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sherridale
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/18/2008 5:44 PM (GMT -6)   
Hello everybody, this is the first time i've used a forum for anything, and i was surprised and pleased to find that there are quite a few IBD forums out there. I've had UC for 13 years, it was quite controllable until 4 years ago when the disease spread throughout the whole bowel. Since then i've had constant problems trying to control it, i've tried azathioprine (it didn't work and my hair fell out), mercaptopurine (no joy), cyclosporin (worked at first, then stopped working) and i'm now due to have my second infliximab treatment - the first worked really well, i felt better within a day, but it only lasted 4 weeks, and the treatments are only meant to be given every 8 weeks. I am more or less always on prednisolone, and i was diagnosed with addison's disease 2 years ago because my adrenal glands gave up due to the amount of steroids i've had over the years. I've also had anaemia for the past couple of years and have needed about 10 blood transfusions (i go into hospital about 3 times a year). I was admitted again in June, my blood count was 54 and they found 3 blood clots aswell - 1 in my abdomen and 2 in my lung, so i now have to give myself blood thinning injections every day. My consultant has said that surgery is the only way forward now, and although i agree with him i can't seem to get my head round it at all. I've told my doctor that i am prepared to have surgery, and he said he is going to speak to the surgeon this week about it, but I really don't think i can go through with it. Despite the whole stoma thing, my personal circumstances are also totally wrong - i'm 37 and live alone, and i don't work due to my health. I've just moved house, but because i've been so ill i haven't been able to unpack so my flat is a complete mess. I don't have any kind of social life anymore, all my old friends have moved away or are settled down with families. If i do get an opportunity to go out i am usually too ill to go, or I feel too self-conscious as the steroids have affected my appearance so much that people don't recognise me anymore. The reason i'm joining this forum is to see if anyone has been through or is going through anything similar and would like to share their experiences. I'd also like to hear from anyone who feels that their social life has suffered as a result of their health problems - i am thinking of starting up a local group for people with physical illnesses or disabilities but it's just a thought at the moment until i'm a bit more settled. Thanks for reading this, please feel free to respond, it would mean a lot!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/18/2008 8:00 PM (GMT -6)   
my social life was wrecked when i had UC. I got sick when i was 21, it wasn't too bad at first, but before i got sick, i was out with friends all the time, i was working full time, always seeing my friends kids and exercising stuff like that.
Then when i was 23 i had my first actual flare, and after that i had to quit work, went on the steroids, gained like a thousand pounds, my face even changed shape. I was too sick to go anywhere, couldn't keep the house clean, couldn't do anythng. Even after i had my son, i was too sick to play with him. It was awful!

Anyway, in august of 2006, i decided i had had enough i wanted this blasted colon OUT! Dr talked me into remicade, stupidest thing i ever did! wasted months on that stupid stuff, lol.
Then April 17 2007, i had surgery, and now i am BETTER!!!!
I know that you are scared of surgery, and i totally understand that, it's a scary thing. But you will get your life back. I promise it is so much better!

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/18/2008 8:24 PM (GMT -6)   
summerstorm said...
my social life was wrecked when i had UC. I got sick when i was 21, it wasn't too bad at first, but before i got sick, i was out with friends all the time, i was working full time, always seeing my friends kids and exercising stuff like that.
Then when i was 23 i had my first actual flare, and after that i had to quit work, went on the steroids, gained like a thousand pounds, my face even changed shape. I was too sick to go anywhere, couldn't keep the house clean, couldn't do anythng. Even after i had my son, i was too sick to play with him. It was awful!

Anyway, in august of 2006, i decided i had had enough i wanted this blasted colon OUT! Dr talked me into remicade, stupidest thing i ever did! wasted months on that stupid stuff, lol.
Then April 17 2007, i had surgery, and now i am BETTER!!!!
I know that you are scared of surgery, and i totally understand that, it's a scary thing. But you will get your life back. I promise it is so much better!

 

It must be great to actually say "I  had UC" vs I have UC!

I love heaing these post surgery success stories! We as UC'ers are truly blessed to even have this as an option!
 
How long did it take following your surgery to get back on with a normal life?



Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!

