HealingWell
Search Close Search
☰

Could use a good friend.

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/10/2012 9:22 PM (GMT 0)
Ok so I have posted a few newbie questions on here since I joined about a week or two ago.  Some of the questions might sound strange to a seasoned Chronie, but to someone who is new to all this it's real.  Here's ths history: I fought a very bad infection called C-Diff for 1 1/2 years and during that time was told I did not have Chron's.  They ruled everything else out and finally after being referred to the hospital infectious disease to get my C-Diff under control.  My doctor started making phone calls and had more tests done.  After swalling a camera the Crohn's was finally found.  After six hospital stays for partial blockages and finally an emergency surgery I thought things would be way different.  I just knew it was the magic solution to all my problems.  I did not realize a flare could come back so quickly.  Also, did I mention that I am only 43 yrs old and was expecting my first grandchild during all this.  Don't get me wrong I love my family very much but I think sometimes it would be nice just to chat with somone who understands. 

Part of my problem is that I live in a rual area where neighbors don't really get to know each other other than waving as they pass by.  The only family I have in the state of Georgia are my two beautiful daughters, husband and adorable grand-daughter.  Sometimes it's nice to read what other people are writing but my social skills are a little rusty. I don't mean to be seclusive but sometimes the illness requires it.  Does anyone else feel this way and could use a good online friend?

Lisa

 

Posted 8/10/2012 9:55 PM (GMT 0)
Lisa
A lot of evenings/nights there are a few of us with Crohn's that chat. We generally just go to the room where people are, but I'd be happy to chat 1 on 1 if you'd like.

If I didn't have the people here, I would feel more alone than I do. I have made some great friendships with people who truly understand what I'm going through.

Oh, and it's typical for people to be diagnosed in late teens/early 20's, though I've heard of people being diagnosed in their 70's. Each of us is different in the meds/foods that help us, and no one's crohn's is the same as another's. You learn what works for you over time. It does get easier over time I think, as you learn more about you and how your body works.

Hopefully I'll chat with you soon!
Posted 8/10/2012 9:56 PM (GMT 0)
> I don't mean to be seclusive but sometimes the illness requires it

I feel the same way. Partly because it's embarrassing, but when I'm flaring (like I am now), I do not want to be around other people at all. Period. I'm generally tired, cranky, weak, oh and of course poop-fest 2012 doesn't help.

But at the same time, I *do* know that support is needed during the bad times, so that's why I visit these forums. I hope someday I will feel well enough so that I'm not on here as much, but right now the Crohns forums here and elsewhere are all I have because nobody else in my life really understands what I have to live with on a day to day basis. People do mean well, but it's just not the same as having someone who totally gets it. We're all struggling to get through the same thing and I guess it is just more comforting when you are hoping we'll all be able to pull eachother out of this mess someday... even if it's just by offering emotional support during the bad times.

That said, I'm sorry you are feeling so poorly. I hope that turns around soon. xoxo
Posted 8/11/2012 12:42 AM (GMT 0)
Hey, LGE, how far from Atlanta do you live? I moved to Atlanta almost two years ago, so, depending on your location, we might be able to have the occasional CD venting session.
Posted 8/11/2012 12:11 PM (GMT 0)
Becky - I would love to have a chat. Is there a certain time you and your friends meet online?   The only chat I have ever done was on facebook with my daughters.  Is it done the same way?   WingZero - It's nice to know that I am not the only person who feels secluded.  Sometimes when I think about the easy outgoing person I used to be I want to scream.  My husband used to joke that I never met a stranger, but now I just feel like I am the one who is strange!!!!  I have been at home so much that I really have forgotten how to talk to people!  Anytime you need to vent I am here.  Kinda weird but sometimes it helps just to read what others are feeling.  Then you start thinking ah "So I am not going crazy"!!!   nawlinscate - I am actually about 1 1/2 hours from Atlanta. Right now I am having a hard time leaving the house.  One of my biggest fears is being stuck in traffic!  It's funny now but I have had this happen a few times and OMG it was horrible!  I take a goodie bag with me everywhere I go (clean clothes, baby wipes and several plastic bags).    Questions hopefully one of you can answer:   Can prednisone affect your mental health?  I have been taking 40 mg per day for about a month and have noticed changes in my behavior. Also is 40 mg the normal dosage.  My doctor used to start me on 40 for the first week or two then have me taper my dose by 10 mg per week.   Has anyone tried Remicade?  I had two starter doses prior to my surgery in Feb but the doctor said it takes several doses before you call feel the benefits.  I am a little scared of this drug and would like to hear from someone that is taking it. The only thing I noticed after taking the infusion was that I felt really tired for about a week.      We have community groups for alcoholics, drug addicts, cancer patients, etc which I think is a wonderful idea but what about us Cronies’?????  Are they afraid we will clog their plumbing??   Lisa  
Posted 8/11/2012 1:21 PM (GMT 0)
Prednisone definitely makes some people (*cough cough*) crazy. It's like being pregnant, but I tend to swing more towards the rage side of things. I'm on remicade now, and have had 4 infusions... none of which have seemed to do anything. I'm getting a 5th one tuesday and starting 6mp today. Apparently they work better together. Might want to bring that up with your doc depending on the severity of your disease. I haven't had any terrible experiences with it *knock on wood*, but I don't especially like the long infusion time or having to sit in the middle of a room while a bunch of people come and go. It's kind of stressful.
Posted 8/11/2012 4:57 PM (GMT 0)
WingZero - I actually laughed out loud when I read your first two sentences! You never really know what you want with people or food!!!   Ahhhhh and the food tastes so much better with the Prednisone, which is not good for the intestines. My mood swings are horrible.   I am either full of energy or have completely worn myself out from the adrenaline it gives me!   I am going to give the Remicade a try to see if it helps.   If it doesn’t I will ask my doc about the 6mp.   Did anyone tell you how long it would take before you notice a difference with the Remicade?   All mine said was it takes several doses before you see the benefits. I have heard that it can take up to a year. Thank God my local hospital has a pretty nice infusions center.   Each person is given a comfy chair that lays back, pillows, blankets, their own TV and it has wooden cabinets on both sides plus divider curtains so you’re not just staring at each other.   I am a little scared of the Remicade because cancer runs really deep in both my parents side of the family.   I currently have an aunt who is fighting breast and lymph node cancer.   But I guess desperate times call for desperate measures when you don’t have much quality of life!   It sounds like your Cohn’s is pretty bad. I hate what this does to us and it is so hard to explain it to others who just don’t “get it”.   Let me know if the 6mp helps.  
Posted 8/12/2012 6:58 PM (GMT 0)
Hi Lisa,

