Introducing myself

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Caro1014
New Member


Date Joined Sep 2007
Total Posts : 17
   Posted 1/1/2008 4:39 PM (GMT -6)   
Hello everyone,

I checked but didn't find a newbie introduction thread so here I am. I've been lurking for a while now and reading everyone's very informative posts and I must say I really like the supportive atmosphere on here. It's so nice. I'm 34 and live in Ireland and have had Crohn's disease since I was nineteen. I was doing fine until 2004 when I started having bouts of incontinence and my doctor was putting me on short doses of steroids as well as putting me on pentasa and increasing my imuran. But it didn't really settle it at all. It was very hard trying to keep going at work when my insides were churning and I was in mortal fear of accidents just letting the dog out to the garden. In 2005, I had to give up work, it just got too hard. I started having panic attacks going out the door, I wasn't doing any better and my doctor decided I was steroid dependent. So we decided to start Remicade and that took a while to kick in but it did after a few doses. Sadly it didn't last and I started sliding back again. I was feeling ill, couldn't go out, couldn't eat much and despite my saying this to my GI doctor, he was reluctant to put me back on steroids, wanting to get as much out of the remicade as we could. In March of this year, I ended up with terrible pains that kept me up all night. I thought at first it was trapped wind after eating too many Pringles late at night (never could resist the things!) but after it happened a few other times, I went back to my doctor. The pain starts in my lower right hand side and then moves to the front where it stays for hours. Nothing shifts it, everything I ate set it off and it got the point where half a bagel in the afternoon was all I could manage and I was thoroughly miserable. The doctor sent me for a colonoscopy before Easter and saw that my insides were very inflamed. My mother and I had a big "we told you so!" moment and the doctor said he was going to put me on steroids, starting me at 60mg and tapering down and if that didn't do it, then I'd have to have surgery. Well, long story short, while the steroids made me able to eat and do more than I had in a long while, once I came off them I was back to square one. So surgery it is. Thanks to the health system being in a bit of crisis here, I was waiting from June until December to talk to a surgeon and now I am going to have my colon and rectum removed. Hopefully I'll be admitted next Tuesday, providing there are no major queues in Accident and Emergency leading to elective surgeries being cancelled.
I admit I am scared and nervous about this but really I can't go on like this anymore. It's been nearly four years, I see people going about their business, taking holidays, having babies, getting promoted, going to the cinema and concerts, or even just going for walks where as I have to plan anything with almost military precision. And if I go shopping, I need someone with me who I can throw whatever I'm purchasing at while I run to the nearest toilets. I have little energy some days and even going to the supermarket to buy bread is beyond me some days. My mother and I take care of my 98 year old grandmother and as I'm sure you can appreciate, it's very hard to be sympathetic to the needs of someone else when you feel rotten yourself. I also think I've come to the end of the line coping wise. If the surgery wasn't coming up, I'm not sure how I'd manage. Because so often I've looked at myself and thought, is this it? Is this the best my life is going to be? I feel like I'm stuck being an observer of life, especially other peoples, instead of actively participating in my own.

Anyway, I just wanted to give a bit of background and while I've been reading the threads, if anyone has any advice they'd like to give me, I'd appreciate all and any. Good thoughts and prayers for next week are welcome too!

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 1/1/2008 5:42 PM (GMT -6)   
So sorry to see what you have been going through. Your completely normal to feel anxious about surgery, mine was an emergency surgery in August, so I didn't have time to think about it. The surgery isn't easy, I'm not going to lie, but you will recover and feel better once you have it. You will not have to be on the medicines and will be able to eat foods you couldn't before and go places without having to look for the nearest bathroom! The hardest thing for me was the ostomy itself, I hated to look at it or change the appliance, but you will get used to it too and maybe even appreciate it because you will have an improved life. Good luck to you and if you have any questions, don't hesitate to ask, there are a lot of caring people on this site that have been where you are and will have lots of advice. Keep us posted and let us know how you are doing.
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
J-pouch surgery to be scheduled in 08


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/1/2008 6:01 PM (GMT -6)   
Carol,
Welcome to Healing Well. I'm so sorry you've been having such pain and troubles from the Crohn's. sad I have been there and can relate to what you're going through. After 8 years of pain and sickness, I had my colon and rectum removed last year, and it has changed my life for the better in so many ways.

Once you are rid of your diseased colon and rectum and have healed from surgery, you will feel like a new person who has excellent health. You will be able to go out without having to worry about where the nearest bathroom is. You will have energy again and will not have to take any medicine anymore. It is going to give you your life back! :-)

I pray that your surgery goes really well. Please ask us an questions you may have and keep us posted on how you're doing.

