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christianbcmom
Regular Member


Date Joined Apr 2009
Total Posts : 69
   Posted 5/26/2009 10:13 PM (GMT -6)   
Hi everyone, as many of you know, my husband and I both have UC. However, my husband, who was diagnosed approx. 2 years ago, isn't responding to medication anymore and now we're heading to the Mayo Clinic for a 2nd opinion before surgery. I was wondering if any of you could give any insight to any of this as we are both a little scared and nervous. My husband and I are both 26 years old, and he's about to have his colon removed. Our gastro has recommended surgery as my husband's colon is severly diseased throughout, but gave us a referral to the Mayo Clinic so we could have access to some of the best physicians around. My husband did Remicade for about 2 months, but became immune to it. Then after that they tried him on Humira, but come to find out I'm severly allergic to it, (use your imaginiation) plus it wasn't relieving any of his symptoms, so now here we are. He's been on everything out there, well atleast what we know about here in Great Falls, MT. We both have referrals to the Mayo, him for his colon, and mine for urticarial vasculitis which was caused by the Humira, so I'm just a little nervous. I'm nervous that my husband is young and is about to have major surgery. We have two children, a 3 year old and a 1 year old, so I'm praying if and when he does have surgery everything will work out for the best and he'll be fine. So any assistance or support/info would be greatly appreciative. If he has his colon removed will he have a bag forever?, I know there are a lot of new procedures available, but I'm not educated on many of them. Is the J-pouch for people who have their whole colon removed? How long are you out of commission for? Does life return to normal? Is the bag hard to deal with? Can you still have a sex life? Is it easy to return to work and adjust? Just curious about all of these things. I love my husband with all my heart, I just need to know he'll be fine after he has this surgery. No more pain I hope and pray! Any stories would help. Thank you all!!!!
Alaina - age 26
Vitiligo
Hyperthyroidism
Ulcerative Colitis-- Diagnosed when I was 16. (It has it's ups and downs)
Urticarial Vasculitis (my newest endeavor)
 
 
Current Meds:
Xyzal (5 mg every 12 hours), Atarax (every 6 hours), Pepcid (every 12 hours), Doxepin (50mg at bed time), Levothyroxine (.50 mg), and Ativan if needed, but I haven't really used it. I also have been loving Aveeno Oatmeal bath, and their calimine lotion when all else fails!
 
 
 
 


Roliie
Regular Member


Date Joined May 2009
Total Posts : 33
   Posted 5/26/2009 11:10 PM (GMT -6)   
my husband had emergency surgery after being ill for about 6 weeks and in the hospital for a week. It was a big shock to have his colon removed and an ileostomy but it saved his life. He had a short period of time like a few days on Imuran and about amonth on asaol and pred and his bowel still perforated. Long story short and 7 months later we are still dealing with complications from the perf. As far as your questions re having a normal life with a bag ...yes there are adjustments like getting up through the nite and finding a restroom when you are out during the day. Puting the thing one is a bit of a trial but other than that people deal with far worse. Sex is fine, you can buy a fabric belt that supports everything and you are good to go. Have your husband speak to the surgeon about the location of the stoma, we didnt have that opportunity and it makes normal clothing a bit troublesome. Frankly though I would rather this that the side affects of the drugs I hear described. It is a change but life goes on. For us the j pouch is an option but with so much time already spent in hospital he isnot sure about another procedure. You are much younger than we are so choices may be differnent for you. The pouch though comes with adjustments as well.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5409
   Posted 5/27/2009 8:10 AM (GMT -6)   
I had jpouch surgery 8 years ago. I have never regretted it, it gave me my life back. The Mayo is an excellent hospital and your husband will be in good hands. Surgery is hard but your husband will be IMMEDIATELY relieved of the disease after the colon and rectum are gone and will make his recovery easier. If he opts for a jpouch his surgery will be done in 2-3 steps depending upon how ill he is. It's designed that way so that he can regain his health and make the other steps of surgery easier. I encourage you both to visit www.j-pouch.org for more information. Lots of people there who have gone to the Mayo. Your husband is not that young for surgery, many UCers have had surgery in their adolescent and teens. Just think of all the years he will have being med free and healthy! In my situation I went back to work after 3 weeks but I was not as ill as your husband. Expect 6 weeks as an average. No problems with sex either.

Sue
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


christianbcmom
Regular Member


Date Joined Apr 2009
Total Posts : 69
   Posted 5/29/2009 8:44 PM (GMT -6)   
Awesome, thank you both for replying!! I will definitely check out that website you mentioned. I'm a little nervous, but I'm praying that the Lord will bring him through just fine! Plus, we won't have to deal with his side effects from meds or no more pain for him hopefully, Lord willing. Thank you again!!!
Alaina - age 26
Vitiligo
Hyperthyroidism
Ulcerative Colitis-- Diagnosed when I was 16. (It has it's ups and downs)
Urticarial Vasculitis..or whatever it is... (my newest endeavor)
 
 
Current Meds:
Levothyroxine (.50 mg), Xyzal (5 mg every 12 hours), Pepcid (every 12 hours).  I also have been loving Aveeno Oatmeal bath, and their calimine lotion when all else fails!
 
 
 
 

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