Teen with JPouch...questions

Have you tried chewable vitamins like vita fusion. My teens take those daily. Also if she is dehydrated and not drinking enough this will really zap her energy.

Could be anemia, could be low B12 (more likely). There are several people who have to get B12 injections to up their levels because their absorption has been hampered by the removal of their colon (even if there is technically enough ileum to absorb it).

We thought B12 was the issue with our daughter's thin, rather brittle hair, but it turned out to be low zinc levels. Low zinc doesn't typically cause low energy - but we learned about the effects of both in the process.

As for getting her to eat / drink more, the only suggestion I have is to keep semi-healthy drinks available that she likes.

Steve

She has a JPouch and sleeps 12 uninterrupted hours a day?

She could be suffering from depression or other conditions which are not readily visible to the untrained eye. She needs to see a doctor about this issue. (I find it hard to believe that a doctor saw her about this issue, gave her an iron test, and sent her on her way with no other attempt at diagnosis.....)

I don't mean to sound rude, but she is 15 and doesn't have a vote in the matter. As her mother, it is your responsibility to get her medical attention, and she clearly needs it right now. A message board is not a substitute for a doctor.

I am going to have her iron and B12 levels tested again, as well as vitamin D.

PDXDavid...just curious if you have kids, or teens for that matter. I appreciate your input, as I stated I was open to any suggestions, but I feel you are implying that I am ignoring my daughter's medical needs and only going off advice from complete strangers. Thanks for the concern, and I assure you that is not the case. I am in a Dr's office once a week with this child and we are fortunate to have excellent medical care. I decided to post here to get opinions from real people who live with a JPouch. We all know those are the ones truly experienced! I do agree with you about the depression; she has been through a lot since being diagnosed with UC 6 years ago. We have tried counseling and medication, which helped for a little while. There is only so much you can do to help a teenager....I cannot force medication down her throat, nor can I force her to continue counseling. I wish I could, but that's not reality.

As a mother of two healthy teens, my kids would sleep 12 hours a day if they could. It is not that unusual for teens to sleep till 11 am on weekends. In your case though if she looks and feels exhausted all the time you are smart in having her vitamin levels checked. I needed iron infusions for three months awhile back as I too complained of being fatigued all the time. Also out sleep is very disrupted with a jpouch as I am up usually two times a night to empty the pouch.

As a father, I know that teenage girls can "decide" that obeying their parent(s) is no longer a requirement but an option.

I certainly was not implying that you are ignoring her needs, but (correctly it appears) guessing that she was not being very cooperative in the matter. Hence my statement that she does not have a voting franchise in the matter as he is a minor and you as her parent have final and sole authority in her medical decisions so long as such decisions don't endanger her life and get revoked by a court of law. Now. some may feel that a 15-year-old is old enough to make decisions for herself. I disagree. But that is another argument.

So my point is - again, not to be rude, but she doesn't get to vote. She needs to see a doctor and get it resolved. That undoubtedly puts you in a difficult position if she does not cooperate. But that is the burden of a parent - to get teenagers to do what they don't want to. I'm not delivering new information in that regard to you or anyone else, I'm sure.

Your only mention regarding diagnosis was centered on iron (and later) vitamin deficiency. Again, I find it hard to believe that her doctor is limiting his testing to vitamins. It just doesn't make sense.

Is this just the beginning of the problem? Are these just the first attempts at diagnosis? There are a plethora of possible issues that would cause exhaustion, yet vitamins iron deficiency seems to hold a great deal of weight in your mind as a possible cause despite being dismissed in the past. Have you had iron problems and expect that she might also?

Like I said... I am in no way trying to be rude, so please don't take anything I ask as such.

Sometimes short posts about complex medical issues just contain huge gaps in information that leave one scratching the head, and that is the case when I read yours.

A neighbor of mine lost his son to a brain tumor because he allowed his mother to convince him that it is normal for a teenager to sleep a lot, and that vitamins would fix him up.

He took the boy to a doctor a few times, and since the whole orchestra was singing the "vitamin" tune, the doctor sang along until it was too late.

Whenever I see a TV commercial that tells a person suffering from "feeling tired" to take vitamins, I want to throw a brick through the TV. I sometimes wonder if the vitamin industry hasn't killed more people than it has helped.

That is one of my pet peeves.