Take care,
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.

Pain-free, med-free, and very thankful to be healthy again :)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/1/2008 6:06 PM (GMT -6)   

Welcome to HW.com...  I have walked in your shoes, tho many years ago.  I remember how awful the big "D" was and planning your life around the bathroom.  All the pain, all the meds, all the surgeries, all the everything that had to do with active disease.   That's not an issue for me any longer, and won't be for you either once you have the surgery.  As tbraz said, it is not an easy surgery but you will heal and once you have done so, hopefully you will be grateful for a second chance at life.  It is a life altering change.  You will have to get used to being able to eat again and do all those things that you haven't been able to do for sooooo long.  Yes, you will also have to adjust to having an ostomy and changing your appliance, but it becomes easier with every change.  Just remember, we are here for you --- ask any questions you may have.  I have found a great deal of help here and I believe you will too.  There are a lot of really compassionate people on this forum. 

Keep your chin up.  I will be thinking of you.  And keep in touch.


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 1/1/2008 6:34 PM (GMT -6)   
Dear Carol:

Welcome to the forum! I don't think I can add much more than the others have said except to say this forum has been a great source of inspiration and education for me and I am sure you will find it to be so for you. I know how "small" your world can get when you are sick, especially when you are so young. But have heart! Life will get better. Keep in touch and we will be praying for you here in New York.

Richard

"For in hope we are saved" Romans 8:24
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/1/2008 10:18 PM (GMT -6)   
Carol,

Im a new member as well and i cant tell you how helpful all of the members have been. I am sorry for what you are going through, and I to am facing an ileostomy. I am afraid and nervous as well. Especially about having to see and deal with the actual stoma. But these guys are so great, they make it seem like i'll be able to deal. I guess only time will tell, but like i've told them before, since i found this site i havent cried at the mention of surgery or the thought of this illness at all for that matter. You will be helped here, your spirits will be lifted. I'll be praying for you during your surgery
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


Caro1014
New Member


Date Joined Sep 2007
Total Posts : 17
   Posted 1/2/2008 8:06 AM (GMT -6)   
Thanks everyone. Last year I began to suspect that surgery would be in my future so I wasn't completely shocked when the doctor suggested it. Now as it gets closer, the nerves are starting. I knew it was a big surgery but thinking about something and actually have it happen are two different things! However, I just keep telling myself to focus on the big picture, which is being able to go out and about again and as I have a cousin who's getting married in July, I want to be able to go to that and enjoy myself without being afraid of ruining the dress I'm wearing or afraid that what I eat will end up going against me later on. I've also being going for regular cranial sacral therapy sessions for the past few years and I have found it so beneficial, especially at times when my mind was all over the place trying to cope. My last session was on Saturday and my therapist said that my body was in a good place, very calm and relaxed unlike last year when it would jump angrily at her for most of the session. And I've been taking regular Vitamin B complex and Arnica tablets to help with the healing process. So hopefully all that will play a part in steady healing after the surgery. I'm lucky because I have good support at home and my mother will be with me through it.

I know it's going to be hard but I'm making sure I focus on the positives and tell myself that we got through pain and discomfort before and we can do it again. And this time we'll have pain relief. Lots of it. I've had enough pain to last me a lifetime. Though I told my mother that anything I say under a pain relief induced haze is not legally binding, just in case I start telling her how I want to give away my DVD collection to my cousins or anything like that. The joke is that I have a extensive DVD collection and as an only child, my cousins are just waiting for me to be admitted so they can go through my stuff and help themselves. If that's the case, I reckon it'll be the quickest recovery ever! I'll be out of that bed and home the day after! :-)

Caro

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/2/2008 9:05 AM (GMT -6)   
Caro ~
I'm laughing so hard at what you wrote about your quick recovery!! tongue It sounds like you're in a good place mentally and are ready for some much-needed relief from Crohn's pain. The post-surgery pain will be alleviated by excellent I.V. medication in the hospital and pills when you get home. Once you have healed from surgery, you will be pain free!! :-)

I was out driving and grocery shopping two weeks after my proctocolectomy. I didn't have a lot of energy, but I was able to take a shower, get dressed, go shopping, and then go home and rest. Your strength will continue to build as each day passes.

I knew the day after my surgery that the Crohn's pain was gone. It was the most amazing feeling to know that it would not return, because there was no colon or rectum for it to return to! Mine was always contained to those two places, so I feel healed from this disease. After going to the bathroom 20+ times a day before surgery, I absolutely love not having the urge to go anymore!

