What things concern us the most about having Crohns??

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spiceman
Regular Member


Date Joined Aug 2008
Total Posts : 51
   Posted 12/17/2008 3:35 PM (GMT -7)   
 
Hi, I'm sure we all have our own worries about having this awful illness.
 
My personal ones are : 1. Oneday having a bag fitted.
 
                               2. The damage I could be doing to myself taking all the medications over the years.
                                 
                               3. Living a short life.
 
                               4. Living with pain.
 
                               5. coping with incontinence.
                                
                               6. multiple surgerys
 
Please share all your views on the subject.  Cheers.
Medication at present 6mg Budesnoide, 200mg Azathioprine, 3000mg Pentasa.
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 12/17/2008 3:38 PM (GMT -7)   
for me, it's incontinence and urgency, I use natrual anti-inflammatories so I don't have to worry about damage from RX. IBD doesn't necessarily shorten our lives, it just makes it difficult so I don't worry about a shortend life span.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/17/2008 3:47 PM (GMT -7)   
Hi Good thread. Keeping my self worth and not get depressed.
Mostly my child
med side effects
running out of patience...lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


gemini kiwi
Veteran Member


Date Joined Nov 2006
Total Posts : 1136
   Posted 12/17/2008 4:06 PM (GMT -7)   
all of the above.....and then some.

kam#7
Regular Member


Date Joined Jun 2008
Total Posts : 125
   Posted 12/17/2008 4:24 PM (GMT -7)   
1 - Pain, Pain & Pain
2 - Getting a "bag"
3 - Total incontinence (I already have enough)
4- Vomiting
35 year old female (newly married) - Diagnosed w/Crohn's 2002 - Surgery 2004

Currently taking: Pentasa, Entocort, Imuran, Zoloft, Seroquel & Ativan as needed


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/17/2008 4:25 PM (GMT -7)   
Side effects of medicine, how much it will cost over time, finding an insurance company that will cover me when I'm too old to be under my father's policy, quality of life, and doing the things that I want to accomplish in life. It had always been my plan to travel and work all over the world. I love to learn new languages and experience new cultures, but I realize that it will be much harder now to go to some places(Africa for instance because of the food and required immunizations), or Japan because of the diet I have to be on, and the medicine I MUST have. Energy levels taken into account too. These diseases are still not widely understood so I know that it will make things much harder in terms of pursuing my livelihood. I refuse to stay in one spot forever because I was diagnosed with Crohn's disease...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."


sulleysullivan
Regular Member


Date Joined Dec 2008
Total Posts : 44
   Posted 12/17/2008 4:29 PM (GMT -7)   
1. incontinence and the embarrassment that can go along with it :(
2. if i want to have kids and possibly give them crohn's
3. feeling feminine and sexy so i guess that would go along with self worth?
4. how things are going to go once i'm back to work i'm a cosmotologist so i'm on my feet all day and at school had plenty of trouble with my ankles being swollen and sore all the time but i'm not sure if that had to do with my erethyma nodosum (sp).
5. getting my mom to stop worrying so much ha ha
"I feel infinite." -the perks of being a wallflower


princessjo
Regular Member


Date Joined Oct 2008
Total Posts : 20
   Posted 12/17/2008 11:01 PM (GMT -7)   
Fears first!

1. A recurrence of the disease (am in remission for the moment). This give me nightmares...somewhat literally. I don't want to go back!

2. If it was to reoccur, the chance it would worsen (incontience etc).

3. Needing a bag.

4. Having to follow a strict diet.

5. Having a recurrence after having a child.

6. Shortened life span.

7. Needing more meds.

8. This disease will rob me of the chance to have a child.

9. That because of my op (bowel resection) I may not be able to have my future child's birth the way I want (no C-section).

10. More ops!

11. Pain, Pain, and more pain. Been there, don't want to go back!

Now that has made me thoroughly depressed:

On the plus side:

1. It has given me greater appreciation of life: made me realise I have to live each day to the full, because I don't know when it will come back, and I won't be able to do so as fully as I can now. (hopefully not coming back for a very long time, if ever)

2. It's not an ultimate death sentence, as in next month, next year.

3. I won't let this disease make me feel unsexy: hell, I am always fabulous! smilewinkgrin


Jo
Who will tell whether one happy moment of love or the joy of breathing or walking on a bright morning and smelling the fresh air, is not worth all the suffering and effort which life implies.  ~Erich Fromm
 
discussing Crohn's Disease, infertility, fostering, fundamentalists, my family, and my babies with fur :)!