Her Dr is not the one suggesting the vitamin testing - I am. I have heard that those without a colon cannot absorb certain vitamins and that is why I want her to be checked (again). She has seen so many Dr's and has had so many tests done and there has not been one reason found to explain her fatigue. She was in the hospital over Labor Day for what was thought to be a partial blockage, and had every blood test under the sun and a CT scan. If something out of the ordinary was going on, we would have found out then. That is why I am curious about her lacking vitamins...she has no colon, cannot eat many vegetables, is growing, under stress and hormonal. She also has been on many courses of Prednisone...Why wouldn't I have concern over possible vitamin deficiency? Her fatigue is nothing new; she was very anemic prior to her colectomy because of 8 months of non-stop bleeding. I am in NO way making a claim that I believe vitamins are the answer to ANYTHING. I don't even take vitamins myself. All I am trying to do is help my daughter gain some energy. She has been tested for everything else. I don't think I am doing any harm in having some bloodwork done.

never implied that you were doing harm by asking for blood work.

The information missing that made me scratch my head was that she has been seen extensively for this issue and has been thoroughly tested for a wide range of problems, with no diagnosis resulting.

Now that you have provided that information, it makes more sense that you "go back to basics" and start from scratch.

If I had a message for your daughter, it would be that ignoring a problem can sometimes seem to be harmless, but it can actually be very harmful. I've been there myself, when I delayed seeking medical attention and ended up with a much worse health issue than before.

There are possibilities unrelated to the J-pouch. Is she sleeping okay? Folks with sleep apnea, for example, can sleep a long time but never get any rest.

There really is very little in the way of nutrition that is absorbed in the colon, so you can't assume that there is some sort of deficiency because of the lack of the colon. However, chronic, subclinical dehydration is common, as it takes time for the small bowel to adapt to absorbing more water. Chronic dehydration absolutely will contribute to chronic fatigue, as will chronic anemia.

If she can't tolerate the iron pills, you can try experimenting with various types, as they are not all equal in tolerance. Plus, she needs to take them with something acid, like orange juice, or vitamin C to assist in absorption. She also must avoid taking them with dairy products or antacids, or that will delay or block absorption. Can't stress hydration enough.

As far as fruits and vegetables goes, she should be fine with easy to digest canned stuff. Yeah, it isn't as good as fresh, but the nutrition is there regardless.

I agree that you can push and nag your kid only so much before they shut you out completely. Any chance she can get in with the school kids and maybe just some tutoring to help her stay on top of things? I wonder if she's feeling like the world is passing her by. Maybe the challenge of school would give her some motivation. I know that I always had more energy when I "had" to perform. Just wondering...

Jan

As an ex 15 yr old girl and mother of a former 15 year old girl, that we had to drag to therapy, my heart goes out to you Some people are too quick to assume things not written. I find it best to best to ask before assuming. I hope you understand we all want to help.

My first thought was that there might be other autoimmune problems going on with your daughter like an underactive thyroid, chronic fatigue or fibromyalgia, to name a few. If I were you, along with the testing for vitamin and iron levels discussed, I'd have her thyroid and metals tested and set up an appointment with a neurologist and a rheumatologist. She is young but once we get an autoimmune disease others tend to follow.

She probably is suffering from situational depression so therapy would probably help. I'd be depressed if I was home schooled with a j-pouch and missing out on high school and the social life with my friends. Some things just can't be helped. A friend of mine's daughter did about half of her high school work at home with her UC. It was difficult for the entire family. I'd be scared of having her on any type of antidepressant. I've heard so many scary things about them and teenagers. I've heard a lot about the colon and the production of serotonin needed for our brains. I need to take an SSRI but there are many people on here and I don't hear about many taking antidepressants.

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As an ex 15 yr old girl and mother of a former 15 year old girl, that we had to drag to therapy

Good for you for not giving in and relinquishing your parental authority. You do what you have to do.

quote:

She probably is suffering from situational depression

If she was not, that would be very unusual. Dealing with teenage hormones PLUS a JPouch and any and all of her other personal and unique teen-age troubles, her emotional plate is unquestionably full.

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therapy would probably help

Her daughter is not cooperating with attending counseling. See her posts above.

Regarding messages to your daughter:

I would add another message to your daughter if I had an opportunity: Listen your mother in this matter of therapy. Even if "depression" is not the CAUSE of your exhaustion, you MUST have a ton of positives you can get from therapy in your situation. It's not about being "crazy" or "neurotic" or any such thing. It's about having so much crap to deal with, that a professional therapist can help you deal with it so it doesn't seem so overwhelming. And therapy is never a one-or-two visit thing. Before you can develop a rapport with your therapist, it might take a while. A therapist can also help you develop better ways to tell your parents what is going on with you. There are few things in life more frustrating than cross-communication, miscommunication, and non-communication, and in your situation, with so much out of your control, communication is one of the things YOU CAN CONTROL. Use it to make things better.

