Reoccurring UC at age 28 - Considering Surgery

I am a 28 year old female diagnosed with Ulcerative Colitis 4 years ago.  My 1st episode of UC was very severe.  I was hospitalized for 1 month (took 3 weeks and a hospital transfer to UNC Chapel Hill for the diagnosis).  Since then I have been hospitalized 3 additional times (averaging once a year, every year, around the same time).  I take Asocol and Remicade.  Even with this medication, I continue to have UC episodes (some more extreme than others).  I am not sure how to control this disease and I am considering the surgery.  My GI Dr was concerned with going through the surgery because of my age (too young).  Unfortunately I am anemic, often dehydrated, and tend to stress easily.  I try to watch my diet (eat mostly seafood and chicken) and try not to overwork.  

My symptoms for UC are as follows:  abdominal pain, fevers, headaches, rectal bleeding (sometimes with mucus), feeling weak and fatigue, distorted vision, feeling faint, sharp pains/spasms, constipation, and rapid weight gain (stomach and face swells).

I have taken many medications.  I have taken CYCLOSPORINE, ASOCOL, MSCOTIN, PREDNISONE, VICODIN, PEROCET, MORPHINE, FLAGYL, FENTYL, AMBIEN, etc.  I am immune to most pain medications.  I have to take high dosages of pain medication in order for it to take effect.  Because of the lack of comfort pain medications give me, I usual try to work through the discomfort and pain (don't want to absorb too much narcotics with my illness).  I have a severe reaction to most antibiotics (Cipro, Zithromax, etc).

Should I consider surgery? Can surgery cause more harm?  Is it possible to continue to have UC episodes AFTER surgery? Are there alternative medications?  Is there a pain medication strong enough to ease pain, without causing harm to my body?  What causes a relap?  How can I prevent a relaps? What is the difference from Ulcerative Colitis and Crohn's?

[Ratnakar ., MD]

Hi,
Ulcerative colotis involve the colon. Crohn's dieease can involve any part of the gastrointestinal tract. Both are inflammatory bowel diseases.

The treatment of UC depends on the extent of involvement of colon.(You have not mentioned about the extent of the disease).

If severe UC is not responding to medical treatment surgery should be concidered as an option. The type of surgery depends on the extent of the disease and the complication depends on the type of surgery done.

The risk factors of relapse are -
1.Aspirin and nonsteroidal anti-inflammatory drugs (NSAIDs)
2.Respiratory illness
3.Infection of the gut
4.Antibiotics
5.Oral contraceptives
6.Psychological stress
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The information provided is for patients’ education only and is not a medical advice. Always consult your personal physician for complete evaluation of your health problem.

- Ratnakar Kini M.D.

[lorib0213]

Yes, you should definately meet with surgeons and speak with people who have had the surgery.  I'm 42 and I too have had UC for 4 years and the only medication that keep my flare-up under control was prednisone.  It a gave me osteopenia, anxiety, depression, cataracts and high blood sugar.  So I have decided to get the surgery while I am not having a flare-up and am in pretty good condition.  Too many people put it off until they have to get emergency surgery and then have have serious complications.  Talk to these people and make an informed decision.  This is a major and life changing surgery, but it is a cure for UC and right now is my best option.  You are still young and will probably heal better at your age.  Sounds like you've tried every possible treatment.  UC is the inflammation of the colon, therefore if you remove it, the UC is cured.  Crohn's affects the whole digestive system, so removing the colon does not cure the disease.  Good Luck!

Lori

[Dallasfan]

One thing I noticed that you have not tried is 6-MP, a drug usually reserved for the treatment of leukemia. In low doses I cured me !!. I had about the same history as you except that I had a partial colectomy with colostomy. With the medication, I was able to have the colostomy reversed, and I have my life back. The 6-MP has no FDA approval for UC so you may have to convince your doctor to try it...Take care

[Naplis]

Hi.
For what it's worth, I had surgery for UC in 1980 at age 21. (total collectomy with ileanal-anastomosis). I am now married, had two children without any complications, and have a successful career and social life.  
I recently have grown concerned about the long term side effects of UC surgery. When I had the surgery, doctors were pretty confident that the colon only functioned to absorb water, and store waste.
We now understand the body on a microscopic level, which reveals the likelihood that there are other compromises to our physiology from losing the colon, other than watery, frequent stools. The body is a complicated network of electrical and chemical networks...that are ALL connected.
I would investigate what long term effects losing your colon might have on your brain chemistry.
The gut is loaded with serotonin receptors.  80-90% of the body's total serotonin cells are found there. (serotonin affects mood)
When I entered peri-menopause I experienced pretty dramatic mood swings and anxiety. I was never anxious or moody before age 45. I was prescribed Lexapro, which helped me dramatically. Lexapro is from a class of drugs called SSRI's. They modulate mood through serotonin manipulation.
The problem is that SSRI's are likely to affect the gut in most unpleasant ways...namely- diarrhea. Not just run-of-the-mill diarrhea either. I'm talking about rushing liquid that cannot be contained by any sphincter. The result is fecal incontinence. Most debilitating as you can imagine. This has me thinking a lot lately about my surgery 28 years ago. Do I have a serotonin deficiency because I lost my colon? What other ways has losing that organ affected my health?
Please be sure to ask your doctors about long term effects regarding serotonin, and bone health, before deciding what to do.  
In the short run, relax, if you choose surgery, your physical symptoms will definitely improve. I even wore a bikini in my 30's and 40's!
Best of luck.
naplis

[Charlie93]

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