Need any suggestions, please...Flare that will not leave and running out of options

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80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 2/23/2010 3:59 PM (GMT -7)   
Hi everyone...
This is cross-posted in the UC forum.
 
I am completely at the end of my rope. I don't know where to go from here and I will take any suggestions.
 
I have Crohn's Colitis and have been flaring since May of 09. My main symptoms are lots of diarrhea and blood. I have been on 40mg of pred since then, and have had a HORRIBLE time tapering off. I'm now on 25 mg and cannot get below that. I have tried just about everything (see my signature) but I can't seem to kick this. I started colocort enemas 3 weeks ago and that helped a lot at first, but then I tried to taper my oral steroids down to 22.5, and now it's BLOOD CITY and getting really hard to retain my enemas, so I'm going back up to 30mg today (GRRRR!!!) after talking to my dr. He is wanting to do a scope asap.
 
 It's getting to the point where I have no options left. I am running out of money for prescriptions, I can barely go to work but I have to because I'm so poor, and I have lost so much weight that I cannot afford not to eat. I am 5'6 and 110 lbs. I am planning to eat as little as possible in the next few days and what I will eat will be like applesauce, chicken, carnation instant breakfast, potatoes, toast, etc.
 
I just don't know what else to do. Does anyone have any ideas? My gastro is GREAT but even they seem to be at a loss. I'm so incredibly dejected and ready for some hope. I would love ANY suggestions, please!
 
I should also add this: I don't think I have hemherroids; I've never had them before, but can doing enemas cause them? I'm getting really sore around there, although that could just be from the constant diarrhea...I don't know. I have done Rowasa enemas before and I did not tolerate them well at all--caused more blood and diarrhea. I know I don't respond well to 5ASAs but maybe part of it was that my colon just doesn't like enemas? I don't know. It seems to be getting worse as time goes on. At first I could retain the colocort all night but now I'm lucky if I make it 5 hours (sometimes lucky if I make it 10 minutes!). I'M SO FRUSTRATED!!!! :(
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Rowasa Enemas, VSL #3 DS.
 
Currently on: 25mg Prednisone (Tapering SLOWLY from 60), 125mg Imuran, Psyllium Seed Powder, Colocort Enemas, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Align Probiotic, Vesicare (for urinary retention). 


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 2/23/2010 4:17 PM (GMT -7)   
When I started reading your post, I thought of Xifaxan. That was what made a huge difference for me. 20+ down to 5 trips. But then I saw that in your profile. So my question is, did you do it long term or just a short course? For me I did a one month trial to see if it would help ( approved and paid for by my insurance), then when we knew it did, my doctor got them to approve it long term and I have been on it ever since. 400mg, 3X day.

Also can your doctor give you anything to just plain stop you up, for lack of a better term. Lomitil, Questran or Immodium anything to help you retain some nutrients and slow things down a bit. And what about an anti spasmodic like Bentyl.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


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


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 2/23/2010 4:45 PM (GMT -7)   
Also, did you try some of the meds together? Like Remicade + Imuran or 6-mp. Some people have good luck with methotrexate.

Also, I suggest trying enteral nutrition - maybe a feeding tube, or going on a completely liquid diet like ensure or something else, like Absorb Plus. I know when my husband is flaring badly, the only thing he's somewhat able to tolerate and possibly absorb (hard to tell) is ensure. I'd probably give enteral nutrition a shot, especially if nothing else has worked.

I hope you get a solution soon. Hang in there!

Hugs,
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Stomach Flu Feb 2010
Canasa (1gm), Lialda (4.8 gms), Remicade (6 weeks), Pred (5mg every other day)
Hoping to stop pred, and move remi back to every 8 weeks soon
Currently In Remission


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 2/23/2010 4:51 PM (GMT -7)   
I second the enteral nutrition suggestion, whether taken by mouth or tube (works the same either way).

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 2/23/2010 7:32 PM (GMT -7)   
I have had CD for 12 years. I've had a resection and multiple obstructions and have had mostly moderate and some severe CD. My illness has been non-stop, but people here have helped me find ways to minimize my symptoms as much as possible.

Here's what I find helps the most:

Start drinking chamomile tea every day. Also decaf green tea. Don't use sugar; instead use unpasteurized honey or organic honey.

If you are desperate enough (as many of us are), I suggest you try the Maker's Diet and switch to a much stronger probiotic that has at least 6 different organisms in it. Align only has 1 probiotic which is not enough for ppl like us. Maybe get some digestive enzymes too.

I don't know what your diet is like but it could have ALOT to do with your symptoms.
If you haven't already, cut out all sugar, wheat, and processed food for at about 1 month. Dairy too, if you're lactose intolerant.

