Hi Fellow J-Pouchers,

I have had my J-pouch for 12 years, with relatively few problems until recently. Unfortunately, my luck appears to be running out.

I was diagnosed with a stricture six months ago. My gastroenterologist sent me to a urology physical therapist to help dilate the stricture. Unfortunately, this has done little to help ease bowel movements, pain, etc.

On Dec. 3rd, I woke up with severe epigastric and intestinal pain, nausea, and vomiting. I assumed that I had one of the flus that has been going around. When it did not go away by the 8th, I went to the ER. They X-rayed me, found nonspecific gas patterns, and sent me home with oxycodone and zofran.

I was able to work for ten days with the medication and Gatorade sustaining me. However, on the 18th, the epigastic and abdominal pain was so intense that I had to go to the ER again. This time, they did a CT scan, saw a partial bowel obstruction, and admitted me to the hospital. I was there for seven days during which time, they did an EGD and discovered mild gastritis. They gave me ice chips and clear liquids for the first six days, much of which I could not consume. All of the doctors believed that the blockage, pain, and nausea were stemming from the stricture, but none of them wanted to touch my J-pouch. The only colorectal surgeon in the region was on vacation for two weeks, so they released me on the 24th with the stipulation that I be able to keep down three Ensures a day with the four prescriptions (onadestron, zofran, vicodin, and protonix) they gave me. They also wanted me to get an appointment with my colorectal surgeon as soon as possible and I was instructed to return to the ER if I began vomiting again.

Fast forward to today: I saw my surgeon, and he believes that the stricture would not cause all of the problems that I have been having. However, he is going to dilate me under anesthesia. He is also going to perform a pouchoscopy to see if anything is wrong with the pouch. He says that the repercussions from an obstruction (i.e. nausea, vomiting, and pain) can last for several months.

I have lost ten pounds and still have no appetite. I am still in a lot of pain. My gastroenterologist and primary care physician have told me that I cannot work in the condition I am in. I'm weak, exhausted, and in severe pain. I am now on medical leave from work. As the sole breadwinner in my family, I'm emotionally and financially tapped out, and it appears that there is no end in sight. I love my job as a middle school teacher, and I am struggling with being away from my students. I am not one to call out sick, so this experience is especially troubling.

My questions for you are: Has anyone else dealt with a similar situation? What was the diagnosis? How was it resolved and how did you cope with being on medical leave? I feel useless, frustrated, and tapped out.

Thank you for taking the time to read this. I know it was long.

Sincerely,
Vicky

This message has been edited. Last edited by: Drummer Girl,

I am sorry you are having such difficult time. I don't have any experience to offer you advice, but I hope and pray things get better for you soon. Hang in there.

Thank you, beucfree. I appreciate your kind thoughts and prayers.

Hi Drummer Girl,

My pouch is 20 years old. My luck has run out as well.
I have alot of experience with bowel obstructions over the years. In my experience, hospitalization for 2 days with IV fluids and morphine flushed it out.

Pain medication will cause constipation and make you feel bloated and have no appetite.

How I avoid bowel obstructions: No raw fruits or veggies. They cause bowel obstructions for me. I stick to a low residue diet, ie. foods that do not have alot of fibre. Lots of liquids, soup broths, etc.
I know how it feels to be frustrated, tired, weak, exausted, and tapped out.
My wife is a middle school teacher (20yrs), I know how hard it is for you to leave your students.
Number one, focus on getting some rest and feeling better. You have to take care of yourself.

God Bless,
Markus

Hi Markus,

I truly appreciate your response, and I'm sorry that your luck is running out as well.

I didn't know that pain meds would dull one's appetite. I'm on Vicodin, but it does little to ease the pain, so I take it as infrequently as possible. I get sharp pains every time I put anything into my stomach, so I've been avoiding drinking the full liquids I've been prescribed as well. This is worrying my husband, who thinks I should head back to the ER.

I have a CT scan of the mesenteric vessels on Wednesday to look for a blood clot blocking blood flow to the small intestines. The condition is called chronic ischemia. The small intestines begin to die off and it can lead to gangrene. The possibility of this being the case freaks me out, so Wednesday cannot come soon enough.

Other than the dilation on the 17th and the CT scan on the 11th, I have no appointments. The "hurry up and wait" game is growing tiresome. I feel as if my doctors are looking to me to do the research and suggest possible tests and solutions. It's frustrating, but
I can't think of an alternative.

Thank you again for your response. I hope things begin to look up for you as well.

Take Care,
Drummer Girl

Hi Drummer Girl,

When I take pain medication (in my case hyromorphone 2mg 4x day), it slows down my bowels. The food moves through slower, my bowels feel "full" longer, and as a result, I have difficulty eating.

I agree with your husband, having sharp pains after eating/drinking is not a good sign. I agree that you should head back to the ER.

