Quality of life

[donna martinez]

quality of life

I'm newly diagnosed and have struggled thinking my quality of life will drastically change. In reality I think its actually gotten better because my relationships in this short time have gotten so much stronger and closer. How does everyone thing all in all their life has been dealing with Crohn's disease.

 

[Crohn's 35]

Wow such a question and keeping this short as possible, but relationships are very important, and in my past with other jerks who never even went to a doc appt or gave a rats behind.... that is why they are left behind lol. I have a rough time from time to time , as some of us do, but with the support of my husband, and we are truly best friends has made such an improvement. My quality of life sucks most of the time but having support here and at home does make it easier to cope. That's my short version!

 

[Jennifer]

That's such a loaded question. Hmmm, As with most others everything has changed, not just frequent bathroom visits and having to buy creams and wipes because of it, well, physical symptoms aside I feel the need to pick and chose what I can do be it, go to school/work that day, go on a long trip, using public restrooms... this list could actually go on for a while. How'd you all like that run on sentence? Anyway, the things that have made my quality of life better were being more open about my disease and not trying to hide it. Cause then you know who really cares and you don't have to live in fear of losing friends or anything like that. Having people around you who care are really important. One other thing that makes it better for me is to always own a cat. Its the idea of caring for something else that's helpful for me and an animal is the one thing you can say anything to and they won't judge you, mainly because they have no idea what you're saying but they're always there and their softness and warmth is very therapeutic.

 

[My Butt Hurts]

My quality of life is probably better due to having Crohn's. As hard as it is to get off the couch during a flare, it makes me appreciate the times when I am feeling well. I appreciate when I can eat and enjoy food. As bad as Crohn's gets, someone always has a situation worse than I do.

I guess I was lucky that I was already established in my career and married and had one of my two children before diagnosis, so I didn't miss out on my childhood or college years.
When flaring, we don't go too far from home, but it's okay - it keeps us close. We enjoy the company of each other because that's all we can do sometimes.

I am also suuuuper lucky that my husband has been amazing through my diagnosis and flares.

 

[Keona]

I am new to all this so I don't quite know how it will affect me. I think I have had it for a long time but it has gotten worse causing daily pain.

For me it is the daily moments that make life spectacular. Since I don't have family, I am overwhelmed with the distance friends will go for me just to help out. I was always very independent and even though I still am, I tend to lean on others a bit more for support. Things like having someone take 4 1/2 hours out of their day to sit with me while I have an MRI or sit with me while I make a phone call to my doctor means a great deal and improves my quality of life. I am so grateful to have those individuals in my life as I know what it is like to be without. There is comfort in knowing that if I need someone, someone will be there. Talking about washroom habits is a very intimate topic along with experiencing any medical crisis. I think if it doesnt push others away - it will ultimately bring you closer together. I am very fortunate that it hasnt pushed a selective few away.
Crabby also mentioned her cats - I think thats a very valid point. I have a dog who is constantly dragging her leash over to me but when I am not well, she seems to know and doesnt do it. Instead she tried to comfort licking my face or just curling up beside me. There is no doubt in my mind that they know something is wrong. I use to take Keona to the hospital to visit sick individuals - adults and children. I saw for myself the stats go way up initally and then drop - even their physician asked when I would bring her back again as the children were more chatty afterwards or the adults more alert.
I like this question. Makes me focus on what I do have as opposed to what I do not. Thanks

 

[Guest555]

I am also new to this. The worse thing that affects my quality of life with chrohn's, is being practically incontinent for long periods of time.

 

[Christina]

Talk about it!

I just posted a similar quality of life question. I've had Crohn's for 4 years.

As far as relationships go - I have really grown much closer to my family and friends. I used to be the one who did all the supporting, but slowly I have been learning to let people help and comfort me. In the long run, it is a far nicer place to be in.

As far as the physical side of things - sucks! I mean it could be worse; I am not in pain much. But it's the incontinence that really gets me! I HATE it! But I still hope that I can figure something out to ease the problem. Maybe just talking about it here will help??

 

[Swirl]

It sucks badly right now for me. The part of not working due to having it, bored out my mind with not much to do because I have to stay home a lot right now. I really can't say it has done anything good for me. Maybe it will soon when it comes under control. Work harder and not waist money on crap.

