Share Facebook


06-28-2016, 07:38 PM   #1
theblondecrohnie
 
Join Date: Jun 2016
Location: Melbourne, Florida
Why me?

Hey guys, I'm new to this forum. I never really gave much thought to support groups but I figured with everything that's been going on lately, heck, why not talk to people who understand what I deal with. I am 21 years old. I was diagnosed January of 2013 and about to graduate high school. So far I've been on 9 different medicines and have failed each one miserably. I have been in this flare going on 4 years now. Each day is harder and harder and I feel like giving up. I've been to 3 different doctors now and each have told me I am a very hard case. The pain I go through each day is exhausting and it's beginning to effect my job and school life. I cry every single morning because I don't sleep through the night due to stomach pain and throwing up. My boyfriend is so supportive of me but he consumes his life around my illness and it makes me feel guilty. I think to myself all the time, why me? There are bad people in this world who probably are as healthy as a horse but yet here I am on the verge of just throwing in the towel because I can barely stand up straight for an hour. How does everyone fight through the pain? Does anyone have any little secrets to help manage it? Hot baths usually work for me until I get out. Thanks for listening to me vent <3
06-28-2016, 09:08 PM   #2
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
My doctor has sent me to a specialist. He said mine is a difficult case. Have they tried you on any biologics? Your boyfriend is great to be supportive. Please feel free to come here anytime. Has the doctor given anything for the pain?
06-28-2016, 09:20 PM   #3
woops!
Senior Member
 
Join Date: Apr 2010
Location: Virginia
It sounds like you are going through a lot! I am sorry that things are bad. Hot baths do work good, have you tried a heating pad? I knew a girl that had this type of fanny pack she bought that you heat up some type of bean bag deal and put it in there. She uses it for period cramps, it might work the same for abdominal pain. Have you had a chance to look through the different med support groups on this site? You might find different treatments you could ask your MD about. As for the feeling of wanting to give up, I think that many have felt that way at some point and time. I would get sad, then mad, sad again. It is very hard. Have you talked to your MD about how you feel? Many crohns and colitis suffers have at times delt with depression. I'm not saying that this is what's happening with you, but perhaps something to discuss at your next MD visit.
I'm glad you decided to give online support groups a try, sometimes just saying how you feel to others who have been through it really helps me.
Good Luck
Woops!
06-28-2016, 09:23 PM   #4
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
It sounds like you are going through a lot! I am sorry that things are bad. Hot baths do work good, have you tried a heating pad? I knew a girl that had this type of fanny pack she bought that you heat up some type of bean bag deal and put it in there. She uses it for period cramps, it might work the same for abdominal pain. Have you had a chance to look through the different med support groups on this site? You might find different treatments you could ask your MD about. As for the feeling of wanting to give up, I think that many have felt that way at some point and time. I would get sad, then mad, sad again. It is very hard. Have you talked to your MD about how you feel? Many crohns and colitis suffers have at times delt with depression. I'm not saying that this is what's happening with you, but perhaps something to discuss at your next MD visit.
I'm glad you decided to give online support groups a try, sometimes just saying how you feel to others who have been through it really helps me.
Good Luck
Woops!
Amen

06-28-2016, 09:39 PM   #5
Lady Organic
Forum Monitor
 
Lady Organic's Avatar
hi and welcome to the forum. have you ever tried some alternative approach such as diet or enteral liquid diets? It works for some people. I invite you to look at IBD-AID diet in my signature. wishing you well.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
06-29-2016, 10:36 AM   #6
theblondecrohnie
 
Join Date: Jun 2016
Location: Melbourne, Florida
My doctor has sent me to a specialist. He said mine is a difficult case. Have they tried you on any biologics? Your boyfriend is great to be supportive. Please feel free to come here anytime. Has the doctor given anything for the pain?
I've been on 2/3 Biologics and failed them all. I'm going on Stelara which hasn't been released yet and into clinical trials. I've always been told I'm not allowed to do pain medicine because of the negative effects on people with IBD. Thank you for replying.
06-29-2016, 10:39 AM   #7
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Best to you with the Stelara.

06-29-2016, 10:53 AM   #8
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
I agree with Woops that heating pads are wonderful - I would be lost without mine, I even brought it with me when I went to Japan. It is one of the best things I've ever purchased and I don't know what I'd do without it.

It sounds like you're dealing with a lot of nausea. Have your doctors given you any meds to help with that? I take Zofran (or rather, the generic version, Ondansetron) and that helps a lot with the nausea. It's just for symptom relief, it won't get the flare itself under control, but it definitely gives me a lot of relief. Other more natural things that can help with nausea are mint and ginger - you can do things like mint or ginger teas, or you can get tablets/capsules.