When my daughters were teenagers and wanted to "sleep in" past noon, I discovered it was because they were texting all night. LOL

But seriously, the only time I have felt tired and needed to take naps since having my J-pouch is when I had pouchitis. Maybe pouchitis causes dehydration and dehydration causes tiredness.

Hi, seriously. I am a mom of two teenage daughters. That is tough enough. I know you are worried about her. I like the suggestion of the vita fusion vitamins. They are gummies and taste like gummies, not medicine or vitamins. They are at Walmart and are economical. After all of the medicines she has taken, she is probably not interested in more "medicine". They make Vitamin D and I take these.There is also a Vitamin B gummy by another company and it is at Walmart too. Sometimes, as a mom, it is sooo difficult to watch our kids hurt and struggle. This support forum is a good place for you to ask questions and share your concerns. Most people do not understand what it is like to have a child who has been through such difficult things or what it is like to be at the doctors office frequently telling them there is something going on with your teenage daughter but you are not sure what.Hang in there and if you need to get a different opinion from a new doctor with fresh eyes then go for it. Also, during her period week, that may make her fatigue worse. I think periods are really tough with jpouches. She is two years out from surgery and I know I was still pretty tired at that time.So it may be the wear and tear she has taken on her body at such a young age especially as she was just in the hospital.

My heart goes out to you (and any mother of a 15yr old girl but especially one who is going through serious health issues),
I was that 15 yr old girl way back when (the 1970's) and I can tell you that being different from the other kids was a huge jolt to my ego and system...does she have close girlfriends? Would she have a best friend to talk to? Not being in school means that she is even more isolated than normal and makes it harder for her to find the real support that she needs..other kids her age...can you get her to go back to highschool for a couple of classes a week? Some schools will authorise it for medical reasons...she needs friends, outtings and a social life...sometimes it is enough to kick her system back to normal...being sick does not always mean illness but just adaptation.
Does she do any sports? Does she exercise at all? Does she go out for a walk? She needs physical activity too, even if she is tired it can help...
Give her a list of things that you would like her to do, start doing or stop doing and tell her to choose only 1...1 out of 10....and that way she still feels like she is in charge...and then work on the next one.
Heartfelt hugs and hopes that she feels better soon.
Sharon

Hi

To answer a few questions...PDX...she has been in therapy for most of this year. She stopped going a month ago and does not want to go back. She feels she got the help she needed and now wants to move on. There is no way I can remember to share every tiny detail when I write posts! You are wrong to imply she is ignoring her health. She is not ignoring anything...she just wants to live her life and not spend it in a dr's office. She is tired of being poked and prodded and then not getting any answers. Last year our medical costs were over $28,000...out of pocket...does spending that amount of money sound like her health is being ignored??? Oh, and She has had her thyroid tested at least 5 times this year. As for you assuming I have chosen to give up my parental authority, that is also incorrect. I really find it bothersome that I ask a question about my daughter's health and I end up having to defend my parenting skills. You seemed to have missed the part where I said we have tried counseling and it helped. If you would like to ASK me questions about what we have and have not tried, please ask and not assume. I won't be explaining/defending my parenting ways anymore.

As for the school situation, she does not want to go to regular school. She says most of the kids in High School are on drugs and she doesn't want to be around them. She went to school last year, caught a virus in April and spent the rest of the school year at home. This situation was made worse when her counselor gave us incorrect information which caused my daughter to fail 2 classes. As much as I would like her to attend school every day, I am fed up with the school and the fact this counselor is not being held accountable for the damage she caused. My daughter spent the summer attending summer school and being tutored 3x a week to try and catch up....and she still did not get credit for the two classes.

She does attend "regular" school for her elective, which is 90 minutes every other day. She sees her friends and has never complained she feels lonely or that she is missing anything. High school is just not her thing, which stinks because I loved high school! But she is not me! She has 2 best friends and is with both of them every weekend. She is a very confident girl and mature for her age. I have absolutely no worries about her being isolated.

She has taken antidepressants and did not like the way they made her feel.
Phoenix mentioned that she is probably tired of taking pills, and you are absolutely correct!!! She even hates to take Tylenol.

