Will I ever get better?

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Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 5/8/2008 1:28 PM (GMT -7)   
I'm so tired, I don't even know what to do with myself. It's been 7 years since I was diagnosed and I have never been into remission. Every day for the past 7 yrs I've gone no less than 10 times a day. I've been battling a tag and fissure as well. SOOOO painful. I was wondering if anyone has as many food sensitvities as I do. Here's a general list sorry if it seems to long.
Broccoli    Cauliflower   Aparagus    Watermelon    Bell Peppers    Lettuce    Green onions    Bananas    Pineapple    Oranges    Grapes     Blueberries   Plums         Onions           Carrots          Celery      Cucumber        Tomatoes  Apples        Strawberries
Coconut   Raspberries  Peas          Corn              Green Beans    Pasta       Sauces           Peanut Butter             Jams
Chocolate Coffee        Beans         Ketchup         Mayo             Mustard    Relish             Hot dogs   Hamburgers  Steaks
Chips       Gluten in general           Juice              Pop               Bread       Salt               Sauces     Seasonings   Sugars
Sweeteners  Preservatives            Vinegars         Red Meats      Pickles      Crackers         Mushrooms  Milk    Cheeses
 
These are just a few. I'm so out of it I can't even think of all the others, but I feel like I can't eat anything. I'm so tired of food that I don't even want to eat so I just grab a can of Ensure. I need to eat more calories, but I don't have many food options.

Age:22/6"1'/138lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Warfarin, Prednisone :(, 6mp :( NOT WORKING
Problems:Fissure and Tags on rectum, blood clots, ChronicUTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s
Procedures: 3 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 5/8/2008 1:51 PM (GMT -7)   
I noticed your a first time mom 2 months ago. Happy First Mother's Day! Being tired kinda goes along with the new baby. Sleep when he/she sleeps, the housework can wait! Just a suggestion, you might want to talk to your doctor, ob/gyn or gi or pcp, about post partum depression. Between the new baby, lack of sleep, hormonal upheaval, serious chronic disease, food sensitivities, depression is a real possiblility. There's nothing wrong, imho, with telling your doctor about your problems and feelings and trying an anti-depressant. I was on one several years ago after an injury and it helped tremendously. Take care of yourself and your new baby, you are the most important person in the world to her/him!
diagnosed 11/06, solving the mystery of years of on/off abdominal pain. No more "it's just a virus". 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bowel resection 9/07. Doc says no active disease, but flare-ups anyway. 11 year old son with IBS-C, on Bentyl.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/8/2008 4:33 PM (GMT -7)   
Is there a reason you're not on Rem or Humira, chronicallyill?
Co-Moderator Crohn's Forum.


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 5/8/2008 6:52 PM (GMT -7)   
Hi there, Well first off, congrats on the new baby. Sounds like your disease isn't under control. Have you talked to your GI about this? You need something that will help you, then some of these foods might not be the enemy. Secondly, I don't know if you are feeling this but I had depression after my first child, horrible. Just hit me like a rock. I went to my Gyn who prescribed something that really helped. You have alot on your plate, new baby, crohnic illness and tired. Do you have anyone that could come help out for a while. Maybe let you nap, have an hour to clean the house or just drink some tea. My heart goes out to you. It's enough just dealing with this disease but to be sick too is hard. Let me know how your doing, please call both doctors explain what is going on, don't be shy and get some help. HUGS!!!

Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 5/9/2008 9:31 PM (GMT -7)   
Thanks Kimberlayn, I am fighting depression a little bit. I have a doctors appointment on the twelfth and that's one thing I want to ask about. My mom has been a real help lately. She's been over almost every day in the last week.

ivy6, for some reason the doctors I have, all kept me on 6mp and none of them seem to want to try something new even though I've been on it for 6 yrs and have asked a number of times to try something new. They don't seem to want to look into anything for me. Are the drugs available in Canada? I've heard those drugs are pretty harsh to so i never asked about them.

crohn'sandme thanks for your suggestions. I hope to get this under control soon. I fear doing things for my child, like bath time, because we still do it in the kitchen and I can't leave her unattended in the bath when my bowels decide to start working and right now anytime I stand up I feel like I've got to go to the bathroom. Little things like that make it hard for me to do anything. So this adds on to the anxiety, which there is A LOT of, naturally. That's just the type of person I am. Some days are better than others, but mostly bad. I'll be laying in bed so exhausted that when she cries my guts just tense up and I get this shooting pain like a lightening bolt through my tummy. I know it's just nerves, but no matter how much I try no think about it and to divert my thoughts and stress it just doesn't work. I just started going back to the doctor when I found out I was pregnant because I knew it was dangerous to mess with while being pregnant. My baby was more important to me. I have a problem with doctors. I don't like to listen to what they want to do for me because I've had so many screw my life up, by putting me on drugs that were really bad for me and caused long term damage. Another issue is that there wasn't a G.I. close to my area that I liked. At one point if I wanted to see my G.I. it was an 8 hr drive away, which got expensive just to see him for 10 mins. We usually made a trip out of it, but we couldn't take a trip once a month to see someone so far away. There now is a new G.I. coming to a city 1 hr away. I'm getting a referral from the doctor I'm sseing right now. I hope beyond hope that I get a long with him. I think if I have a doctor nearby I will do better.

chas036 I have read part of it a few years ago, but I didn't think I would have the will power, like you said, to keep up the diet. I have very little self control. I do think it would work, definitely. I just don't think I could do it. I'll try to find the book and I will give it a try though. My motto is "Don't knock it till you try it"

Thanks for your posts hope to hear back from you again :)
Age:22/6"1'/138lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Warfarin, Prednisone :(, 6mp :( NOT WORKING
Problems:Fissure and Tags on rectum, blood clots, ChronicUTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s
Procedures: 3 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/9/2008 10:18 PM (GMT -7)   

Chronicallyill

Hello and welcome to HealingWell.  Congratulations on your new baby and Happy Mother's Day..........whoooooo hooooooooo your first one.

I am so sorry your Crohn's has been active for 7 years straight.  Wow,  I am here for you.  :-) My hubby has Crohn's but he has had long periods of very little activity.  He has had 3 major surgeries but other then small problems he does very well.  I hope you will get to a point of remission in your sx.

You have a right to feel depressed and what a wonderful Mother you have, cherish her.  She obvously loves you very much. 

The many stories I read here make me feel lucky to be alive and dealing with mostly mental health issues.  You are a brave person and please know my prayers are with you.

Hugs

Kitt


 
Kitt, Moderator: Anxiety ~ Panic 
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 5/10/2008 8:18 AM (GMT -7)   
Thanks kit good to have some support :)

Age:22/6"1'/138lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Warfarin, Prednisone :(, 6mp :( NOT WORKING
Problems:Fissure and Tags on rectum, blood clots, ChronicUTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s
Procedures: 3 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 5/10/2008 10:06 PM (GMT -7)   
Chronicallyill, Congratulations on your new little one. It is so hard to be a new mom and to feel the way you do. Believe me I KNOW exactly what you are going through. My CD flared so badly after my pregnancies , and my babies were 14 months apart. It seemed the first months of their lives I spent in the bathroom. When I did groceries, the cramping would get so bad that I would have to lie down in the grocery story washroom . I would put the girls in the corner with their toys or in a car seat, and lie on the floor until my legs would carry me again.
At home, I decided the safest thing would be to put a playpen, and car seat in the bathroom, so when I had to run to the loo , I would grab the girls and plop them in either one....they had toys all set up and whenever I came at them running they would laugh with glee thinking this was all for their entertainment. Long and short of it is, we made it through . You will find the strength and courage to do it too.
Another great help was the baby carrier that you wear on your tummy....a snuggly. I always had someone in there so regardless of whether I was on the toilet or doing dishes, they always felt loved and comforted .
My prayers are with you .... I know, know , know how hard it is. Hang in there. Try to look at the funnier side of things if you can....and come to us often. We are all here to support and help you through it.
Love and prayers , Mary
51 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.,RLS, arthritis
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 5/11/2008 5:26 AM (GMT -7)   
Hi I have a list of things I don't eat and most of the things you mentioned are on it I can eat white bread and lots of other things. You should write a list of things you can eat for us. I know it is a worry about the BM's and babies lots of us have managed best to not stress out over it you"ll think of way's that willl work for you.Definitely get another med. your not doing good something needs to change with your CD care. Don't give up get determined and the new GI sounds great. It could be you need a hospital stay to get you on top of things again. who knows but ensure cain't keep you going forever alone so try to get in to your GI or PG as soon as you can. Take your Mom if you need to for support and she can give the Dr. a report on how things are going to .Your lytes could be down. lol gail