You did not mention if you are having normal/regular output (ie. # of BMs/day) from your pouch. You are your own best doctor when it comes to monitoring the output from your pouch. If there have been changes in your normal BM pattern over the last few days, that can also be evidence that something is not right.

My advice to you is that you know your body better than any doctor. Also, your husband will notice things that you may not be aware of. That is our job. If something does not feel right, and your husband agrees, I would go to the ER. The ER doctors can do CT scans and get this figured out while you wait.

I will keep you in my prayers tonight,
God Bless,
Markus

I wish they would admit you to the hospital and do all the tests one after another. This is what they did way back in the day. Now everything has to be outpatient.

Order a test, get the test next week or two, go back to doc for results of test week or so after that then order another test and start all over again!

I agree with Markus and your husband.

God Bless you. Please let us know how you are doing.

Hi Markus and toughenough,

Thank you for your responses and well wishes. I'm headed to the hospital for a CT scan of the mesenteric vessels to check for chronic ischemia of the small intestine. The thought of ischemia is terrifying to me, but at least it would be a diagnosis and we could move on from there. It's been a lot of "we don't know what's wrong with you, so we'll stop answering your phone calls."

I'm putting off going to the ER as long as possible because last time I went, they admitted me for a week and released me feeling no better than when I went in and with no plan of action. My husband says at least they can keep me hydrated and manage the pain. At this point, that doesn't seem good enough to me. I'd like some sort of a direction with at least some leads as far as what might be wrong.

I've gone from seven to eight BMs a day to around one or two. I'm mainly sticking to a full liquid diet, so this may explain the decrease in output. I've lost about ten pounds. This morning, I nearly passed out in the shower because I was so weak. If they don't find something today, my PCP said that he'll try to have my surgeon move up Tuesday's dilation. Do you guys think a stricture could cause all of these problems?

Thank you again. It always cheers me up to hear from fellow J-pouchers.

Drummer Girl

hey drummer girl,sorry about your difficulties.all i can say is pain meds and j-pouch issues dont go well together.pain meds make things worse because the j-pouch has to compensate for the added constipation which only makes things more difficult.but consistent bowel obstruction from my experience was obstructional j-pouch failure.

Hey Drummer girl,

Sorry to hear about your problems. I too have been suffering from a partial obstruction.

What I find helpful is to lay down on my side and bring my knees up to my chest, sort of like the prenatal position. This helps me get things moving.

My surgeon is also having me use a catheter (I fill up my puocj with water) to help empty. I am not in a position to say if this can help you, but it is something you can ask your surgeon about.

Best of luck!

Solomin

Hi Drummer Girl,

I will keep you in my prayers,

God Bless,
Markus

Thanks, all. Thankfully, I don't have ischemia, but the CT scan did show quite a large ovarian "cyst." I have Lynch syndrome, so now my OB/GYN is involved. I'm a little scared it's ovarian cancer. After the stricture dilation on Tuesday, I meet with genetic counselors to discuss the benefits of having a hysterectomy. Good times!

Anyone else out there with multiple cancer diagnoses at a young age? (I'm 29 now and I was 17 when I was diagnosed with colon cancer.)

Thank you for all of your support!

Drummer Girl

Drummer Girl,

I just read up on Lynch syndrome. Did they already test you to diagnose you have this?

Do they think the cyst has been causing part of your problems as they can be painful.

Do they know the ovarian cyst is cancerous? Also is it just involving one ovary? I have known many people with ovarian cysts that were not cancerous. It says Lynch syndrome makes you more prone to cancers, specifically colon, but do they know for sure it's ovarian cancer?

I had my uterus removed and retained my ovaries so I wouldn't be thrown into early menapause. I would hate to see you have everything removed at age 29 and thrown into menapause - unless necessary. I would guess with cancer in your history they would not want you on hormones.

I had my ovaries removed when they took out my colon as by then they weren't working anymore. One had a non-cancerous cyst.

Hopefully it is not cancer and they can just remove the cyst or just the one ovary and you can keep everything else.

Have they run any PET scans, biopsied your uterus or anything else to determine if there is cancer? Maybe that's why you are meeting with the counselors. While I haven't had cancer my cousin died at a young age with ovarian cancer. I'm so sad that you have to wait for all of these answers and are in all this pain and misery.

Please let us know how you are doing as we are very concerned.

Good Bless you

Hi Drummer Girl,

I just looked up Lynch syndrome and wonder if they've done tests for it yet?

That said, a lot of women get non-cancerous ovarian cysts and don't have to have complete hysterectomies. Hopefully this is the case with you. I remember driving my roommate to the hospital in the middle of the night and all of her pain was due to a non-cancerous ovarian cyst.

Please let us know what you find out as we are concerned about you. I'm sorry you have to wait in pain for these tests and procedures.

God Bless you and your family