I know I've seen some posts before related to this topic where people have experienced rectal spasms with the urge to have a bowel movement, BUT I want to share with you all as to what I'm going through in hopes that someone can give me some additional insight.

I had step 1 of 3 on Feb. 19th, 2008 (step 2 scheduled for June 3rd). Had an uneventful post op until approximately 2 weeks ago where the amount of mucous and blood increased as did the frequency. The rectal spasms are unbearable and completely interfering with a "normal" life.

Saw the surgeon for my 8 week post op visit one week ago Thursday and he said that I'm included in the small percentage of patients where the UC has returned in the remaining portion of the rectum (he didn't remove just the lining so I have a good portion of my rectum left).

He put me back on Canasa Suppositories (1000mg at bedtime). By Tuesday of this week I felt worse - more spasms, more blood/mucous and called his office - he said I can take 2 suppositories per day. As of today, I am still feeling pretty bad. The only relief I have is if I sit in a chair - and that's just temporary relief. Every time I stand or try to walk, the intense feeling of wanting to have a bowel movement is present.

The surgeon wanted me to lose 20 pounds before step 2 because of my past long-term high doses of steroids. My eating habits are good (4-5 small healthy meals), but I am not able to exercise other than an occasional walk (in my previous life I was an avid athlete). I've only lost 5 pounds or so since the first surgery.

I'm religious with my Kegels and I have the ability to hold it in for the most part, but then I get an awful feeling all over my body with goosebumps. I'll then go to the washroom and try to expel the blood/mucous. Sometimes I have success and other times I don't. But either way, it's somewhat of a painful feeling.

Has anyone been told that their UC has returned after surgery? If so, did medication help or did you have to have additional surgery to have your rectum removed? If the rectum is removed, does that mean one has to have a permanent ileostomy? If meds worked, how long did it take for the spasms to dissipate.

I know that a small amount of blood/mucous is normal. But for me it's an all day/night thing.

Sorry for the long post and thanks in advance for any advice!

Sindi

Having UC in your remaining Rectum is completely normal. I too am in the process of a three step procedure and the entire time between step one and step two my remaining rectum was in a constant flair. A week after my colectomy I almost bled to death and required a week in the ICU due to an ulceration that ate into a major blood vessel (I was also given medications that can cause intestinal bleeding that compounded my already bleeding colon).After I was released I was still taking prednisone and found that in the mornings would be the worst then after I took the steroids it would improve then decline at night again. I only got down to 12.5 mg pred at the time of my second surgery and was also on a cocktail of Steroids enemas and canasa. All with almost no avail. In the beginning the spasms were intense and excruciating. Over time however The spasms subsided and there was only bleeding and minor pain.

After my second surgery I had a few abscesses and after they were straightened out I was still in severe rectal pain. My doctors think this is because of the 1-2 cm of colon remaining that the j-pouch is stapled to. I am going to have a surgery on may 8th to remove the rest of the colon in a procedure called a pouch advancement. I was always told that the 1-2cm of remaining colon was needed to stitch the j-pouch to but apparently you can do with out and they can still form the anastomosis.

I am in no way the norm and tons of people who who have flairs in between step 1 and 2 are fine and don't need medication let alone additional surgeries. If after takedown the remaining colon is a problem and becomes inflamed then a canasa suppository or steroid enema are usually all it takes to induce remission again and take pentasa or asocol for maintenance. Even if medications did not work before the j-pouch formation surgery. It sounds strange but its true. Even if these medications are necessary most people still find it a vast improvement to UC. I also apologize for the long post but hope this helps!

It can definitely happen- be sure to take extra vitamins! I had the same thing- perhaps they would be willing to push up your step 2 surgery because of this?

Once I had step 2 with rectum removal, I've felt great. It's amazing how much better I feel. (I'm still waiting on step 3.)

Good luck!!!!

I had the 3 steps as well and I had the same pain after 1st step and I took Canasa and B&O suppositories to no avail, and even pain killers barely helped. My pain went into my tail bone and I had to buy a pillow with the hole in the middle in order to sit at work and also used a heating pad constantly. Oral prednisone seemed to help a little and I think that cortifoam enemas would have helped along with the prednisone. The pain went away after the second step surgery when the pouch was created.

I really feel for you and hope that you can get the pain under control soon!

Thanks KeithO, Kat and tbraz for your words of wisdom!

Tbraz - I can't take prednisone because of the upcoming surgery. The surgeon wants me to be steroid free. He said that I'm having the 3-step because my small intestine was too rigid (d/t the high doses and long term use of steroids) to form the pouch. I just can't take that chance of that happening again!

Sindi