pros/ cons what if....

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Regular Member

Date Joined Jun 2008
Total Posts : 67
   Posted 8/13/2008 2:12 PM (GMT -6)   
I'm reading ur comments and some of u seem to benefit from the surgery greatly, but alot of u seem not helped or worse off thn b4... i am 8 days away from a subtotal ileorectal anastomosis, i am completely full of poop literally, some of u talk about being still constipated aftr this procedure, still needing enemas and what not, confused This is not very inspiring because i hv 2 use an enema everyday just so i can eat, some of you talk about how you have alot of water retension (swelling ) after the surgery, I am already swollen from my head to my legs i seriously can't swell anymore, some of you talk about experiencing weight gain after this surgery... well despite the low calorie intake I am already at a high number (I can see if I ate too much Ok then I desrve the weight) but I barely can eat anything and if I gain anymore I will be considered overweight...Alot of you mention pain, I spend half of the time in crippling pain to the point i had to take med leave from wrk, some of you talk about developing food intolerances, When already before surgery I have quite a few, so all in all is this surgery worth it, i mean i don't see how i can get much worse but i know that no matter how bad i hv somebody has it 10 x worse. All I know is that I can't live in the current state I'm in. What's the point of completely going n2 debt more than i already am if theres a fair chance that this colectomy won't work, or make me worse... I am scared, terrified that everything that could go wrong will or that it will leave me still constipated, swollen, and full of poop( I'm so tired of looking 9 months pregnant and having nooo energy to live)  What am I supposed to do if it doesn't help me? Just slowly be poisioned to death by the toxic wastes(poop) in my colon already. Am I just supposed to say oh well and never poop again until I die, just live with it by doing enemas and swallowing a cabinet full of laxatives every freakin day? I really hope and pray that the surgery will help me, its all i got to hope on shakehead . What if theres complications and i die or end up with a bag or get infections or harm other organs. What if I keep swelling even more after surgery and become obese, what if I can't work and the bill collectors throw me in jail because i can't afford my medical bills... What if I'm making a mistake, but I can't go on so there's no turning back now. I guess i will just have to suck up fears and risk it. Maybe just maybe this could might just possibly work and i will get my life back. All I can do is pray and hope

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 8/13/2008 2:31 PM (GMT -6)   
Surgery is scary, especially when you don't know what the outcome will be. But having had an ileostomy for 8 weeks in between surgeries I can tell you it won't be the end of the world. As you said, you cannot live the way you are now. If you did end up with an ostomy you would be healthy and free of your current problem.

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Regular Member

Date Joined Jul 2008
Total Posts : 208
   Posted 8/13/2008 3:13 PM (GMT -6)   
hopestar!!!!!! everything you are feeling, i felt too!! you are not the first and won't be the last, and yes you have every right to feel like this. As from my emails to you, you know how bad things were for me before the op, i now go at least once a day, and my pain meds are starting to take effect and i have been sooo much better lately. As for the food intolerances i had none before surgery, now i do, but you have them now, most folk seem to have had their intolerances disapear!! i am now controlling what i eat and it helps, its not that hard. Comparing life to before the op, was hell, all my life not pooping properly being in awful pain and swelling, i wouldn't change having the op for any amount of money now. I have full confidence you will feel the same. Ive already come to the decsiion if i were to get a bag maybe it would be best, yeh stll scared but not so much. the people on this forum have had their lives turned around with a bag, so be like me, one way or another bag or no bag you will get to lead your life the way you deserve to. May just take some more time, but your future is looking so bright now. Good luck and we will all be waiting for the first posting once you are home. amanda xxx
extreme constipation from birth
fainting spells aged 15, then diagnosed I.B.S
anal fissures, haemorrhoids internal and external
mucous and bleeding
sigmoidoscopies, endoscpies, scans, x-rays, bloods
h-pylori aged 24-26
more tests, diagnosed severe slow transit, marker tests took 3-4 weeks to come away
large colon removed in 2007, aged 27( surgeon said removed 10ft) no colostomy
still in severe pain, awaiting dietician appt, now lots of food intoleraces
meds- ibuprofen, fluoxetine, amitriptyline,and omeprazole

