I don't know where to turn

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jessicapeanut
Regular Member


Date Joined Mar 2007
Total Posts : 21
   Posted 3/13/2007 4:33 PM (GMT -7)   
I don't do in person groups. Did a lot as a young adult. I am getting a stoma on April 25ht and reconstruction to my crotch due to Crohn's and fistulas. Scared to death and have no idea what I am headed for or the problems that may occur. I am almost unable to control which has driven me to this point. Just needed to say it because I haven't and just curious if anybody can give me insight into what I am going to encounter. I haven't ever posted in a forum before but it feels safe.

Thanks

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 3/13/2007 5:43 PM (GMT -7)   
tongue tongue

Hi Jessica!

I have never tried the in-person support groups either. They are few and far-between anyway, even in a city like Los Angeles (actually I live a little north of the city).

Anyway, I have been looking on these message board sites for years, and someitme shtey help. Lately, they have helped a lot since I too, am having surgery this April.

I have had Crohn's disease since I was 15 (now 29) and never had surgery yet. Now I am to get a temp. ileostomy with setons (samll rubber band-like things) placed in the tract of several peri-anal fistulas, plus a possible repair to a entero-vesicular fistula (that is a fistula that leads to the bladder or ureter).

I have lived with the fistulas for many, many, years. I find them the hardest part of Crohn's to deal with. First, it is difficult or impossible to talk to others about it (seems so gross and embarrasing) and secondly, they cause so much pain and are just plain annoying over time.

Anyway, I am glad you have decided to get surgery, since it sounds like you may past due, like me. Let's stay in touch so we have someone to go through this together?

Thanks,

Nat

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 3/23/2007 5:53 PM (GMT -7)   
I have just recently had a temporary ileostomy due to my crohn's. I have had it for 20 years since I was 8. I went into the hospital with fevers and headaches and yes my belly hurt but i have been flaring since August so I thought nothing of it. They did a CT scan which showed my ileum was perforaating and air was filling between my layers of tissue. The next day Feb 12 they had me have an intestine resection, they located a fistula removed that and since in the area they took my appendix as well. I was doing well but not putting out enough stool even with enemas. I have had more constipation issues than diarrhea with my CD. I started up with fevers again soon after the 1st surgery so on the 19th of feb. I yet again went into surgery. This time they drained 500cc of an abscess as well as taking 1/3 of my large intestine making me have a temporary ileostomy. Since I went into the hospital very ill I had more complications than most especially going in healthy. After all that my wound got infected so I have a wound vac, I had about 9 ct scans while in the hospital they drained another abscess while I was sedated in a ct scan. I got discharged march 6th in the early evening only to go back in the next day and be readmitted. I was discharged on the 15th and still run low grade fevers and on lots of meds.
Dx with Crohn's 1987, symptoms as early as 1984.
Temporary iliostomy February 19 2007
Ovarian cysts dx 1994, migraines dx 1996, allergies (including food allergies) , oral allergy syndrome (sligtly different than true food allergies), Astham dx 1984, Gall Bladder removed 1999, Inguenal hernia Sx 1987
 
Protonix 40 mg, Nuerontin, oxycontin, dilauded, Folic acid 1 mg, Vitamin b12 1000 mcg, vitamin b6 100mg, Diflucan 100mg, vitamin A, Multivitamin, Elavil 100 mg, Zanaflex 4 mg, asmanex, singulair, foltix, probiotics
As needed: Albuterol inhaler, relpax, nebulizer (albuterol ), have an Epi-pen but hope I never have to use one.


chip
New Member


Date Joined Mar 2005
Total Posts : 19
   Posted 3/27/2007 7:25 AM (GMT -7)   
hi there i was terrified of having a stoma but it was more psychological than for any other reason. The reality of a stoma for me is FAB. Not running to the bathroom or having incontinent accidents or sore rear problem and after surgery other folks still running to the loo made me feel SOOOOO greatful post surgery i wasn't in the same boat. it does take a while to get used to and finding comfy cloths the first few weeks is hard work but if you try and keep a positive attitude and share your feelings it will make it easier for you
hugs
chip girl x

jessicapeanut
Regular Member


Date Joined Mar 2007
Total Posts : 21
   Posted 5/28/2007 5:43 PM (GMT -7)   
Sorry for taking so long to get back. Thank you for your replies. I had the surgery and yes it is great not having the pain and running to the bathroom. But I am really depressed with this growth on my side. I can't hardly eat because I feel it coming out of me and emptying the bag is gross. Not sure how long this is going to last. I want to be one of those people who hit it head on and breeze through it. Not happening and really down about it. I go back to work im 3 weeks. I'm scared. Any advance on adapting to this thing? sad

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 5/29/2007 7:59 AM (GMT -7)   
Just know that it is normal. I went through the same things, hated the stoma, hated the thought of changing it, hated everything about it, and that my life revolved around it.

Some people adjust faster than others, and some need more time. You may want to talk to your doctor about it, maybe get a referral to a therapist that deals with this, and yes there are therapists that deal with this.

If you live somewhere where you can't find one, all you can do is wait it out, and try to help yourself. My best advice is to start getting out and doing things. Go to the local park and take a walk. Go take a horse back riding lesson. Go shopping. Do all the things you weren't able to do before the surgery because you were tied to your bathroom or were in too much pain. It will all start getting easier. It will finally dawn on you that this may be worth it.

Another thing, people will not know you have one unless you tell them. I worked with people for years who never knew. The noises start to get less and less, if you feel a "burp" just put your hand over it to muffle it, but you'll soon realize that no one else notices, and that you hardly make noises anymore. Make sure you have a good supply of M9 drops and go out into the world and be a part of it.

It will get easier, it will become a normal part of your life, just another thing to do in your personal hygiene routine.

If you need to talk to someone, I'm here, lots of people are here. You can e mail me privately also.

Good luck, don't be too hard on yourself, but make yourself get out into the world.
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade, now on antibiotics and prednisone, currently awaiting liver biopsy to see where we go from here.
 
 


jessicapeanut
Regular Member


Date Joined Mar 2007
Total Posts : 21
   Posted 5/30/2007 2:46 AM (GMT -7)   
Dear Judt
Thanks for the advice. What are M9 drops are where do I get them? I don't know how to contct you privately as I have never posted on a website before. Would love to speak to you.

I want to be the person that this doesn't bother but I have to say I an a little down. They also had to reconstruct my crotch from all the fistulas and that has been an adjustment.

Thanks
Jessica. redface

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 5/30/2007 7:37 AM (GMT -7)   
You can hit the envelope under my name to the left of my post, that will get you to my email.

M9 are drops you can buy, made by Hollister, that you put into your pouch each time you emty it, and there's no odor. You can go anywhere and no one will know.
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade, now on antibiotics and prednisone, currently awaiting liver biopsy to see where we go from here.
 
 

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