My husband is jealous and wishes he had an ostomy, too! The other day we were at the beach, and they were remodeling the bathrooms, so they had port-a-potties up for people to use. They are so stinky, that I said, "I'm not going to use one of those... I'm just going to go in my bag!!" He replied with a chuckle, "Oh, you ostomy people just think you're soooo special, don't you?!" And, I replied, "Yes, we are!" :-)

Caro1014
New Member


Date Joined Sep 2007
Total Posts : 17
   Posted 1/2/2008 1:14 PM (GMT -6)   
flchurchlady,

I'm glad to be able to say I have managed to hold onto my sense of humour. It wasn't easy but I decided I wasn't going to lose my "spirit" so to speak. I didn't want to become bitter and twisted from all that was happening, and that wasn't happening, to me when I finally got back out in the world.
I think the big thing that's bothering me right now is the waking up and being in pain. Not that I'm too bothered about pain in my abdomen. I suppose years of period pains and crohns pains, often at the same time, have taught me coping techniques. But the pain where they take out the rectum is making me a bit anxious because of the times I had fistulas and the not being able to sit or lie comfortable. Not to mention the gymnastics that were required trying to get out of bed without setting them off. Ah, fun times.

BTW, love that conversation between you and your husband! Heh!

Caro

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/2/2008 2:04 PM (GMT -6)   
Caro ~
I know this is going to sound unbelievable, and I promise that I wouldn't make this up, but it really doesn't hurt to lose your rectum. I thought it would be extremely painful, too, but it wasn't.

The 8 inch incision in my abdomen, where they removed my colon, hurt a lot more, because we use our stomach muscles so often to sit up in bed and such. I would recommend having a small pillow with you in the hospital to hold against your stomach when you need to get in and out of bed. They gave me one after my surgery, and it really helped.

Keep up the positive attitude, because life after surgery is only going to get better and better!

:-) Cecilia

sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 1/2/2008 3:36 PM (GMT -6)   
Hi Caro!

Welcome to the boards! This place will become invaluable to you, I promise. The people are so helpful, I don't know where I would be without them. Make sure to ask lots of questions - there are NO dumb questions, and we've all be through it. Life is good with an Ostomy!
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/2/2008 5:16 PM (GMT -6)   
welcome carol! i hope you get lots of help here, i have, it's a great place.
I had surgery in April for UC, after 8 years of it, and like everyone else, its so great!
Don't worry about the rectum part, it's more itchy than anything. Just don't try to sit on any hard chairs for awhile, lol. And if you go in the car, be careful over railroad tracks, lol. you can also think of it this way, the surgery pain is temporary it will go away, but the pain you have now is never going to go away, that's how i looked at it.
Cecilia is right you can tell almost immediately that you are cured, i woke up feeling clean, that's the only way i can describe it. And that lovely morphine helps lot!
maybe you should lock up your dvds before you go in!
good luck and i will be thinking of you

Caro1014
New Member


Date Joined Sep 2007
Total Posts : 17
   Posted 1/2/2008 5:31 PM (GMT -6)   
Actually, my mother's uncle, Frank, who ended up in a nursing home and because he was blind, would have all his possessions, which were few and far between at that stage of his life, in a pillow case in the bed with him. So one of my cousins suggested I do an 'Uncle Frank' and put all the DVD's in the bed with me. I'm sure that would be most comfortable! :-)

This evening actually, I was talking to a woman on the phone who had the same surgery as me and had the same surgeon four years ago and she said it completely turned her life around. It was really good to talk to her and she told me that the surgeon is considered to be the rest colorectal surgeon outside of Dublin. I'm in Galway so that's very reassuring. I knew he was good but not that good. She also said that he is one of the few surgeons who, when he takes out the rectum, stitches it from the inside so as it heals, it lifts up and although there is no rectum there, there is still an cosmetic opening. I hope I'm explaining that right. She said that at first, she thought her stitches had fallen out or something until it was explained to her. So she'd have to explain to any doctors about to take her temperature rectally, that the rectum isn't there even though they might think at first glance that it was.

So while I'm going to try and be prepared for anything, I'm not going to obsess over the pain but just go with the flow and stay positive.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/2/2008 8:25 PM (GMT -6)   
Carol,

You sound like you are already in the process of recuperating by being so prepared and ready to have the surgery and be rid of the pain once and for all. I love the positive attitude and the great sense of humour! We are a caring bunch, but as you will see, we can joke around a bit too! Welcome,

ps I am so glad you got to speak with someone who had experience with the surgeon who is going to do your operation. That's got to be comforting to hear such good things.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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