I am writing on behalf of my daughter, Kaitlyn. She is 15 1/2.

Quick history. UC for 3 years. Colectomy 1/10/07. Take down 3/30/07. First bout of pouchitis in June 2007. She has had abdominal pain since getting out of the hospital on July 6, 2007. We have met with pediatrican, 2 G.I.'s, tried acupuncture, met with chronic pain specialists. No one has an answer for her pain.

She called me at work today to ask me to take her to the E.R., as the pains in the last day have gotten worse. Every doc listed above has prescribed vicodin.

I keep trying to tell her that she needs to eat better. She refuses to believe that what you put in your mouth could be the culprit for her pain.

Any suggestions on how to approach this. I am at my wits end.

Thank you in advance.

Arleen Diamond

Has your daughter described the pain?

Wave like pains that come and go. Sometimes pain is a 3. Most time when they come they are a 10 and last maybe a minute or so.

She has said that she is NEVER pain free.

Arleen Diamond
Kaitlyn, j-poucher, 15 1/2

Wave like pains could be a result of a blockage, whether it is something wrong in the pouch, like adhesions, or a food block.
You commented on her diet...does she eat like a normal 15 year-old? Does she chew her food well?
Have they done any tests to look at the pouch?
I'm sure I don't need to tell you, but 15 years-old is young to have this type of surgery.....bear with her! I was 25, had thoroughly researched everything, counseled with others, and still had incidences!

Hi, Arleen, glad you posted here.

I have met Kaitlyn and Arleen several times, folks, and I'm hoping some of you will have some ideas, because they have pretty well exhausted the medical people in our area. This situation is particularly distressing because Kaitlyn's surgeon told her before agreeing to surgery that she likely would have chronic pain! So it's almost like a self-fulfilling prophecy--except that, as we know, it doesn't jibe with most j-pouchers' experiences, and nobody has said WHY this should be so. Arleen, what is the status of the ovarian cyst they also said wasn't the culprit?

First of all, I would not assume that what she eats causes her pain unless there was a direct cause and effect noticed in association with certain foods. If so, she should keep a food diary and monitor this and act accordingly. This would be particularly true if she has known IBS. Otherwise, I think it is probably too simplistic to think it is diet alone. There are many of us who do not have chronic pain and eat anything we want.

The description of the pain sounds very much like what occurs during an obstruction. However, what I don't understand is how the surgeon could predict she would have chronic pain before she had her surgery, unless she had chronic pain at that time.

But, let's assume she did not have this before surgery. Pain specialists do not diagnose pain in most cases (other than narrowing down the nerve path of its origin by doing nerve blocks). They are there only to treat the pain as a separate entity. What tests have the two GIs and pediatrician done to rule out the typical culprits of obstruction, infection, and nerve damage?

I am going to assume that because of her age, they are less interested in adequate pain control out of concern of addiction, but of course, throwing Vicodin at it probably neither controls the pain, nor prevents dependence on narcotics. If she has problematic adhesions that cause periodic obstructions, kinks or whatever in the intestines, narcotics could actually make things worse if her gut is slowed too much.

If she has had all the labs, scans and/or imaging tests done that would rule out infections or serious obstructions, I would suggest a referral to a pediatric neurologist to look into nerve damage or trauma. After that, I think the only solution would be an exploratory laparotomy to actually visualize if there is something physical to treat. Once all those stones have been turned, then you may have to rely on chronic pain management, and you will need to find someone who deals with adolescents and is not afraid to treat it effectively.

Not knowing your daughter, I need to also consider if there is a psychological component that needs to be explored. But, this should be only after all physical causes are ruled out. One problem with chronic pain is that once the pathways have been laid down, it can become a "self-propelled" disorder, with pain occurring without the original stimulus. It occurs when the original pain is never properly controlled. It is sort of like a repeating loop that you cannot shut off.

http://www.ninds.nih.gov/disorders/chronic_pain/chronic_pain.htm

Jan

Thanks for posting.

In my gut I truly don't believe it is food related, as during her pouchitis time in the hospital, she was NPO for 5 days and the pain was still there. She was TPN for 2 days and the pain was still there. The surgeon finally gave up and sent us to another hospital where her pediatric G.I. is located. We did another flex-sig there and the pouch looked good.

The history of chronic pain was put in her head from her OLD G.I. who diagnosed her with UC. Told her that she shouldn't be in pain with UC and that there was no reason why she shouldn't be going to school. So, of course this information gets in her file and therefore it becomes a part of who they think she is.

No tests have been done to rule out obstructions, infection or nerve damage.

One reason we were sent to the Chronic Pain Specialists was to help learn to manage the pain. After a 90 minute meeting, he commented that she might be "depressed" and suggested a psychiatrist (whom we have met with) and because she is not 18, could not be a part of his Chronic Pain clinic and gave her the vicodin.

Connie, the ovarian cyst, - status is it's normal and go about your day.

We had blood work, urine work and poop lab work done on September 8 and I've contacted her doctor 4 times now and haven't received the results.

All of her previous C-diff tests have come back negative.

Just got home from work and she has decided she does want to go to the E.R. So, I'm in for a long night.

Thanks for all your advice. I appreciate it.