As far as just staying sane through the mental/emotional rollercoaster of having to deal with having a chronic illness - I try to be kind to myself. Exercise helps a lot, but it is of course difficult/impossible to exercise when you're actively flaring. If you're able to, try some gentle yoga or take a short walk outside - even just getting out and enjoying the fresh air should help a bit. Another thing I do is get myself little treats to cheer myself up. It doesn't have to be anything big or expensive, like for the longest time I'd just get myself a new bottle of nail polish whenever I needed a pick-me-up. I tend to gravitate towards the sparkly ones, they are so pretty and make me happy. I can paint my nails even when I'm feeling really ill. It makes me feel better in a small way. Or, I'll get myself a new skien of yarn - I can crochet even when I'm ill, and I can make a gift for myself or someone else, and that makes me feel worthwhile. So get yourself a little treat.
06-29-2016, 11:46 AM   #9
lenny
Senior Member
Have you ever heard of the specific carbohydrate diet? That's what worked for our daughter. She was diagnosed at 24, was put on steroids, went into remission and started the diet. She has now been in remission going on 11 years without drugs. She feels completely normal.

Unfortunately the diet did not work for our son, who is on Remicade, but it might be worth a shot for you? I'm sorry that you are in so much pain!!!
06-29-2016, 04:30 PM   #10
theblondecrohnie
 
Join Date: Jun 2016
Location: Melbourne, Florida
I agree with Woops that heating pads are wonderful - I would be lost without mine, I even brought it with me when I went to Japan. It is one of the best things I've ever purchased and I don't know what I'd do without it.

It sounds like you're dealing with a lot of nausea. Have your doctors given you any meds to help with that? I take Zofran (or rather, the generic version, Ondansetron) and that helps a lot with the nausea. It's just for symptom relief, it won't get the flare itself under control, but it definitely gives me a lot of relief. Other more natural things that can help with nausea are mint and ginger - you can do things like mint or ginger teas, or you can get tablets/capsules.

As far as just staying sane through the mental/emotional rollercoaster of having to deal with having a chronic illness - I try to be kind to myself. Exercise helps a lot, but it is of course difficult/impossible to exercise when you're actively flaring. If you're able to, try some gentle yoga or take a short walk outside - even just getting out and enjoying the fresh air should help a bit. Another thing I do is get myself little treats to cheer myself up. It doesn't have to be anything big or expensive, like for the longest time I'd just get myself a new bottle of nail polish whenever I needed a pick-me-up. I tend to gravitate towards the sparkly ones, they are so pretty and make me happy. I can paint my nails even when I'm feeling really ill. It makes me feel better in a small way. Or, I'll get myself a new skien of yarn - I can crochet even when I'm ill, and I can make a gift for myself or someone else, and that makes me feel worthwhile. So get yourself a little treat.
Im defiantly going to invest in a heating pad. And I am on promethazine for nausea but honestly it makes me more nauseous lol.

And pick me ups are always good. I work a lot and go to school but it's getting harder and harder for me to do those things. I've always wanted to learn to crochet.
06-29-2016, 04:31 PM   #11
theblondecrohnie
 
Join Date: Jun 2016
Location: Melbourne, Florida
Have you ever heard of the specific carbohydrate diet? That's what worked for our daughter. She was diagnosed at 24, was put on steroids, went into remission and started the diet. She has now been in remission going on 11 years without drugs. She feels completely normal.

Unfortunately the diet did not work for our son, who is on Remicade, but it might be worth a shot for you? I'm sorry that you are in so much pain!!!
I have not heard of that diet. I'll have to do some research. Good luck with remicade! That was the first medicine I was put on and I failed it miserably.
06-29-2016, 04:32 PM   #12
theblondecrohnie
 
Join Date: Jun 2016
Location: Melbourne, Florida
hi and welcome to the forum. have you ever tried some alternative approach such as diet or enteral liquid diets? It works for some people. I invite you to look at IBD-AID diet in my signature. wishing you well.
I haven't put much thought into a diet yet just because everything I eat seems to hurt my stomach in some way :/ soups aren't to bad though. I'm going to check out your diet plan! Thank you
06-29-2016, 04:34 PM   #13
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Sometimes, I wish I had a heating pad.

06-29-2016, 04:36 PM   #14
theblondecrohnie
 
Join Date: Jun 2016
Location: Melbourne, Florida
Sometimes, I wish I had a heating pad.
Haha idk why I never thought of buying one before.
06-29-2016, 06:41 PM   #15
stickman7755
Senior Member
 
stickman7755's Avatar
 
Join Date: Oct 2011
Location: Downers Grove, IL

My Support Groups:
I'm sorry for what you are going through. Try and remember that it's not your fault, and that you are not a burden. Also the sky is the darkest before dawn, just keep fighting everyday and you have a ton of support here on this forum.
Good luck
__________________
Shawn 24
DX Crohn's September 2011
Remicade, questrian
Surgery Performed 12/07/11
06-29-2016, 06:42 PM   #16
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I'm sorry for what you are going through. Try and remember that it's not your fault, and that you are not a burden. Also the sky is the darkest before dawn, just keep fighting everyday and you have a ton of support here on this forum.
Good luck
Amen

Reply

Thread Tools


All times are GMT -5. The time now is 08:17 PM.
Copyright 2006-2017 Crohnsforum.com