Variety of issues

duke_0518Member

I have purused the threads somewhat in the past, it's been informative but not very helpful. At my 3 month follow up, my surgeon asked how I was doing. I expressed I am in a lot of pain. "Hmm, that shouldn't be" and when we discussed bowel frequency, I'm rather on the high side and he says" that's too much, you should take immodium". I never said it was diarrhea, often it isn't, and immodium is ineffective anyway. Much of is at night. As a result, I can't get much sleep at all most nights, typically 2-3 hours. I mentioned this in another thread, and got some feedback but not anything useful.

At nearly 6 months after takedown, and 9 months after my colonectomy/illeostomy and j-pouch creation, I'm still having problems.

piriformis syndrome? - which is like a muscle spasm or nerve irriation, quite crippling! I'm thinking I've had this a few times now. I am getting more and more intense pressure near the anus, like there is a softball shoved up in there, but nothing comes out.

Frequency of BM - After all this time, it's still 10-20 times per day, with a high of 27 and a low of 7 in the last 90 days. 1/2 or more of it between 9PM and 5AM when I should be sleeping. It sometimes feels like broken glass, or razor blades. It is rarely without pain. Sometimes it burns intensely as well.

butt burn - I can treat this on the outside, but how do you treat it when it feels (and seems to be) on the inside?

It seems early for pouchitis, and this all started about one week after the take down, and has been up and down. I have had many bad weeks, and have had only a couple of good weeks. I can't even nap. Being horizontal brings out the worst. I still have my stash of sulfasalizine from before, that helps, fiber, and ibuprofen. On really bad nights I resort to the percosets left over from surgery just to ease the pain at night because nothing else will work.

My surgeon is a pretty awesome surgeon, but I'm feeling let down with the very weak follow up.

Apologies in advance if I sound ignorant or disorganized. It's just so much and it'w wearing me out. It's starting to make my job and personal life miserable from lack of sleep and nervous about going more than 30 minutes without a bathroom break. It comes sudden and intense sometimes.

3/21/131:17 AM

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Jan DollarModerator, RN, retired

It sounds like you have an anal fissure, which could cause or contribute to all of your symptoms. The fissure causes anal pain, which in turn leads to anal spasms, which prevent effective emptying. That all leads to increased frequency. The reason it is worse at night is because that is when your food manages to work its way through. It can take a year or more to adjust, but you need to address the fissure now. Suggest to your surgeon you think you may have one. He may then say, aha, that is why you are in pain!

Jan

3/21/131:29 AM

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Jan DollarModerator, RN, retired

Cuffitis nearly always involves rectal bleeding. Fissures can too, but as aconsistent symptom. There are no pain receptors in the rectum, so the discomfort with cuffitis is different. It is caused by the irritation of the nearby anal canal, crampting and diarrhea. They both can cause urgency, cuffitis because of the increased peristalsis, fissures because of incomplete emptying. And, speaking of that, the sensation of incomplete emptying with cuffitis is probably from irritation, while with fissures, you probably are not emptying (because the pain during evacuation slams everything shut).

And, of course, you can have both simultaneously. If you have cuffitis, the rectal cuff would feel bumpy during a digital exam. Fissures do not really affect the cuff, andcan be missed during scope or digital exam (except for the pain it would cause).

When anyone describes emptying their pouch as passing razor blades, I think fissure. The fact that his pain is predominantly surrounding bowel movements is another clue.

Jan

3/21/1310:12 AM

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SubzeromamboMember

I am so sorry you are going through the grinding broken glass sensation, sleep deprivation and the sphincter burning.

I had the broken glass sensation and sphincter burning too. It was terrible. It started about a month after takedown. My doctor did not find a fissure. He diagnosed me with a type of nerve spasm.

He prescribed a very low dose of valium whenever the pain started and half a dose of oxycodone (2.5 mg.)The valium relaxed the nerve spasm and the oxycodone helped with the burning pain and slowed motility so the number of bathroom visits decreased. My cognitive abilities were not decreased and my quality of life improved dramatically.

Mu surgeon said it happens to perhaps two of his j-pouch patients per year. Most patients have it disappear as their pouches mature. He was not worried about it. He did say that if it did not disappear, there were nerve blocking medicines that a pain management specialist could prescribe.

Three months later the grinding broken glass pain and burning sensation disappeared.

I eat a low fiber/low residue diet, use prescription Questran to decrease highly acidic body waste and do not eat after 6:30 pm. I take a long walk after dinner to speed up my motility so the food is mainly processed and eliminated before I go to sleep.

I tried taking fiber but it increased my bowel movements and I had some incontinence. Did your surgeon ok the added fiber so early?

My pain was worse at night too. I learned to be very, very careful about what I eat for dinner. I kept a food journal that helped me figure out what foods were triggers for bad nights.

We are all very different and what worked for me may not work for you but perhaps it is worth a try? You have my complete understanding and support.

3/23/1312:13 AM

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ValBMember

duke_0518, even though my pouch is old, i still remember those early days. you don't mention if you are on any kind of acid reflux medicine like nexium, or protonix. I wish we had had these back when. Talk to your doctor about something that will help reduce the acids...also, like subzeromambo noted, try to watch what you eat and when. Just a thought, but someone noted on another post yesterday about matzo crackers (?). Wonder if one of these a couple of hours before bedtime might help??? i can't tolerate a lot of fiber either. For butt burn, just watch the food...i have used Budreaux butt cream for years. I used other stuff in past and came on this when my daughter was an infant...smell is nice and it really helps. Hang in there...it all does get better.

3/23/139:28 AM

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magic30Member

Hi. Hey if you have fissures or hemorhoids...its real painful.

Now I had both. And I didn't read the other replies so forgive any duplicates. But heres what I do that works...

Ive done this since right after I had fissures at takedown and it was very painful at first. VERY MUCH. But it has lessoned and unless I eat something that bothers me I have virtually no pain now at a year and some months post take down.

I have medical gloves, A and D ointment and Lidocaine prescribed. I only use the lidocaine for burn now but used it very much when I first started.

After going and making sure you are empty glove a hand and massage A and D ointment around anal area. Lidocaine first as desired to numb pain. Then insert a finger to loosen the schrincter some. This is the cause of fissures...not being dlated enough. So your finger with the A and D is real good to loosen it up some. But it hurts or feels awkward at first.

Hope you feel better. Its so hard at first. And doctors don't hlep much with that.

3/23/1311:55 PM

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