Eat a very natural diet: potatoes, rice, well cooked pureed veggies & fruit, rice pasta, real butter/olive oil for cooking, you can also try sourdough bread (It's wheat, but very easy on the tummy). Sourdough bread is at all the grocery stores. You can get white, rye, etc.

I now eat organic rice pasta and it tastes the same. I love it. I put butter and parmesan cheese and some sea salt.

The diet you suggest sounds good, but not instant carnation breakfast. It's full of sugar and chemicals and you likely won't even digest it. When I used to drink Ensures, they just went right through me, sometimes they still smelled like chocolate. LOL.

Some people here have tried Maker's Diet or Specific Carbohydrate Diet with excellent results, even remission.
These type of diets are much easier on the tummy and easier to digest. Try one for a month and see how you feel.

By the way, the last time I was on prednisone, it took 6 months just to ween off once I got to 12.5 mg!!! I feel for you.

Best wishes.

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 2/24/2010 1:55 AM (GMT -7)   
Don't know much about what you are going through/suffering but the enteral nutrition sounds good-it will give your body all the nutrients/calories you need and it will also give your system a rest (as the 'foods' in the drinks are partly digested) so much more easily absorbed.
I do not know how long you would need to take them for though-typically with children it is 7/8 weeks

Hope you get some relief soon.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 2/24/2010 4:56 AM (GMT -7)   
Thanks for all your replies, everyone. I have Lomotil and take it if I have to. Same with Immodium. However, I have bladder issues and those tend to make the bladder stuff a lot worse. I have been taking both lately, though, because the diarrhea is so bad, and it is helping a little...still pretty bad though.

I tried Xifaxan for about a year...I started flaring at the end of the year on it.

I would like to find a probiotic that could help, and I understand you need one with lots of strains of bacteria in it. My GI gave me the Align, so I guess that's what he recommends...? VSL has a lot in it and that made me so sick. So I'm weary.

As for the SCD, it just seems SO involved and restrictive. It talks about eliminating some of the only foods I rely on. That scares me. The Maker's Diet I don't know much about and I don't know how to know about it without buying the book...I will see if I can get it from the library.

Thank you guys for your replies so far. I really appreciate it.
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Rowasa Enemas, VSL #3 DS.
 
Currently on: 25mg Prednisone (Tapering SLOWLY from 60), 125mg Imuran, Psyllium Seed Powder, Colocort Enemas, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Align Probiotic, Vesicare (for urinary retention). 


Dave123
Regular Member


Date Joined Feb 2005
Total Posts : 223
   Posted 2/24/2010 3:14 PM (GMT -7)   
Have you considered a clinical trial? You are a good candidate having failed so many treatments. I've been in half a dozen trials over the years with some very good success in some, others did nothing. Check out clinicaltrials.gov to find one.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 2/24/2010 3:19 PM (GMT -7)   
Yes, actually, in order to get my colonoscopy for free, my dr wants me to try to qualify for a trial. I'm going in tomorrow to find out more details and stuff. I tried to get into this trial about 6 months ago but wasn't flaring badly enough to qualify. We'll see this time, I guess.
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Rowasa Enemas, VSL #3 DS.
 
Currently on: 25mg Prednisone (Tapering SLOWLY from 60), 125mg Imuran, Psyllium Seed Powder, Colocort Enemas, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Align Probiotic, Vesicare (for urinary retention). 


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 2/24/2010 5:17 PM (GMT -7)   
Have you gotten a second or third opinion? I always think its a good idea to get one. You don't have to continue seeing the new doc. But it might be good to hear what someone else has to say.
Current meds:  Remicade and Imuran 50mgs
Tried:  Prednisone, sulfasalzine, lialda, antibiotics
28 yr old female w/ crohn's colitis
NOLA, GO SAINTS!
 


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 2/24/2010 7:18 PM (GMT -7)   
80sChick said...

As for the SCD, it just seems SO involved and restrictive. It talks about eliminating some of the only foods I rely on. That scares me. The Maker's Diet I don't know much about and I don't know how to know about it without buying the book...I will see if I can get it from the library.


I know SCD sounds awful, but it's really not that bad. I've been eating that way for over a year, and can't imagine going back to my old diet. There are plenty of familiar foods to eat too. Tonight I had a bison burger with mustard, pickles, and cheese, butternut squash, and green peas (I never used to be able to eat veggies). For dessert, I had a tablespoon of almond butter and some frozen yogurt.

When you go to your library, check out "Breaking the Vicious Cycle" by Elaine Gotschall.
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods

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