Um, what else?? She belongs to a gym and goes a few times a week with a friend. Scott, I have thought about sleep apnea. However, the last thing we want to do is go thru a sleep study! Are there other ways it can be diagnosed?

To the ladies: thank you so much for your kind words and your understanding of how difficult this is for us. I appreciate your suggestions and understanding that you cannot force a child to do anything

Seriously...

Sorry if I interpreted your statements that she doesn't want to listen to you, that you agree she is depressed, and you "can't force her to continue counseling" as an indication that your daughter won't listen to you and might benefit from more counseling.

My bad. You are right. Only females can understand teenage daughters.

You know.... reading your first post... and reading your last post.... I would never guess we were discussing the same person.

Oh wow! I'm so sorry you and your daughter are going through all of this. Sometimes it seems that even when you play by all the rules and do everything right, the people you depend on to protect your child's rights still let you down.

A member here has a son, now grown, who had j-pouch surgery while in grammar school. He had oodles of complications, and later, developed other related chronic illnesses. She had one battle after another with the school system. I think he wound up taking the high school proficiency exam to graduate early and just move on to college. He was doing OK in school, but had continued health problems, chronic pain, and serious depression. Things got very bad. I don't know what she could have done differently.

I completely get it when kids are "done" with being under the microscope all the time. I wish I had a good compromise for you. I guess you have to give her some control, while still keeping a very close watch over her.

I'm sorry I don't have good answers for you.

Jan

PDXDavid...please don't respond to my posts anymore. I came here for advice and support and all you are doing is harassing me. I have enough stress in my life; I don't need people like you (wrongly) judging my daughter and my parenting. I have tried to be nice, but you continue to be a jerk. You assume things that aren't true and compare our situation to your neighbors child that had a brain tumor. Really???? This is how you provide support to people? You have done nothing but upset me, which is the last thing I need right now. The only thing you have been correct about is that only females DO understand teenage girls.

I've been through about six sleep studies, and they are a nuisance. There are some tests for sleep apnea that can be done at home with borrowed equipment. They aren't very reliable, so the docs tend to want a sleep study afterwards anyway, but sometimes they can offer clues. Good luck!

I agree with the "decorum" policy of this site:

.....That means, try to be as polite as you would be in person in a public place, where you care about what people think of you. That may sound dumb and condescending, but we have people coming here who are frightened and do not know what is going on. We have children that come here. The last thing they need is to wade through a flame war or a debate. That may sound boring to you, but it has been the trend here since Bill J took his time and money and started this safe haven.

Lesandiego - I came here as a worried parent to get advice and support, not to be harassed the way I feel PDXDavid has harassed me. It has been very upsetting for me and the last thing I need is more stress in my life. I will find another forum where I don't have to deal with this kind of crap. Thanks to those who were kind enough to offer support.

And to PDX ...thanks to you, I am going elsewhere for support. All I asked for was some advice regarding my daughters fatigue and all I got from you was judgement, rudeness and more grief, as if I don't have enough stress in my life. I sure hope you are nicer to other members than you have been to me.

Seriously,

My posting about decorum was in TOTAL SUPPORT for you. I did not want to point the finger at anybody in particular, but I completely agree with how a certain poster has made you upset. The last time I tried to defend a negative unsupportive posting, I spoke up, but then this poster started to attack me. I was really hoping that the moderator would be the one to "speak up" about decorum.

Unfortunately, my hope that the concept of ignoring bothersome posts did not work. Usually it does, but not in this case. Sometimes people think they are being helpful, by being blunt and stating what they think, without realizing that they are reading between the lines and assuming facts that have not been presented.

I have had a dialog with PDXDavid privately, as I actually felt compelled to delete a post. He did not know or feel his observations were viewed as unhelpful. I think sometimes people see something that reminds them of another circumstance, when it is not at all the same. Most of us are not professional therapists, so we have to give some leeway.

I would like everyone to just assume that anyone asking for help is more fragile than us (especially when kids are involved), and try to be more gentle. Nobody expects to be challenged or judged when asking for help. I don't mean to be the thought police either.

Bottom line, understanding and support is why we are here. Some of us sometimes step on each others toes, but not intentionally.

Jan

Seriously?
I think you received great advice about the gummy vitamins, especially since your daughter's on the low side of normal for iron. The the vitamins with iron will do nothing but help. I should have known her doctor was monitoring her thyroid!

We had similar sleeping concerns with our teenage daughter. She didn't have any health problems. In college she said her hobby was sleeping. As a wife and mother she goes to bed an hour or so following her boys. I don't call her home after 9:30 p.m.