Post Edited (bbc) : 9/18/2008 7:33:15 PM (GMT-6)


Socalsd
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 9/18/2008 9:01 PM (GMT -6)   
Thanks for sharing your story for those of us facing the decision.
Prednisone 40mg a day
Clotrimazole Troche (keeps the thrush away from the Pred.)
just started Remicaid hope it works

Just back from 19 days in hospital with 2 blood transfusions for Anemia


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/18/2008 10:19 PM (GMT -6)   
it is absolutely wonderful to say i HAD uc, lol. There are little things, everyday, that happen that make me so glad i had surgery. Yesterday, i went to pick muscadines and scupperdines, and then i sat here and ate a whole ton of them, without being sick! something so small is such a huge thing for me, lol.
I had surgery in april of 2007, in july of 2007 i was at the beach with my family. It takes a while to get your engery back, and it takes a while for the surgery pain to go away, i was off the pain pills two days after i got hom from the hosptial, so that was 9 days after surgery. It was probably 5 months before all the pain went away, well let me rephrase that, there was this weird tenderness feeling along my scar, it didn't hurt really, just felt really weird. Once i got my energy back up from the surgery, probably about three weeks, i started doing more, then by the time my son started preschool, which was in august, i was at the gym four times a week, we were swimming, we were doing all the things "normal" people do!
And yes, if you are wondering you CAN swim, you can actual spend 6 and half hours straight in a pool with no problems, however if you like your skin, i don't reccomend that, lol.
Noone can tell, and you won't smell bad! it is kind of gross at first, but you get it over it fast.
When i woke up from surgery, i felt clean, i knew it was gone, that the evil evil sickness was GONE!
anyway, i went off on a tangent, lol.
Back to what you were asking about a normal life, it probably took me about two months to get myself back to "normal" you have to stay on a low residue diet, which basically means no stringy stuff, for 6 weeks, and you have to be careful about lifting and things for the first 6 weeks, and then it will take you a few weeks after that to get yourself back together, and it took me a few months to get the hang of doing the bag right and all that. I would say that my life is def back to normal now, back to what it was before i got sick! Now i have a kid and a husband, so things revolve more around them, but i go out with my friends on friday, thats a no kids night, lol, and stay out all night, and then during the week, my friends and their kids and my son do things together, lots of, i suppose you would say, play dates.
anyway, i love to talk (can you tell) so if you want to ask me anything else, i will tell you!

TNCrystal
New Member


Date Joined Feb 2006
Total Posts : 15
   Posted 9/18/2008 10:38 PM (GMT -6)   
I am with you summerstorm - it is nice to say I HAD UC! We had surgeries around the same time. (my first one was March 2, 2007) It took me a while after that first one. I had some complications (blood clot, stoma & skin problems, staph, dehydration, you name it. I was in the hospital for 1 month and was out of work for two months. I am fortunate to have a flexible job where I could take it easy when I came back to work. I had a PICC line and had to have IVs at home for two months after surgery as well. It was rough needless to say but in the end it was so worth it. After my takedown surgery in April of this year I felt great. That surgery was nothing compared to the first and that is when I could finally see that all the pain was worth it. This year I finally went to the beach and Disney World and I can finally enjoy life now that I am not constantly thinking about have an accident. sdj - It is totally normal to feel scared about having to have surgery but it sure helped me to talk to others who have had it. They assured me that life was better once you recovered and that helped me get through it. If this is the route you go, I will be happy to give you support.

Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 9/18/2008 10:44 PM (GMT -6)   

If you are a half empty type of person then you will find there is 1 negative about this site. People post stuff so quickly and in such volumes that it is hard to keep up. If you are the other sort then you will find it a posative!

There is another surgery post on a previous page which you might find of interest if you haven't read it already. http://www.healingwell.com/community/default.aspx?f=38&m=1233724

Sorry to hear that life has been so hard on you lately. At 37 you are still very young and have more than enough time to have a real life. The decision to have surgery is probably one of the hardest you will ever make and does take a while to get your head around. The CR surgeon who will do my operation gave me a list of past patients who i can ring. Maybe your's might give you some contacts as well.

I am lucky in that my BMs are fairly predictable during the day but go feral at night. So i can go to work but would be too stressed looking for toilets to have a social life. The other reason I am going for the op is that my time with my children is running out as they are fast growing up and i don't want to lose any more of that part of my life.

Hope things work out for you.