Post Edited (princessjo) : 12/17/2008 11:06:28 PM (GMT-7)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 12/18/2008 7:35 AM (GMT -7)   
LMills - I wouln't rule out places in Asia.  I was in Singapore and Thailand last March and felt better than ever! The diet there was so great.  It wouldn't work with those that follow strict SCD because it does contain a lot of rice and noodle dishes but it worked great for me.  Everything was so fresh, no preservatives, no additives, and very low dairy.  I stopped at a stand in a "mall" and asked for a cup of pineapple juice.  She literally picked up a pineapple, stuck it on a juicer, and handed me a cup.  YUM.  Nothing added to it.  No yellow dye.  Etc. 
 
I really think the diet there contributed to me feeling so well.  I should post the picture of the best chicken soup I have ever had, and it was in the airport!!
 
 
27 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.


meowgirl
New Member


Date Joined Dec 2008
Total Posts : 12
   Posted 12/22/2008 10:12 PM (GMT -7)   
LMills -- despite being hospitalized four times this year for a total of almost 30 days, I did something really insane and went to Turkey for 2 weeks in April. It wasn't easy, but I managed to get through the whole trip without either crapping my pants or having to use one of those hole in the floor toilets. (Pretty hard to stand and aim for us Crohnnies) Anyway, it was exhilirating and I'm so glad I did it, even though I got pretty sick when I got back. I used to think having a bag would be the worst thing that could ever happen to me, but now, I wonder if it wouldn't be a freedom, from the constant pain, fatigue, and need to always have a bathroom in close proximity. I think my biggest worries right now are losing the will to live, dying from the drug combos or complications, or at the very worst, being a burden to my husband. How can I feel like his sexy wife after he has seen me screaming on the toilet in the hospital more times than I can count? No matter how much lingerie you buy, if you are always too tired to do it, you feel like a failure as a wife.
Used to be normal...but now...I'm just frustrated and want my life back...Struggling to keep my head above water
37, Dxd with Crohn's, IBS, Fibromyalgia, Depression, Anxiety, Asthma
Just started Remicade, also taking Azathioprine (Imuran), Entocort on and off, Levbid, Cymbalta, Lexapro, Xanyx, Nexium, Singulair, pain meds as needed


sulleysullivan
Regular Member


Date Joined Dec 2008
Total Posts : 44
   Posted 12/22/2008 10:21 PM (GMT -7)   
meowgirl i know what you mean about feeling sexy. before i started meds or was even diagnosed i was always too tired to have sex i thought my fiance was going to just get sick of the lack of energy i had, and leave me. i was too tired to do anything not just sex but going to get groceries or have a nice night out. after he's seen me in the hospital knows i go to the bathroom 10 times a day he still loves me and i know he thinks i'm sexy even when i dont. i'm sure your husband feels the same way about you and doesn't see you as a burden and never will. for sickness and in health right? :)
"I feel infinite." -the perks of being a wallflower


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 12/23/2008 5:23 AM (GMT -7)   
-Never finding a cure... or miracle drug that will lessen flares without turning me into a maniac.

- shortened life span - I want to see my daughter grow up and get married. Have all my paperwork ready just in case I don't make it far.

- Pain/Nausea - sooooo tired of this. This has become my part of my daily life. I now have no life because of this.

- Surgery - don't want it if it won't fix it... and it doesn't fix it... it always comes back.

MsRockonBelly21
Regular Member


Date Joined Dec 2008
Total Posts : 42
   Posted 12/24/2008 10:11 AM (GMT -7)   
  • Anxiety and depression that tags along(on meds now)
  • Having complicated surgery(still waiting for the answer)
  • Shortened life
  • Fatigue
  • Pain, aches, and swelling
  • Having to wear a bag one day
  • Getting a real job(I babysit)
  • Wondering will I find someone who understands
  • Will I be able to have kids
  • Will I pass this illness to them or their kids
  • Will I be hospitalized again
  • Will I get to the point I need to take a million meds



Don't judge a book by its movie.
 
