ulcerative colitis to colon removal, now Crohn's Disease

My 39 year old daughter struggled with ulcerative colitis from the age of 27 to 32, when it could no longer be managed by drugs.  At 32 she had her large intestine removed.  She had the pouch surgery (three surgeries, 2-3 months apart) and has had to be on antibiotics for more than 4 years for pouchitis.  She recently suffered from a partial blockage and her doctor discovered during a CT scan that the inflammation has travelled into the small intestine (12 inches).  The doctor wants to put her on Humira.  Presently, she is having no symptoms.  After reading the posts from others who are on this drug, it seems that she could wind up feeling worse than she is now.  Are there other treatments that anyone would recommend to decrease the inflammation, without going directly to such a seemingly strong and potentially problem-producing drug.  She is a wife and mom of two young children who often bring home colds and sore throats, etc. and the immuno-suppressant nature of the drug is very worrisome.  She is too frightened to go onto one of these community websites, but I would like to be able to give her questions for her to present to her physician.  Any info would be appreciated. Thanks !!!

[Megadodger]

Hey!

I would be interested in hearing from her about her surgeries. I'm only 18 and last year my doctors told me that I would have to have my colon removed and would post likely end up with a pouch outside my body. This idea frightens me.
I've been on everything from asacol to prednisone, remicade, humira(currently still on it) and nothing seems to help.

The Humira does help with the inflammation though. My inflammation markers were at 12 a few months ago before I went on the Humira and are now down to 2. I understand that going on this type of drug is horrible for the body, but what if it helps? What if it keeps her around longer and she can take care of her family? If it doesn't work for her they can always take her off of it right?

Another point you brought up was that the idea of a weakened immune system worries you. Well, I still live a normal life; I go out, I see friends who are often sick, my mom's boyfriend whom we live with is a paramedic and pretty much comes in contact with everything, and I usually walk around the hospital when I'm waiting to see my doctor. I'm not a clean freak, sometimes i forget to wash my hands, sometimes I will hold hands with my little cousins who will have colds, and recently I went out with my older cousin for my 18th and she had strep. I haven't caught anything! I did happen to catch mono from my ex because he didn't tell me, but I have been on immuno-suppresents since I was about 14 and I haven't had a real bad cold or flu since before then.
Plus, if she stays in contact with her doctor she/she may take her off the immuno-suppresents he/she could possibly take her off of them for a few weeks until she is feeling better. It *****, I was in remission and they took me off my immuno-suppressents because of the mono, and now I am more problems then ever. BUT! There's always ways around these medications to keep yourself health.

I hope this helps a but.

[Periella413]

Dear Megadodger,
Thank you for your lengthy and thoughtful response.  I am so sorry that you have ulcerative colitis that is difficult to manage.  My daughter was also on EVERYTHING, but nothing helped.  She had her first mega dose of Humira yesterday and, right now, she is feeling fine.  I am going to tell her that you would like to speak to her about the colectomy surgeries.  She and her family are preparing to go to Florida on Thursday where our whole family is going to celebrate my mother-in-law's 90th birthday.  She will be home around March 11th.  I am sure she will be happy to speak to you about her experience.  I hope the Humira continues to help you and reduce the inflammation.  Ulcerative colitis is one horrible disease.  My thoughts and prayers are with you.  Be well.

[lizziecee]

Hi - sorry to hear of your daughter's IBD problems. I have had PanCrohn's Colitis for some 42 yrs and had my first resection (a right hemi-colectomy) 2 yrs ago, having more or less kept the disease under control by various medications., including 25 yrs of prednisone, which has caused havoc with my bones resulting in osteo-arthritis of both hands, hips and feet.

I haven't, yet!!, had Humira, but have had some 12 yrs on the immuno-suppressant methotrextate, which is used in the treatment for breast cancer - but it din't stop me getting bc, and currently on weekly self administered 25 mg injections, since I switched from 2 yrs of Infliximab. I stopped the infliximab because of severe inexplicable weight gain and have now got my weight back to normal at 120 lbs - I am only 5' 2".

Over the years I think I have tried most drugs to keep the disease in remission and now find methotrexate has the least side effects which are tolerable.  

I hope your daughter can find relief from her symptoms with the help of her gastroenterologist.

Take care,
Liz.