Your daughter's body is probably still adapting to the new plumbing plus the time it had faulty plumbing to start with. She is growing and maturing during this time as well. I could never get enough sleep when I was her age either. She sounds full of life and it sounds like she is doing everything a flourishing 15 year old does.

I had a baby born with a health problem that wasn't resolved until he was 15 years old with a heart procedure called an ablation. The first time he was converted, with electric shock, he was 2 days old and he was born weighing 10 lbs and in perfect health, except for a heart rhythm problem. I gave him medication, rushed him to hospitals, had to dunk him into ice water to shock his tiny heart and then later he would come to me and tell me when it started racing. It's harder having an ill child than being ill yourself. If I could have I would have traded places with him. I worried for 15 years. Now he is great and has had no problems since then. He is a caring smart healthy 33 yrs old husband and father.

I know no one can tell you nothing is wrong with your daughter. You are going to worry.

I think you can actually do a real test sleep study at home (where it's more reliable). Check it out with your doctor.
Hang in there, Seriously. You are a great parent. :-)

Seriously?,
I have had my j pouch now for three years. I am chronically enemic. Kind of a mystery as to why since my j pouch is in tip top shape and I don't have bleeding. I just can't seem to hold on to iron or absorb it well for that matter.

I started seeing a hematologist and I get periodic iron infusions. Oral iron does nothing for me. The infusions help a great deal and it looks like every so often I just have to do them. He checks my levels every 4 months. Also don't just have them check her hemaglobin but have her ferritin levels checked too.

Colon absorbs water, small intestine absorbs vitamins/minerals. Duodenum absorbs iron. So don't assume vitamins.

Is your doctor only testing her hemaglobyn? What are the Ferritin levels? Most doctors do not test Ferritin. Mine showed I was very anemic but other idiot doctors kept saying I was fine based on the hemaglobyn. Good signal someone is anemic if they crave and eat ice all the time. I will go through bags of ice a day the worse I get.


On a side note. It is the internet, people say I am an a-hole all the time but yet never met me so judge by words. Can't always do that. I agree with some things PDX says and some he doesn't. We all are hard asses or not. I have people on this board all the time piss me off. Different walks of life, there is an ignore feature, anyone can use it.

Seriously?, if you're still here: I would be that member with the grown son (age 22). Don't give up on this message board because of one bad exchange. There are a lot of helpful people here.

With regard to school, she probably is right about the drug situation--it's rampant. I also understand and have experienced the various other school issues.

Due to life-long chronic fatigue (not chronic fatigue syndrome), frequent illness and the school district's inability/refusal to adhere to his 504 plan, my son dropped out early in the first semester of his sophomore year of high school. This was a double edged sword. Passing the CHSPE and starting junior college at 16 was a great solution academically, with much fewer hours on campus, but disastrous socially. We did not realize the full extent of the effects of social isolation until years later.

Young adults do not always recognize or want to admit depression. It is a tough situation, because you can't force anyone to actually "do" therapy until they are ready. I agree with several of Jan's and TE Marie's comments: she could still be recovering; give her some control, while still keeping a a very close watch over her. My son's depression reached a very severe point from which he is still recovering. For him, it is probably a result of undiagnosed PTSD (beginning with five uninterrupted months and many procedures in the hospital at age 9) and is likely to be a life-long problem.

He is now in his senior year at college, commuting from home. This fall, after a two-year, health-related hiatus, he developed severe strep throat (103 fever for 3 days, numerous large throat ulcers) after only three days back on campus. None of his other physical issues--chronic sinusitis, frequent URI's, poor bone healing (long story)--are directly related to UC; but numerous doctors blame them generally on a faulty immune system. Sleep issues and fatigue are still a problems for which we do not yet have all the answers.

Sorry I can't offer any more advice, other than taking it one day at a time and supporting her in every way possible. Unfortunately some things are beyond our control.

Connie, good to "see" you and I am glad to hear that Thomas is back to doing a fairly normal routine. It would be nice for you guys to have some boredom to complain about instead of the constant medical issues.

Jan

Very recently I went through a bout of having to come home by noon and sleep for about 1 or 2 hours. It was unusual for me so I told my internist who ran blood tests and learned I was very anemic. I thought I was dehydrated because early on in my experience with an ileostomy, I felt the same way and being infused with whatever they give you for that purpose (IV) worked wonders. Not this time! Same symptoms, different diagnosis. Glad I checked it out.