni just wanted to say make sure your not dehydrated as it is hard on the heart so get your fluids IV or whatever you need. lol gail

Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 6/29/2008 10:17 AM (GMT -7)   
Roni, Oh How I feel for you! I was bedridden for my first pregnancy because of toxemia,my blood pressure went through the roof the minute I moved, but my baby girl was just fine... 6 lbs 13 ozs. and just healthy as can be... they had told me she would only weigh about 2 pds...but boy did she prove them wrong, and she was a month early too.!
My second pregnancy , 5 months after the birth of my first one.... was extremely difficult too. I flared terribly, refused to take any meds.... my weight was a big issue, because no sooner would I gain, that I would lose it again. I had to be bedridden for that one too, as the minute I did anything, the cramping and cold sweats, passing out etc... would start. It was very difficult to be bedridden... which turns out I couldn't do anyway because I had an infant to care for. So I would rest when I could. My family was very supportive and helped out as much as possible. My beautiful daughter was born by C-section , 2 weeks early and weighed a huge 8 lbs. I was so proud of her. My CD got much worse after I had her but then I was clear to start taking meds again.... It was so rough.... but it was so worth it.
Hang it there sweetie.! I'm sending you all my positive thoughts and prayers.
Ps. I prayed a lot during both my pregnancies... I think it helped because it was like a form of meditation..kept me positive and calm. Put some relaxing beautiful music on, music that moves you.... close your eyes, picture yourself with that little baby in your arms.... maybe there is something to be said for the law of attractions.
God Bless this little unborn soul, and you. Keep us posted . we will all be praying and thinking of you.
Mary
51 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.,RLS, arthritis
 
 


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 6/29/2008 3:09 PM (GMT -7)   
Sorry to hear your problems... I am not a doctor, but I'd like to share some insights from web research:

Water is essential to keep peristalsis happening and if you are losing water, it will mess up your electrolyte balance (use Half-Salt - sodium/potassium chloride available in the grocery store - for salting your food). This may be helpful for your heart also.

Take a probiotic (Enteric coated so that they survive passing through the stomach). This is because the probiotics have been shown to reduce gut permeability and a possible source of the problem is from sensitization to normal gut bacteria from those bacteria entering the bloodstream through a porous gut. If this helps, you should notice a benefit after about a week.

Try a low carbohydrate diet for a few days. One possible contributing factor to the cycle of inflammation is activation of the stromal cells' production of MMP-3 (stromelysin-1) by excess butyrate which is mainly produced by intestinal bacteria. A low carb diet will reduce the butyrate and hopefully then reduce the MMP-3 which is the main destructive agent found in Crohn's patients. If you have to have fibre, try to make it cellulose (vegetables) or wheat bran (hard on your digestion probably). Other fibre sources are also sources of butyrate production. I would suggest that you try this for only a few days to test the result.

This is a bit simplistic, but I hope it might be helpful.

http://aem.asm.org/cgi/content/abstract/73/4/1073

http://ajpgi.physiology.org/cgi/content/full/279/5/G918

http://209.85.141.104/search?q=cache:LkBvI8HmGhcJ:www.wjgnet.com/1007-9327/12/5606.pdf+Th1+%2B+crohn&hl=en&ct=clnk&cd=7&gl=ca

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 6/29/2008 5:47 PM (GMT -7)   
Hi! I don't know if I wrote to you before or another member but I have a friend who had to have her appendix out while pregnant. It was really scary but she is doing just fine and her baby is due Aug. 24th. I know she was in her second trimester but I don't remember what week. They told her if it was one week later she would have lost her baby. While I know avoiding surgery is your best option maybe you should ask your doc if there is a point at which they would not be able to do surgery. If it looks like there is a good chance you will need it, it might be best to do it sooner rather than later. I'll be thinking of you and hoping everything works out great!
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.


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 6/29/2008 7:31 PM (GMT -7)   
My obstructions got worse within days of becoming pregnant. My bowels started to slow down from 20x/day average to less than 10, and now it's 5 or less. So at least this part is good. I can still feel my crohn's flaring though.

I take primal defense probiotic, prednisone, and I tend to follow the maker's diet (not 100% because some doesn't work for me). I mostly eat a natural plain diet, low or no sugar, few grains, but now I've been tolerating white bread better than fermented bread, so I do eat natural white bread (no preservatives, etc). The GI wants me to do ensures, but they hardly digest with me and I am afraid of the sugar in them.

The obstructions have improved over the past couple of weeks, but the GI told me that as my uterus grows it could cause more obstructions because of the squishing of organs inside. Meanwhile, I'm trying to wean of pred, but not sure if it will happen. I'm presently alternating between 22.5 mg and 25 mg every other day.

I'm just hoping my crohn's and stricture will heal and my heart stay strong.

Anyone ever heard of a stricture opening up on even a little its own?

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 6/29/2008 8:53 PM (GMT -7)   
Roni - the probiotics I read about that were successful in reducing the permeability of the gut were the more common Lactobacillus/Bifidobacter/Streptococcus/and so on. Primal Defense is a mix of HSO's which usually do not remain resident in the gut. They offer the advantage that they eat other bacteria and fungi, as well as providing some nutrients. Note that the usual formulations of the older probiotics do not enteric coat the bacteria and between 90 and 99.9% of them are destroyed in the stomach. Since there are about 10,000 times the number of bacteria in a capsule already present in your gut, you need to get as many of the capsule bacteria into your gut alive - this means enteric coating.

I know that it is a pain trying to alter your diet, especially when you're suffering, but the possibility of reducing the ongoing damage is a nice carrot. I have never seen the carb-restricted diet suggested for Crohn's (But I am still pretty new to this) - it is only a result of the reading that I did which seems to show that the damage is caused by MMP-3 which is expressed excessively by the presence of butyrate, which is formed as a result of carbs and some types of fibre in the gut. It may do some of what the meds that you can't have would do.

I just Googled low carbs and Crohn's and it seems to be not a new idea. It is not just a fad idea though and the results they talk about look promising.

Post Edited (Keeper) : 6/29/2008 9:57:13 PM (GMT-6)


Robin
New Member


Date Joined May 2008
Total Posts : 10
   Posted 6/29/2008 11:30 PM (GMT -7)   
I don't know you, but I'm thinking about you every day.  ::hugs::

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 6/30/2008 5:17 AM (GMT -7)   
Hi Roni My obs opened at least the first one with the pred. but my last one didn't. I was only having a little liquid BM's and going in my sleep. I am glad to hear you are feeling somewhat better now.Hope things get better for you and will be thinking of you. lol gail
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