moedon1
Regular Member


Date Joined Jun 2005
Total Posts : 139
   Posted 5/11/2008 6:45 AM (GMT -7)   
Congrats and Happy Mom's Day! My heart goes out to you! I wish that there was something that I could offer you to feel better. I do think it's worth asking your GI for another med. 7 years is proof enough that things aren't working. I have been fighting the battle for four. I was fortunate to find a Doctor who is young, enrgetic and totally committed to helping me through this. I have tried many of the typical meds: pentassa, entacort, asacol, methotrexate injections, remicade infusions(got pneumonia), antibiotics, probiotics and last but not least humira injections. I also take prednisone(those of you who may read this might remember my rantings on prednisone and Cushings Syndrome). The Humira has been the best so far. I've been on it since August and my body has just started to reject it and by that I mean that things are slowly goingin the wrong direction and I am spending more time in the bathroom and in pain. It's the only thing that I can take for chronic pulminary infections and a chronic inflamatory condition. I do hate it but it does help. Are the Doctors reluctant to try something because of your recent pregnancy and new baby? I know that there are potential side effects for the fetus when taking some of the heavy hitters like rem., meth., and hum. I did try a wheat/gluten free diet when I first started getting sick and it really hlped but eventually I ran out of things to eat that were safe. I have found and my doctor agrees that my body can tolerate certain foods but once I've eaten them for a while my body starts to reject them. It's the same with meds and anesthesia. I know that I have read posts from folks in Canada who take the heavy hitters so I know that they are available. Tomorrow I have a pre op appointment. I am having my gall bladder out and they are going to do a Lap. of my intestines. It sounds crazy but I am looking forward to maybe being pain free if this works. Please do take care of yourself. See a nutritionist but try to get one that is familiar with crohn's/colitis, ibs, gluten intolerance. Try to enjoy today and your new little one.
Donna
Donna
 Formal diagnosis 3/2006, IBS 1992, Degenerative Arthritis Facet block and RFA, Seizure Disorder, Severe Carpal Tunnel both hands, SVT arrythmia, 2004 cardiac Ablation
Cushings Syndrome(thanks Prednisone), Asthma, Multiple Laps for ovarian adhesion to bowel, C/5 & 6 disc herniation - plate with screws, resistant to anethesia/most pain meds.
Multitude of Meds. Have tried most Crohn's meds - now on Humira. Gall bladder removal and Intestinal Lap. sched. for June 08.


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 5/11/2008 8:49 AM (GMT -7)   

