Frequent illness


Posted by: Connie , Apr 02,2012,10:26  


Really, I thought he would outgrow it, but it hasn't stopped. At 21, he is still sick every other month at best, sometimes every month. In January, a viral illness triggered severe pouchitis. Last month something seemed to come and go (simmering) and finally has manifested as an ear/sinus infection. And so it goes. A dozen years ago he tested negative for immune deficiency syndrome. But this is not normal--is it? Nobody looks at the whole picture. Our PCP is useless, and specialists only see their ailment of choice.
Connie (Tom, UC; j-pouch age 9)


Replies:
Re: Frequent illness

Re : Frequent illness --- Connie
Posted by: francie , Apr 03,2012,11:20 Top of Thread


Connie, Sorry to read about Tom. Has he tried a neti pot? My sister with Meniere's disease gets sinus infections and she now uses a neti pot with a saline solution (probably homemade but I"m not sure). It has reduced her sinus infections considerably especially around her allergy season. BTW once she does get an infection the neti pot is pretty useless against it but works fine once the infection is gone and keeps her "clean". Just a thought - and if it were only that simple...

Francie (Adam 20, UC dx 8/06)

Re: Re: Frequent illness

Re : Re: Frequent illness --- francie
Posted by: Connie , Apr 03,2012,11:34 Top of Thread


Yes, thanks, he uses Sinus Rinse (though not as religiously as he is supposed to) which is similar and excellent therapy. In fact, several years ago the pulmonologist told him it is essential maintenance for chronic sinusitis.

Re: Frequent illness

Re : Frequent illness --- Connie
Posted by: Patricia , Apr 02,2012,13:14 Top of Thread


did they do a complete immunological work up Connie?

Badger was seen at UCSF Immunology a couple years ago when he had a non-stop year of infections concluding with pneumonia. I can't recall which doc we saw but she was very good. She definitely stepped back and did the big picture when all his labs were relatively normal. Insisted most of the problem was pulmonary and he needed to see a pulmonogist.

Our PCP had been unwilling to refer him before that but the pulmonologist completely agreed with her and started Badger on inhaled steroid despite a lack of chronic asthma symptoms. He also said he felt that the MTX was helping to keep Badger's asthma under control which I thought was very interesting.

Is Tom on any immune-suppressing meds? You probably already thought about whether there's an underlying chronic inflammation that is predisposing him to upper respiratory illnesses. Might be worth a try if he's getting sick that often/severely.

Are you aware of the latest research on pouchitis? It may be it's own form of IBD and may need active ongoing treatment much like UC or CD. Bo Shen at the Cleveland Clinic is one of the lead researchers and clinicians in this area.

Hope he is feeling much better soon.

Patricia

Re: Re: Frequent illness

Re : Re: Frequent illness --- Patricia
Posted by: Connie , Apr 03,2012,10:51 Top of Thread


Thanks, Patricia. He did get an immuno work-up at UCSF a few years ago--no significant findings beyond those of his local pulmonologist, whom he no longer sees. He knows the options and is "done" with sinus surgery, so has become resigned to coping with a certain level of sinus distress--though at this moment, "coping" may be a misnomer... Fortunately his pouchitis has not been resistant or chronic.

Re: Frequent illness

Re : Frequent illness --- Connie
Posted by: curlyqsmom , Apr 02,2012,13:06 Top of Thread


Connie,
Really sorry to hear that after all these years Tom (not Thomas anymore? ) is still having problems. It's been so many years that I can't really remember whether he has tried something alternative like accupuncture, homeopathy or chinese medicine. I seem to remember that you did a long time ago, but I might be wrong. Even so, it might be worth trying again--or multiple. As you know we've dabbled over the years and while we have yet to find or stick with anything long enough to induce remission, I really do credit the alternative "stuff" for supporting overall health and immunity. I just can't explain the disparity between the severity of my daughter's disease level and her overall quality of life and resistance to other illnesses.

As of yesterday my dd can finally swallow pills, so our ability to try different supplements, meds, etc is greatly improved. Yeah! Wishing better days for your son. I know how hard it is on you too.

Re: Re: Frequent illness

Re : Re: Frequent illness --- curlyqsmom
Posted by: Connie , Apr 03,2012,10:55 Top of Thread


Haven't tried anything alternative lately, though he has considered acupuncture again, this time for pain. Unfortunately cost is a factor... Glad to hear your daughter is staying the course.

Re: Re: Re: Frequent illness

Re : Re: Re: Frequent illness --- Connie
Posted by: curlyqsmom , Apr 03,2012,11:53 Top of Thread


Connie,
We have found various cost-effective options, though you are right often alternatives are not covered. Here's some ideas in case you want to see what you can find.
1) Search for schools that teach chinese medicine. A quick google turned up two in the Bay Area...maybe some closer to home. They usually have student clinics that are reasonably priced. The students spend a long time because they are learning and are supervised by professors.
2) Some osteopaths approach illness more holistically. We have one in our area and I just pay a co-pay. If you have insurance that covers chiropractic, that can be another good option. Many look at health from a holistic standpoint. I'd have to really search out the name if you are interested, but we saw someone someone when we lived near you.
3)It may be worthwhile to see if the LDN would be useful for Tom. You'd need to find a doc to work with (I could give you ideas on how to do so). The drug itself is so inexpensive.