I've had Crohn's for 39 years, diagnosed in 1979 at the age of 13. Talk about "wait, what?" They called it "Ileitis" back then, a term that I no longer hear from physicians.
The very first time I had been prescribed Prednisone, whew, at the dinner time was a new adventure and a lot of staring at me like I had been an animal, lol.
I ate 8 pieces of chicken and massive spoonfuls of mashed potatoes the first day on Prednisone. I felt high for 2 days, very aggressive and the Gastroenterologist warned my mom I could feel "crazy" or "doing crazy things." Definitely true, I did feel exactly that way.

I previously posted an experience I had while in the hospital some years ago if you would like to read it for a good laugh-
www.healingwell.com/community/default.aspx?f=17&m=2481935

The first time Prednisone was prescribed to me, it was prescribed at 40mgs. The last time, last year it had been prescribed at 60mgs. A very quick taper from 60mgs to 30mgs as I suffered from insomnia, not sleeping for 2 days at a time.

When my symptoms started at 7 years old, yeah, bad times for sure. Issues with urgency, diarrhea all the time and kids can be cruel in school. Having to go to the bathroom in school just wasn't an option to me. In high school I had been allowed to go to the nurse's office to use the bathroom there. My grandparents lived a block away from the high school, I very often left the school grounds and went to my grandparents house to use their bathroom. Usually having to run away from the school's security guards, I was already a very fast runner but had an extra incentive to make it to the bathroom a block away. So, no way they could catch me. smilewinkgrin

I never told friends I had Crohn's except my very best friend, the others would just have no clue and I ultimately felt it wasn't worth telling them.
I didn't have outlets such as the internet to discuss Crohn's, I dealt with my Crohn's as a fight and something I hated with such a passion. I went out of my way to be a very mentally and physically strong person. I've always been a gym rat, martial arts, meditation, you name it. I did it just to prove to myself what I can do and to the doctors. Believe me, this was during those times of being keeled over in pain, times I would think I wanted to stab myself in the stomach with a knife. I was that angry!
Also there have been times I decided it's best not to be around others, I didn't want to be in a position where I may snap at someone who is undeserving of it. I would take it out on the weights. yeah

I'm currently 6'1 @ 215 pounds and yes, have active Crohn's. I had a lower bowel resection 16 years ago or so, the Crohn's returned exactly where the lower bowel resection took place.
Currently there is inflammation and it's ulcerated. Remicade has been offered to me but it's not something I am going to take, so I can't comment on that.

My mom was recently diagnosed with breast cancer and now the roles are reversed, I now feel how she felt seeing me ill, going through surgeries, hospital stays, Etc.
I hate it, I'd much prefer to go through everything for her but she too is strong, active, determined and fortunately, very healthy which is beneficial for her treatments.
It's my turn to be on the other side, help her and be there for her. My Crohn's has to take a back seat, whether it likes it or not. :-)

I too, would be more than happy to join everyone in a chat. I decided to be on these forums for my experience with Crohn's, lend an ear to someone who wants to vent and or give advice.
✚ New Topic ✚ Reply