Moedon1. thanks for your post. Right now I am stuck on those drugs because I am trying my darndest to keep breastfeeding. Although I know it's hard on my body to keep up to both me and my daughter. I'm trying to reduce my milk supply by introducing formula, I can't just quit cold turkey it hurts to much when I get engorged from not feeding her. At least she will still get part of the benefits from my milk. I just don't eat enough to make all the milk she needs in one day. I have to eat a gluten free diet because it makes my tummy burn so badly and I get really explosive, gassy D. I just went to a BBQ last night and had a couple of burgers, just the burgers and i forgot to ask if they were made with crackers and man did I pay for that last night and this morning. It cleaned me right out. It really sucks because I am addicted to carbs. If you get your gallbladder out won't you have issues eating fatty foods? My aunt had to have hers removed and she gets really bad D if she eats anything high in fat. I get to see my internist in June to discuss possible drugs. I hope I'm done breastfeeding by then so I can try something different. I'm tired of this drug. It doesn't do anything for me, but make me sicker all around. When I went off of it when I first found out I was pregnant I felt a million times better. At that point I didn't know I was gluten intolerant. While being off the drug I had a better feeling for what really bothered me and I pin pointed majority of the foods I can't eat. That was the positive part of stopping the drug. In November, 3 months before I was due I had to go back on it because I was at risk of complications, cause of weight issuse and stuff. When I said I felt a million times better it felt like a surge of energy had hit my body and i felt invigorated. I think I took advantage of that and ate what ever I wanted. I learned my lesson though, because I feel like crap now. I had this thought in my head that because I was pregnant that there was a possibility that I would go into remission. Yikes what was I thinking LOL. :) Well now that I know a little more, it makes it even more difficult cause I have to say no to myself a lot more when food is offered to me. I find I'll eat before I go to a get together so I know that I'm full and won't eat the "BAD" stuff. When I go to see my Dr. I want to ask him about that new drug LDN. I talk to a lady on Daily strength. Another site I talk on and she is on it and went from 15 to 20 BM's a day down to 1 to 3 and no pain. She's feeling great and no side effects of the drug. Really cheap as well, like 30 dollars a month. It will take a lot of persuading I think and maybe a few docs before I can get my hands on it, but I'm staying hopeful.

gacrohns, Heres a list of the foods I can eat.

potatoes    turnips    yams    sweetpotatoes    yogurt    eggs    old cheddar    rice    chicken    fish    oysters    pork?    zuchinni     peaches  jello?     rice krispies        soy milk  egg noodles   kidney beans?    rice crackers    gluten free products    ricecakes   mango     frozen yougurt? Peanut butter? tea

The question marks are the ones I'm not sure of, but I eat anyways. I can't not eat sugar. When do you know when to go for a hospital stay and how do you go about it? Do you ask your doctor?

 
Age:22/6"1'/138lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Warfarin, Prednisone :(, 6mp :( NOT WORKING
Problems:Fissure and Tags on rectum, blood clots, ChronicUTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s
Procedures: 3 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 5/11/2008 5:08 PM (GMT -7)   
Hi Of the list you wrote turnips and peaches I stay away from and eat only smooth peanut butter. I make a good steamed rice dish with very small pieces of carrot and celery cooked good then put it in the steamer with white rice and flovouring and sometimes pieces of chicken breast.

I would think if you survive only on ensure and losing weight then your Dr. should be doing something for you .If your lytes are down or blockage. These would ba reason's I think for hos. stay

A tip to get off pressure build up for breast feeding is rocking the baby against your breast it will release pressure or a warm shower also releases pressure. Happy Mother's Day and keep talking want to know how things are going with you. lol gail

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 5/11/2008 5:17 PM (GMT -7)   

Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 5/11/2008 5:39 PM (GMT -7)   
Just wondering how you are doing today? Happy Mothers Day. Hope your able to get some rest too. Very important. Just checking in on you. HUGS

Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 5/11/2008 9:42 PM (GMT -7)   
thanks crohnsnme I'm doing really good today, not so much my guts, but I feel happy. Happy mothers day to you to, if your a mom?
 
I've been pumping to relieve the pressure of my milk. I do hope my milk dries up by the middle of june so i can try something new in the drug area.
 
I find that turnips mixed with mashed potatoes are my thing. They make me feel normal because I can go hours without using the bathroom, which is so nice. They do something in my intestines that just make me feel so good. I just am to lazy to make them all the time.
Age:22/6"1'/138lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Warfarin, Prednisone :(, 6mp :( NOT WORKING
Problems:Fissure and Tags on rectum, blood clots, ChronicUTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s
Procedures: 3 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)

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