helplessmother

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helplessmother
New Member


Date Joined Jan 2009
Total Posts : 15
   Posted 1/11/2009 9:36 AM (GMT -6)   
cry  my son took an antibiotic in May 2008 and his proctitis because a full blown case of c-dif and ulcerative colitis.  he spend 9 days in the hospital, and we were all in denial of what was happening.  his doctor was on vacation and never even saw him in the hospital.  when he got out he was going to the bathroom 20 times a day.  he lost 50 pounds.  his doctor recommended remicade or surgery.  we were like, how did we go from here to there.  we changed doctors. (just running I guess) the next doctor did another colonoscopy and confirmed the diagnosis, but offerred humera.  said he would feel better in  two weeks.  not.  he was over two months and  then he doubled up the humira.  he finally went to 6-8 times a day, and then before christmas started coming down with bloody stools and diahrea.  going down hill again.  I am more worried about his mental state.  he makes comments like "maybe this time it will kill me".  he won't reach out to anyone.  He won't tell me what the doctor said last week.  he was supose to go for blood work and won't go, as of yet.  I'm worried about his frame of mind and how he's going to live with this.  he was only feeling somewhat better for about 2 months before it went backwards again.  does anyone have any advice?  its hard not to be a dotting mother. he gets so angry with me with I bring anything up.  But he's being distructive by not going to get his blood work done.  his doctor doesn's like prednisone, so he's on 2.5.  I keep trying to play doctor in my mind trying to figure out whats going on inside his body.  is it just a flare?  is it a bacterial infection?  does he need prednisone?  is humira a failing drug?  I'm loosing my mind with worry, both for his physical and mental well being.  Doctors don't seem to address the mental aspect of this disease.  giving yourself injections is very mental.  I feel so helpless.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 1/11/2009 9:58 AM (GMT -6)   

I completely understand how your son feels. I feel the same way often times. I also know that this illness is one that is veru unpredictible. I don't know his exact details but there are a lot of medications that are worth trying before feeling like you have exhausted all the options. THere is always surgery too if it gets to the point where you feel like you have tried everything and failed. Some people don't seem to respond to any medications and others seem to become resistant quickly. Still others have maintained remission for years with medication, some without medication.

It doesn't sound like the GI has given him enough options. I would consult another GI or two it never hurts to get opinions. Make sure you ask about ALL of your options. Don't let them tell you that something is the ONLY treatment, you should try multiple things. Since he has proctitis, he should probably be on rectal meds. I just started using my rectal meds again after months of not taking them and they have been helping me incredibly. Let's face it, it is hard to have a positive outlook when you're running to the toilet 15x a day. I don't even know what to say because my life is currently being compromised by this flare and I don't feel like there is much I can do to get my mind off the negative. I am forutnate because I have a laid back job and home life and my interests mostly consist of movies and creative things, a lot of stuff I can do at home. It is nice to work on a project and get your mind off your illness.

Pay attention to the effects of food on him. Maybe even keep a journal... Many of us have problems with lactose. I personally can't handle corn, many can't handle gluten and sugar. You could look into different diets like SCD (specific carbohydrate diet)/low residue. You never know what will help you. If you think his situation is bacterial, get stool tests so they can put him on medication to clear it up. My GI said usually if it sticks around for a long time, it's not bacterial. Practice stress relief techniques. I've learned not to sweat the little stuff. I don't care to argue with people anymore or get worked up over things that don't matter. I can't put myself around people/situations that stress me out. It is too physically draining.

Wish I could offer you better advice. There are so many wonderful people here who have a lot more experience with IBD.


Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


helplessmother
New Member


Date Joined Jan 2009
Total Posts : 15
   Posted 1/11/2009 10:11 AM (GMT -6)   
did i forget to mention stubborn 21 year old male. Thank you for all your advice. We did go for another opinion and they recommended 6mp. Then my son went back to his doctor, and he said he wouldn't recommend it. So then my son got all confused. He's a ball of stress. He's a hot headed polish/french man who probably needed shots at birth. hahahaha He just doesn't listen to reason. Its his age, his personality and his denial. Its only going to hurt him. This is where the helplessness really sets in. thanks again. Its embarrassing for him and he can't deal with it. he's going back to school this month, (for education and medical insurance) Cobra was costing me a fortune. I just hope to got he can go to school. Of course he needs to speak to his advisors and counselor to let them know he may have some difficult times. but, again, its difficult for him to talk about. and when I do it, he gets mad and me. thanks for listening. I know you can only tell me, what everone else does, he's responsible for his body and the only one who can help him, mostly, is him.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 1/11/2009 11:00 AM (GMT -6)   
There are some people here on 6MP who have been successful. I personally wouldn't rule out any treatment option, including surgery. I am trying to keep my mediations to a minimum. Has he tried any 5 ASA treatments or rectal medications? It seems like most people have the most luck with prednisone from what I see. I am trying to avoid taking it but if I don't continue to improve, it is not out of the question for me. I consider myself fortunate that I made it through my college years without having this to worry about. I have to admit, it doesn't get easier though. I have the same problems at work that he will have at school. I don't know how I could sit through a day of classes worried about when the urge will come. I know sometimes at work it comes at the most inopportune times but at least at work I can go to the bathroom without disrupting a class. It is also hard when you graduate because you will go through periods with no insurance and you NEED these medications to function. Sometimes I feel like I disabled person. I used to always joke with my boyfriend that maybe this time it would kill me and he jokes back and says "It probably won't so don't bet on it". I know we are twisted but for some reason when he says that it makes me laugh because instead of saying how I shouldn't say that he turns it around and says the truth. It probably won't kill me so if my plan is to drop dead in a few years, I can't bet on it and I better keep focused on my life and the things I want to accomplish instead of expecting the worst and using it as an excuse to sit here and do nothing. It is nice that you guys are open with eachother. I don't tell my family because they get too worried. They think I am fine. Hopefully I don't end up in the hospital any time soon with no insurance or they will have some bad news coming to them. smilewinkgrin I think it is nice that you try to help him talk about these things. One day he will be very appreciative that you are so understanding.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/11/2009 11:53 AM (GMT -6)   
Have they determined that the c. diff is truly gone? It can be stubborn, and sometimes has to be re-treated.

If your son isn't on a good probiotic, he should be - and a hefty dose. VSL#3 has been clinically shown to help in a large percentage of UC patients. Others that people here have found success with include Culturelle and Primadophilus Reuteri. Probiotic will help replace the normal healthy bacteria in the colon and can help prevent colonization by "bad" bacteria such as c. diff.

There really is no one drug that works for all of us, and for some people no medication works sufficiently well. These folks may opt for surgery, and almost always find their quality of life vastly improved. So it isn't nearly the horrible thing we initially think.

Hope he finds relief soon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 1/11/2009 12:03 PM (GMT -6)   
I was going to say the same as Judy about the c.diff. Do you know for sure that it's gone? It's often very hard to get rid of, it often takes me 2-3 months and Vancomycin is the only antibiotic that works for me. I'm really sorry that your son is having such a hard time. It really is a horrible disease and all of the meds. and symptoms can be so confusing.
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 1/11/2009 12:17 PM (GMT -6)   
I got UC at age 20....went through some very tough mental denial....very hard disease for a guy in his early 20's ready to hit the social scene, college, work, etc.... My UC was fairly bad at first....I was not hospitalized, but it was rough. I was on a lot of prednisone and Sulfa (at the time was best option). Prednisone is not healthy....but is possibly worth a mass dose for a while to see if it gets rid of the inflammation.....I am currently on 40mg....it is working.... He is young and it may be worth a shot... There are other treatments such as Remicade, Immuran, etc... Unfortunately due to medical reasons (tumor removed from my pituitary) I am unable to take them....so I am stuck with the old-school stuff.... It works for now.....

I had people tell me I needed surgery... I did not go down that path....and will not until there are no options. Personally (this is my opinion and how I feel) - I think having surgery at his age would be very mentally challenging for him. He is young and could possibly fight it with all options for a while. Again - my opinion and I do not want to hurt anyone elses feelings who have had surgery....

I went through college, work, and now run my own business.... it was extremely hard...and still is....but it can be done....it makes you find some serious inner strength that you had no idea was there.
34 yr old male. UC for 14 years. Started left-sided, most recent scope shows pancolitis. 40mg pred (as of 12/16/08), 12 pills Asacol per day, 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics, Multivitamin. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!) "I poop in the woods because I can"


helplessmother
New Member


Date Joined Jan 2009
Total Posts : 15
   Posted 1/11/2009 12:49 PM (GMT -6)   
blush  thank you all for your suppport and sharing your life with me.

Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 1/12/2009 8:37 AM (GMT -6)   
My thoughts are with you. I feel like your log in name could easily be mind. Keep trying to learn thru this site. The other posters have given you good advice. If the c-diff can get "fixed", it may eliminate his symptoms completely. I know of such a case, and he is now perfectly fine---it took awhile. Perhaps a school counselor should get a head's up from you. It would help him to not keep this inside---does he have a good friend that he could share this with? I had to get a 504 plan for my daughter, so that she was entitled to go to the bathroom without a note, and make up work when she misses it. She is in high school though, where the rules are tougher. She has turned this into a learning experience for her school by the project she has chosen. Teaching it during Health class, using the Crohns and Colitis Foundation has her holiday charity, etc. I think it is easier to be a girl--we already suffer indignities with the body....haha He is lucky to have you. Don't give up on him, some of what you say might actually stick. He will hear your voice in his head and perhaps do the right things for his body when you are not there. Encourage you to see specialist though, this disease must be managed carefully and frequently. Still lots to try---good luck
Daughter,15 diagnosed 1-08 w/ UC .
Asacol, Prevacid, Flagyl, Prednisone 50mg, major flare, now off!, Hosp. four x this yr. Low residue diet still, an
6MP, Colazal ,horrible acne/moon for awhile- No more Pred,but 6mp isn't working. Cortifoam enemas 4xweek
Trying probiotics, Niferex, fish oil, and Mangosteen for kicks.
update:
Had 4th infusion of Remicade(12-08), and still on all of the other drugs, except Flagyl and Pred. Better, no remission. In a drug trial for children. Living on a flare's edge.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 1/12/2009 10:26 AM (GMT -6)   
Does your son's college have a student disability services? He should register with them and they can help him with housing, scheduling, talking to professors, and any other adjustments.

I think you need to find a caring and competent GI. Why was Humira tried before 6MP and Remicade? 6MP can take a few months to start working and Remicade can take 4-5 infusions to start working. Humira is usually the last drug before surgery. If Humira has stopped working, you may want to get a consult with a surgeon; surgery is no easy task but it has over a 90% success rate.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 10 mg Prozac, VSL #3
 


cra43
Regular Member


Date Joined May 2008
Total Posts : 172
   Posted 1/12/2009 10:38 AM (GMT -6)   
Dear helpless mom.... I can relate to you 100% because I have been in your shoes with my son who is 41 and now lives back at home. I worry myself sick and know what you mean. The only thing that helped my son was high intial dose of Prednisone 60mg and that healed it up pretty fast, then he went on Asacol, and 6MP. His pain and bleeding stopped but he still had frequent loose movements,, 6 to 8 times a day. Now he is doing the Remicade. Takes his 3rd infusion Friday. By the way, he is Polish and Hungarian descent. I'm the Polish mother.. :-) He, like your son, don't like to talk about it either and gets annoyed at me for fussing over him.
But being on this board has helped me a whole lot with good info.
He has no insurance and pays a lot of money out for meds. And like your son, gets very very depressed and says the same thing, like, he wished he could just die already. I feel very bad and helpless to help. So, know for sure you have one mom here that knows exactly what you're going through. Good luck. Caring mom too

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/12/2009 11:17 AM (GMT -6)   
I remember when I used to think "I couldn't get something that will kill me and put me out of my misery. Oh, no, I get something that just makes me sicker and sicker but will never kill me." Depression is extremely common in people with chronic disease, and it's a lot harder for men, in general, because of rule #1:
Guys don't talk about their problems
and rule #2:
Guys don't even like to think about having diseases that make them "weak" and embarrass them

One thing to remember is that we all seem to agree stress plays a large part in our symptoms. So, hard as it is, you may want to not try to get your sons to talk to you about it (they may see it as intrusive) or to take care of them too much (they see it as "smothering".) Unfortunately, we all have to make our own way, our own decisions and our own mistakes.

Educating yourselves about the disease can only help, too.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


helplessmother
New Member


Date Joined Jan 2009
Total Posts : 15
   Posted 1/18/2009 5:09 PM (GMT -6)   
ITS C-Diff.  Thank you all.  It took freaking three weeks buy finally his doctor sent him for stool samples.  I don't know why he didn't do it sooner to rule it out.  The last time he had it was May.  Can it stay in your system that long and linger?  He hasn't taken an antibiotic since July for Cat Scratch Fever,  Can you stand it.  How the hell does that happen, but he was around a kitten before that.  lord have mercy.  you might as well just put yourself into a bubble.  he's on vanco now and hopefully will start to feel some relief soon.  its only been a couple of days.  its so frustrating waiting for diagnosis's from doctors.  I know my sons not there only patient, but a week earlier and he wouldn't of deteriorated so badly.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 1/18/2009 9:55 PM (GMT -6)   
That is great news! I hope the vancomyacin wipes out his illness. A few people here have had C-diff and can probably give you advice on what to expect.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)

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