In the past I have taken Asacol, 6mp, Prednisone(3x),  Remicade, Flagyl, Cipro, Phenergan, Colazal(think there was others).                       
 
I am on Metoprolol for high blood pressure and heart beating too fast. On Citalopram for my anxiety and depression. Started taking fish oil capsule for my high cholesterol. On Calcium pills. On Remicade(its my second time being on it because a former doctor refuse to give it to me so I left) 
 
Diagnosed at age 14 in 2001, first started sick getting at age 13, Sept 2000. I am now 21


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 12/24/2008 6:28 PM (GMT -7)   
1. First and foremost, pain. I'm constantly afraid of getting into pain (or if I'm already in pain, having even more pain)

2. Serious complications (such as those that could be life-threatening or severely disabling)

3. Not being able to finish college and work at a job in the medical field (This won't be the end of the world, as if I have to go on disability, I would be able to focus full-time on my writing, but... It would be a major disappointment. Because its always been my dream to succeed where everybody else in my family has not *most of them haven't even finished high school*)

4. Further diet restrictions.

5. More medicine.

6. People thinking I'm a hypochondriac or making things up for attention...

I don't want to have kids (those with Crohn's usually turn out to be high-risk pregnancies; I don't want to take such a risk)... Plus, they're a huge financial burden and require a lot of attention. While I do think I'm capable of giving that attention and still live a happy life, I'm the sort of person that craves to go out in the world and to bury myself in work (research, books, writing)... So, ideally, I do not want to be a parent...
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.


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 12/25/2008 3:37 AM (GMT -7)   
hafnt really thort bout my worries bout this disease....there nothing really ne of us can do,things change so quickly in our lives as for bags well i had one for 2months last year and they really arent all bad,i knw if the time comes if i need one then thats what would be the best option for me,and i would never have to get up through a movie 2 tke a crap again.I just go with the flow with this disease i work when i can work and when i cant i dont as for insurance well....cant do nething bout that going for my first public c scope 6 jan,if i dnt like guess ill start saving for the next one.I just want a house,job and be happy.And i dont have time for people who think your making things up or for people who stress me out.dnt have time for them.
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


Tara13
New Member


Date Joined Nov 2008
Total Posts : 14
   Posted 12/25/2008 4:05 PM (GMT -7)   
I have only been diagnosed with Crohn's since October so I am still in a learning curve really.  The things concerning me most at the moment are:
 
1.  The eventual effects of taking medication - I have just had to stop taking Azathioprine as it was affecting my liver so we will be trialling 6MP and what I have read about that online is scaring me.
 
2.  I haven't made it back to work yet but have to attempt that in January.  What will happen if I can't work full-time ...
 
3.  The effect on my relationship which I think is pretty much over now, and knowing I may have to face this illness on my own in the future (although I do have family support).
 
4.  Becoming a martyr to the illness.
 
5.  I had wanted to start to do a lot more travelling.
Diagnosed with Crohn's 27.10.08. I'm a Kiwi looking to increase my knowledge.  As they say KNOWLEDGE IS POWER!!


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/25/2008 5:35 PM (GMT -7)   
that the rest of my life will be like the last 2 years have been

chico41
Regular Member


Date Joined Jan 2006
Total Posts : 135
   Posted 12/26/2008 12:03 AM (GMT -7)   
Very good topic.  yeah   I have had CD/u.c.  for over 12 yrs.  Have had the bag for roughly 3 months .  somedays i would rather have the bag.  Heck, when u have the bag, there is no looking for the b/r's, no waking up in the middle of the night running to the bathroom, Eating almost everything.  My biggest concern is the fear of my Remicade not working anymore.  I have been on Remicade now over 2 yrs.  Works great so far.  another one of my fears is getting Kidney stones again.  wow.  I try to live my life one day at a time and not worry about what happens tomorrow.  So being positive helps me alot with this dd. 
 
 
 
 
 

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2688
   Posted 12/26/2008 12:46 AM (GMT -7)   
Gee, so many to list! LOL

Bleeding to death.
A bag
Surgery (and having short bowel syndrome)
Cancer (both colon and from the meds)
Complications (such as eye, more fistulas, liver ect..)

I really can go on and on!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure).

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