 

[stargirl]

I'm new at this...started in March. So far my quality of life hasn't changed much. It was cruddy for a few weeks because I was in constant pain, eating was a nightmare. But now that the pain is gone and i'm only stuck with the constant poohs life is fine. My chron's isn't quite managed but I figure hey--i can eat all the cookies and junk i want and since i pooh all the time i don't gain weight. Trying to be positive about it. So i'm meeting with a surgeon and my gi doc...so i have to spend time each day taking meds and thinking about this junk. At least i'm skinny now and can eat junk food galore ;-) There are positives. It is scary and overwhelming and I can't wait to get into therapy but for now quality of life is fine. I have loved ones who took care of me and my kids while I was really sick and now I am ok...getting good leg muslces for running to the potty though. Good luck to all - hoping for pain free days!

 

[semicolon306]

I think it all depends on how bad your pain is and how bad the flair is. I know for me prior to the ileostomy I used to know where every rest room was and also took the same routes, JUST IN CASE. Always has supplies TP and cloths, again just in case. There was numerous times I would feel great and then one minute later in pain or unable not to stop going to the rest room.

It is hard for people who do not have these conditions to understand what we go through. In a relationship it is important to have a very open line of communication. I was open from the beginning with my wife, she knew all my medical and if see ran, which she should have - lol, then it was not worth me investing the time.

The only plus to this was my job they were very understanding and if I ever needed a rest room I had lights and sirens and YES it was an emergency, as well all know.

 

[Billie Selene]

:yfrown:Wonder what it would be like to have a family or friends.........

 

[dvdgrs]

It has been a definite challenge.

For the past two years, I have been considering the surgical resection of a 15 cm long stricture that is proximal to my ileocecal valve. I was first diagnosed with Crohn’s 20 years ago after being treated surgically for a peri-anal abscess. As far as I can remember, my stomach problems began at age 7 when I was treated with high doses of penicillin for Lyme Disease.

I was even scheduled for surgery at Stanford, but changed my mind a week before. I am really concerned about losing the ileocecal valve. It seems important. I would like to talk with more people who have had the surgery. I would like to know their state before and after the surgery. Mostly, I am concerned about diarrhea. Currently, I have a bout once a month, usually when I am stressed out and not eating well.

I am worried that if I have the valve removed, I will have much more frequent diarrhea. The trade-off is that now, I am kept awake by cramping several nights per month. I also wonder if I would have a lot more energy if I go ahead and get the surgery. The problem is that there is no going back from the decision to have surgery, unless surgeons begin doing valve reconstructions.

Has anyone else agonized over this decision like me?
I would like to hear from anyone who has had a resection or is considering one?

 

[co2]

You can't appreciate the good without the bad. I know that flaring sucks a lot, but when I'm not it's all the difference. I feel like there is more enjoyment of my life when I'm doing something fun and not flaring.

 

[Christina]

Hi all!

A brief cheery note: After a bout in hospital, the doctors told me I had to take my colon out or face the consequences down the road. I did not want to do it b/c as you read above, my symptoms were tolerable. But the fear of a "complication" and the promises of my doctors that my "quality of life" would be better after surgery finally convinced me.

It took me 6 mos to get there, but I finally decided to have a laparoscopic colectomy. (There was some serious crying and anguish - in my opinion, the worst thing I have had to go through since being diagnosed with Crohn's was making this decision.)

It took me 6 weeks of healing (mostly the stoma), but I am overwhelmed with joy at how much better I feel just overall - I didn't know how much the Crohn's was weighing me down each and every day, above and beyond inconveniences and pain. Yes, the stoma part is a nuisance, but I have gotten to the point where I am (almost) ok with it.

Everybody has a different experience, but there is hope that a procedure or medicine will be your "solution." You just have to hang on to get there. However, my experiences with Crohn's (ongoing) have still contributed positively to my character - who I am today. I would be glad not to have had to learn these lessons in this way, but given that it happened . . . make the best of a bad situation. That's my 2 cents.

In the end, taking out my colon improved my day-to-day quality of life. C-