 

 


Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g, prednisolone 15mg
tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept


sherridale
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/19/2008 12:17 AM (GMT -6)   
wow, thanks for all your replies, it means a lot to know there are other's out there who understand. I'm having my 2nd infliximab infusion tomorrow so i'll hopefully have a few weeks of respite from the uc and the steroids. I will keep you informed, as i'll be visiting here regularly now as you'e all so nice!! Thanks again, Sherri

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/19/2008 10:21 AM (GMT -6)   
summerstorm said...
it is absolutely wonderful to say i HAD uc, lol. There are little things, everyday, that happen that make me so glad i had surgery. Yesterday, i went to pick muscadines and scupperdines, and then i sat here and ate a whole ton of them, without being sick! something so small is such a huge thing for me, lol.
I had surgery in april of 2007, in july of 2007 i was at the beach with my family. It takes a while to get your engery back, and it takes a while for the surgery pain to go away, i was off the pain pills two days after i got hom from the hosptial, so that was 9 days after surgery. It was probably 5 months before all the pain went away, well let me rephrase that, there was this weird tenderness feeling along my scar, it didn't hurt really, just felt really weird. Once i got my energy back up from the surgery, probably about three weeks, i started doing more, then by the time my son started preschool, which was in august, i was at the gym four times a week, we were swimming, we were doing all the things "normal" people do!
And yes, if you are wondering you CAN swim, you can actual spend 6 and half hours straight in a pool with no problems, however if you like your skin, i don't reccomend that, lol.
Noone can tell, and you won't smell bad! it is kind of gross at first, but you get it over it fast.
When i woke up from surgery, i felt clean, i knew it was gone, that the evil evil sickness was GONE!
anyway, i went off on a tangent, lol.
Back to what you were asking about a normal life, it probably took me about two months to get myself back to "normal" you have to stay on a low residue diet, which basically means no stringy stuff, for 6 weeks, and you have to be careful about lifting and things for the first 6 weeks, and then it will take you a few weeks after that to get yourself back together, and it took me a few months to get the hang of doing the bag right and all that. I would say that my life is def back to normal now, back to what it was before i got sick! Now i have a kid and a husband, so things revolve more around them, but i go out with my friends on friday, thats a no kids night, lol, and stay out all night, and then during the week, my friends and their kids and my son do things together, lots of, i suppose you would say, play dates.
anyway, i love to talk (can you tell) so if you want to ask me anything else, i will tell you!
Thanks for the great info...how did you go to the beach/swim, gym etc with the bag?
 

Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


TNCrystal
New Member


Date Joined Feb 2006
Total Posts : 15
   Posted 9/19/2008 3:01 PM (GMT -6)   
Swimming wasn't a problem for me. I got one of those tankini with the little skirt bottom. You could not tell I had a bag underneath it, it was great.
Living UC free!
 
J-pouch surgery Mar'07 & Apr'08
Diagnosed with UC in 2002
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/19/2008 5:11 PM (GMT -6)   
TNCCrystal,

Did you have to have 2 jpouch surgeries (Mar 07 and April 08) or was the first the removal of your colon?

On a scale of 1-10 with 10 being a completely normal life how would you rate yours right now?

Thanks
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


Shaz032
Veteran Member


Date Joined Feb 2003
Total Posts : 1251
   Posted 9/20/2008 3:50 AM (GMT -6)   
I have an ileostomy and I'd say on a scale of 1 - 10, I'd be 9.5. That 0.5 is because I poop differently to 'bowel intact' people but it's not better or worse than pooping via rectum and anus, just different. Regarding everything else, I live a perfectly 'normal' life and can do anything a 'bowel intact' person can do :)
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/20/2008 12:45 PM (GMT -6)   
going to the gym isn't any diff than before, i just don't wear spandex pants, but i wouldnt' wear those anyway! at first, you have to be careful with stomach exercises, but it's not really a big deal now. I do all the regular weights.

For swimming, i got one of those tankinis with the skirt bottom like TNCrystal is talking about. And when i go out, i tape the bag up on itself and then pin the top of my suit to the bottom, which actually had i thought about it, i would have been doing for years, lol.
There are some pics on a photobucket page, of some of us with bags, so you can see that you can't tell they are there!

the user name is
crohnsdisease
password-6mp3asa
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