Anyway, just hoping to give some ideas that might help. I know it is so hard. I am so sorry that he is having trouble still. Hoping he finds something that works. Keep us posted...

Re: Frequent illness

Re : Frequent illness --- Connie
Posted by: Virgie , Apr 02,2012,12:11 Top of Thread


Hi Connie! Sorry to hear about your son but I don't think age seems to make any difference (unfortunately). My son is 22 and is in about the same boat. When he had the surgery I thought "oh good we won't be seeing the doctor and/or not needing much medication anymore" HA!! In December he had such a bad bout with stomach flu that he was in the hospital for 2 days. And then if he isn't having pouchitis (most of the time it seems like) then he is having side effects from the drugs for pouchitis and then needs to switch to a different kind of med and on and on that goes. And now that it is getting nicer out his allergies & asthma are acting up. So I don't know. Are our kids cousins or something that we don't know about??

At least I am happy to say that son got on Medical Assistance so I don't have to worry about his medical bills anymore. YAY!

Does your son get pretty frustrated over this? My son is getting very frustrated about always feeling bad and not being able to do what he wants (school, job, etc.). So he has just started to see a counselor to help him deal with his life. Hope it helps him.

Hang in there Connie!! We are with you in spirit .

{{{{hugs}}}}

Virgie
son 22 j-pouch 12/22/10 takedown 7/8/11 frequent pouchitis
daughter 17 Celiac Disease, Crohns, PSC Remicade


Re: Re: Frequent illness

Re : Re: Frequent illness --- Virgie
Posted by: Connie , Apr 03,2012,10:43 Top of Thread


He has traded in "frustrated" for "major depression." I guess I was naive to think 14 years of chronic illness would not have such an effect. In the past two years, he has been pushed over the edge by an ambitious podiatrist's massive narcotic prescriptions following her ill-advised "experimental" surgery. (Results of a medical board investigation are pending.) Rather than relieving the pain of a tiny, unhealed fracture, which was the only goal, she greatly increased it. Two years and two bone grafts later, he is out of school, still in a cast, still unhealed, still in pain management, still hoping not to lose the big toe. These continual little viral illnesses are just frosting on the cow pie. On multiple fronts, we have a long road ahead.


Re: Re: Re: Frequent illness

Re : Re: Re: Frequent illness --- Connie
Posted by: curlyqsmom , Apr 06,2012,18:18 Top of Thread


Good lord. I am so sorry. Sending all positive thoughts your way....

Re: Re: Re: Frequent illness

Re : Re: Re: Frequent illness --- Connie
Posted by: Virgie , Apr 05,2012,00:46 Top of Thread


I remember seeing the x-rays of his foot on facebook. YIKES!! He's still in a cast?!! The poor guy! I know I was so glad to be out of the casts and able to take a decent shower. Oh I do feel for him. I think I would have more than major depression!!

Hang in there. We will try to be your rock when we can.

{{{{hugs}}}}

Re: Frequent illness

Re : Frequent illness --- Connie
Posted by: MaryS , Apr 02,2012,11:14 Top of Thread


Connie,

I don't know about your neck of the woods but here in Michigan it has been a wicked, wicked Winter and Early Spring season of viruses specially the sinus infection one!! Even the healthiest were not immune to it. So many of my family, friends and neighbors had it at one time or another if not twice!!

Hoping the Spring/Summer months can eliminate these bugs and your Son can have some good months of feeling well.

MaryS (Nicole, 20, dxd Crohns/Colitis, age 17, Remicade triple/Imuran/Asacol)

Re: Re: Frequent illness

Re : Re: Frequent illness --- MaryS
Posted by: Connie , Apr 03,2012,10:58 Top of Thread


The PA we saw yesterday said she is seeing a lot more viral illnesses in kids than she remembers them having in the past. School is a hotbed. For him, it seems almost any social setting is a potential source-- even in summer.

Re: Re: Frequent illness

Re : Re: Frequent illness --- MaryS
Posted by: Arleen Diamond , Apr 02,2012,11:22 Top of Thread


Connie,

Kat has been having the same thing. Fought pouchitis about a month ago and now ear infection.

Sorry to hear Thomas is having the same troubles.

HUGS.

Arleen Diamond (Kaitlyn, 20, j-poucher 3/07)

Re: Re: Re: Frequent illness

Re : Re: Re: Frequent illness --- Arleen Diamond
Posted by: Connie , Apr 03,2012,11:01 Top of Thread


Ditto!--this time it's an ear infection, along with congestion and multiple horrible canker sores, which are often a precursor. Sorry to read Kat has also had some depression. Congrats on her job! Hope that's a boost.