Arleen Diamond

I am going to go out on a limb and make some suggestions. First, in my opinion, pain is very personal, and subjective. Although it is important to try and discover the origin sometimes you can't. It may be physical or psychological, to me it does not matter it still needs to be adressed. Pain is pain.
I also get some 'waves' of cramping that at this time have an unknown origin. I take Levsin SL with some relief. There have also been some postings on this site regarding anti-depressants that deal with pain and depression (I am not that knowledable about this, but it is worth looking into). It can take care of 2 things. In the area you live in they offer CBAG (Children Bereavement Art Group). It is at all of the area hospitals and that may be an out let for your daughter. I think it is a very valuable tool. It may not 'fix' the problem but it provides a sense of control for the person in dealing with circumstances that life has presented her.
Perhaps your insurance will cover dietary counseling. Most 15 year olds I know are willing to hear information from a 3rd party. I am not sure if this is any help. I am sorry for your struggles.
JA

My only other thoughts are celiac's disease or Crohn's. I have had episodes of what I believe is my Crohn's acting up and it is also wave like...
Both of which are not always easily diagnosed but could account for the type of pain she is experiencing.
Good luck

Arleen, if your daughter is up to it, I would be more than glad to talk to her. I'm 17, and I had chronic pain for 2 years. Docs decided it was "all in my head" and put me on paxil. Turns out it was kidney stones. I got them removed and have been pain free for almost a year. Like I said, I'd be happy to talk to her if you want to give me her myspace/aim/whatever.

Shelby beat me to it. I was thinking while at dinner that I did not address Crohn's or Celiac. However, if it was Celiac, it should have improved when NPO and on TPN. But, Crohn's definitely should not be off the table, particularly when she has not had the diagnostic procedures to rule it out. If they cannot find any obstructions, then a camera pill endoscopy might be in order.

I am so sorry that you guys have been essentially dismissed and told to suck it up and get over it. If you are just beating your head against the wall with the current doctors, then it's time to keep searching for someone who will keep looking until there is an answer. Certainly, depression can exacerbate somatic symptoms. But what came first? The symptoms or the depression? My guess would be the symptoms.

Have you gone to UCSF? Might be worth the travel...

I thought the same thing about the NPO and TPN and she should have felt some relief but sometimes it takes a while for Celiac's to calm down... and I've read in some cases that a gluten-free diet still doesn't always work to relieve symptoms completely.
As for Crohn's, the wave-like pains usually occur after eating, at least for me.

Hi everyone,

Well, we spent 4 hours in the E.R. last night. I think that might be a record for a quick turn around.

Left with a prescription of Dilaudid. Doc was very nice, but pretty much said, he didn't have any answers. They didn't want to put her through any more CT scans. So, we laid in the hallway for 4 hours and that was that. They did take a urine sample and told us to meet with our pediatrician on Wednesday.

Crohn's has been ruled out. Every test they did over the 3 years with UC was negative for Crohn's, but what are they missing? I am not a doctor or a nurse, so what testing should I push them to do?

I have tossed around Celiac disease in my mind too. I will ask her pediatrician today if they can test for it.

Kaitlyn's pains come and go throughout the day. Whether she eats or not.

I have been to UCSF and met with Dr. H. He gave us imodium and told us to come back in 6 weeks if no change and they would do some scans. I have not been back for a couple of reasons. Partly because of the drive and trying to get MORE time off from work and the fact that my ex's health insurance has a big co-pay that I really can't spend money like that when I have Kaiser locally. (Kaitlyn is doubled covered). (I know...her health is most important..but I need to look at all sides.)

I truly appreciate everyone chiming in with ideas, suggestions, comments, etc. You folks are the best.

Hmm... Kidney stones? No one has mentioned this, but they have done ultrasounds of the area. Wouldn't those show up there?

They told me the ovarian cyst they found was normal and refused to think otherwise.

We met with psychiatry and he does not believe she is depressed. He is going to set us up with a therapist just to let her chat freely.

I will keep pushing and searching. That's all I can do as a mom.

Thanks again everyone. I'll keep you informed.

Arleen Diamond
(Kaitlyn, 15 1/2, j-poucher 3/30/07)

Yes, kidney stones would show up. I'm not saying it is kidney stones, because you haven't described exactly where it is. But I had my kidney stones since I was 9. They knew they were there, but for some reason, never took them into consideration as being a problem. I don't know much about them, because my case was atypical- not only were they from dehydration, but they were also because I have a deformity in my right kidney. All the stones I've had have been in the right kidney, inside the deformation. So yeah, I'm not saying I think she does have stones- I really have no clue. But if her pain is localized in the lower back/flank, I would maybe check it out.

Kidney stones may not always show up on ultrasound, but if she has had abdominal CT, they would be picked up then.

Crohn's can be missed if only upper GI barium series was done. A better bet would be upper endoscopy and/or camera pill endoscopy. Camera pill endoscopy has picked up Crohn's lesions in folks who had suspected Crohn's but no verification on other studies. IBD serologies may or may not help lean one way or the other.

Since you have Kaiser, see about working within the system. You can get referrals to other Kaiser physicians within the Kaiser system. I can recommend my GI, Dr. Jean-Luc Szpakowsi. He has been with Kaiser since 1980 and did his internal medicine residency and GI fellowship at California Pacific Medical Center in S.F.. One of his philosophies is to really get to know his patients and listen to them. After many years in S.F. he transferred to Fremont a couple of years ago. It's still a drive, but closer than S.F. http://www.permanente.net/homepage/doctor/jeanlucszpakowski/

Anyway, there are many, many Kaiser medical centers in northern California. Plus, Kaiser will pay for second opinions when indicated.