Veteran Member

Date Joined Nov 2003
Total Posts : 518
   Posted 8/13/2008 3:15 PM (GMT -6)   
I think it would be a much scarier scenario for you Not to have the surgery. We all have our ostomies for different reasons (though many of us have Crohn's or colitis) but most of us still agree life is better after. We all worry about surgery, infection, etc. but you just need to focus on the fact that after surgery you will feel better. Easier said than done most days....Just stay positive and good luck!

Regular Member

Date Joined May 2008
Total Posts : 60
   Posted 8/13/2008 6:24 PM (GMT -6)   

Hi Hopestar,

It is normal to feel scared before s/x...but try to stay positive,and trust that which ever way it goes..w/ a bag or w/out,GOD is in controll.  I know that that can be hard to belive sometimes,we went through 11 years of tral and error w/ my daughter before we finally had tried everything,and had to go to a bag...but that gave my daughter a life,we are exactly 1 month since she got the bag,and she has never been happier!!  Yes we have some bumps in the road,but life is so much better than it was !! Yes it would have been great if her other s/x had worked,but they didn,t ,and we looked forword to the bag,but you should try everything,before giving up :-) !!Most people that have your problem,and have the s/x you are having it works...thats what the drs told us anyway. Try not to worry and think about "what if"...think of this as no matter what happends it is a step forword!!You will be in our prayers!!

Krista & Takera

Regular Member

Date Joined Jun 2008
Total Posts : 67
   Posted 8/14/2008 8:44 AM (GMT -6)   
Thankyou Sue, Amanda,Jen, Krista and Takera for your supportive replies, i will keep all of u in my prayers as well. Tommorow I hv preop testing i think its the annamonatry test or somethin they sound embarrassing, but oh well i just have 7 days till i am hopefully on the road to finally feel better from colonic inertia condition... I am doing very well with my eating disorder way of thinking now, 10 years was way too long to be a prisoner of ED (anorexia) I NEVVVVVVVVEEERRR EEEEVVVVVEEERRRR wanna go back, I wanna feel better be able to poop on my own and live and work as a productive member of society
take care - Heather Lynn

Veteran Member

Date Joined Mar 2008
Total Posts : 624
   Posted 8/15/2008 11:57 AM (GMT -6)   
Bless you hopestar - I understand where you are coming from to some extent... I am SURE all will be well with you.  I will watch for your posting as i also need something positive to hang onto. roll
all my thoughts....karen x
1997: Diagnosed IBS
2003: Pelvic floor repair surgery
2006: STARR surgery for mucosal prolapse/Obstructive Defaecation Syndrome.  Also diagnosed with slow transit
2007: No difference. Had MRI scan showing a partial volvulus 
2007: Therefore surgeon recommended a sigmoid resection which resulted in immediate colonic inertia
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once).  In discomfort/pain most days.
Scared to have TC as told I could become incontinent - but looking to have surgery before end of year hopefully

Regular Member

Date Joined Jun 2008
Total Posts : 67
   Posted 8/15/2008 12:50 PM (GMT -6)   
Thanku Karen i will keep u in my prayers and thoughts and bless u back.

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 8/15/2008 3:47 PM (GMT -6)   


Keep your chin up and keep a positive attitude going into the surgery and your recovery should go smoothly.  Just give your body time to heal and readjust to it's new plumbing.  I will be watching for your posts.  Best of Luck to you.

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

Regular Member

Date Joined Jun 2008
Total Posts : 67
   Posted 8/15/2008 4:37 PM (GMT -6)   
Thanks alot Peggy this is such a supportive forum, take care and be well.
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