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heathd
Regular Member


Date Joined Sep 2008
Total Posts : 40
   Posted 9/14/2008 7:27 PM (GMT -6)   
Hi. Im new to the board so i guess i figured i would explain a little about myself than about UC and my treatments so far. Im a 33 year old male from the midwest diagnosed with UC for 4 years now. Married with 3 children working as a diesal mechanic for a proffession. Ive had alot of trouble with my UC i guess you could say becouse of my male ego. I have a very loving wife of 15 years who is trying to cope with my disease with me and i believe we do so well. My kids are all in the early teens so i get lots of stress LOL. about 4 years ago i was hospitalized with bloody diahrea BM (also anemic at the time) lots of painful cramping that would double me over in pain and lots of gas. It turns out that my mother and her siblings as well as her mother and father all have UC. I have 2 sisters both of which have UC as well as a younger brother (who doesnt appear to have UC or he denies it much like i did in the beginning). My mother is treated with Sulfasalazine and both of my sisters are treated with Asacol. I guess it just wasnt something we brought up around the dinner table much so i never thought to ask or talk much about the problems i was having with my bowels. Anyway back to the first time i was hospitalized i was in the hospital for 4 weeks, during which i was seen by a surgeon who decided that my colon was in very bad shape i had alot of scarring and the lining was very thin. Because of all the pain meds and such during my stay in the hospital the first time i have to go off my wifes memory of everything. The surgeon and my current GI doc decided that there was several medicines that we should try during my stay. The first was Asacol and Rowasa Enemas which i believe only made the bloody and loose BM and cramping and gas worse. They tried me next on i believe imuran i think is what its called but i almost immediatly went in pancreatis. That counted for about a week of my stay in the hospital. Finally they decided that there was only 1 option left besides surgery (which to this day im deathly scared of, i guess partially becouse of my male ego and partly becouse of it being so final). Remicade. I was immediatly given an infusion and within a cpl of days my UC appeared to have gone away. I have been on Remicade until recently 1 treatment every 8 weeks. October of 07 it finally quiet working. At first i noticed that after about a year every dose didnt seem to keep my Uc in remission so they upped the dosage and finally moved the treatment to every 6 weeks. Finally i was told that it just wasnt working anymore and that my body had built up antibodies or an immunitiey to it at least thats the best way i can explain it. I was hopsitalized 2 more times since Oct 07 for my Uc. The first time my colon had inflammed outwards and ther second time my colon had inflammed inwards causing me to have blockages and puke bile. Im sure they have a more scientific term for it but im a very simple person so i explain things in the simplest terms i can. In January my insurance changed and i was forced to switch GI doctors, unfortunatly it took me 2 months to get in to see my GI doctor before which i had another severe flare up with my colon swelling inwards and causing me to have blockages again this time in the lower part of my colon instead of the middle part as was the last cpl times. I was dehydrated anemic and severe cramping bloating bleeding uncontrolled diahrea BMs and pain. He treated me with steroids because my chart said everything else had been tried. Ive been on Prednisone since october of last year 40 mgs a day. I have alot of problems with seeing as the steroids make my eyesight horrible. I was released after 2 weeks because of infection in my colon and the inflamation dehydration and anemic. i have been off work due to being hospitalized and not being able to see since than. 2 weeks ago i was readmitted in the hospitle once again dehydrated and anemic with another infection in my colon this time in the lower anus and lower colon. During the time i have been off work due to my flare up i was given i belive Canasa suppositories and Hydrocortisone enemas. Both of which made the diahrea and the loose BM worse (at least thats the way i felt about it) it got so bad that before my last visit to the hospital when i went to use the enmas or suppositories i couldnt hold them in and got nothing but blood  almsot immediatly which is why i believe how i got dehydrated again and anemic. This last trip to the hospital i spent almost 2 weeks in and was released on 9/12/08. Unfortunatly once again they introduced me to another surgeon who has given me the option of doing the surgery. They are hesitant of the surgery becouse at the moment its only the rectum and lower colon that is affected however i was told that when (not if) the surgery is done it will be the whole colon and rectum due to that my UC moves around so much and isnt affected by just one part of the colon. I beleive that i made a mistake while i was last hospitalized thoufgh becouse of all the pain medicine they was giving me i believe now i am having withdrawel symptoms from it as i awake often sweating running a fever and with my limbs seeming to be very restless making it very hard to sleep. I apologize if i skip around a bit here and there during this posting. Anyway back to my release. They started me on 6 pills 2 times a day of Sulfasalazine i still take 40 mgs prednisone a day i take prilosec once a day i take a nerveouseness med called Ativan and had been taken a pain med called Tramadol and i have been given the oppurtunity to try in another bio drug called Humira. I have been given 6 months as a trial to see the effectiveness of this drug on UC as it is FDA approved for Chrohns and not UC. As i have been off work (luckily for me i have a long term disability plan through my emplyer so financially im not so bad off but) my body has taken a beaten for being off for so long and not really doing much. It now takes me a long time to do anything from walking down the stairs to taking a shower. I had trouble with shortness of breath since around the first time i was hospitalized this year. I guess that about sums up everything so far. I had a few questions i wanted to ask and i guess its becouse of my male ego or whatever i figured i would try this forum to hopefully tell people about my experiences and to hopefully get answers to things i may be afraid to ask. Okay i guess i should start with the questions.
 
1 With the sulfasalazine a couple questions about side effects. I still have uncontrolled seemingly random BMs but the bloody stool has gone away. I have anxiouseness especially when i try to sleep (this could also be becouse i believe my body is worn out but my mind is not) I get alot of gas but i believe this has to do with stress because when i go through things like with my kids fighting with each other and such it gets alot worse. And the thing i have noticed worse is that i get indigestion or heartburn bad since i started taking it especially it feels like i have to burp all the time. Are these actually side effects or does the Sulfa actually seem to be working since i have only been on it for a little over a week. Is it in my head or becouse of other problems especially since i havnt been on it for long. If anyone can also tell me of some of their side effects from this drug i wouild appreciate it. I imagine there are alot but im kinda in the frame of mind that i dont know what is working and what isnt. How long does it usually take for this drug to start functioning fully i read somewhere that it could take upwards of 3 mnths to feel the full effects and will the side effects if these are from the sulfa go away?
 
2 Humira has anyone else started taking this as a med for UC and if so what has been your experiences. I kinda feel alone on this as ther isnt alot of information that i have been able to find on the internet about it and UC.
 
3 They had me on 2 MG i believe of Dilata i think is what it was called every 2 hrs in the hospital now i take Hydrocodone every 4 hrs as needed for the pain. the pain meds really slow down the urge to go to the bathroom as well and that may be what im afraid of is that the other meds aint working and that the pain meds are only masking their inefficiency to work.
 
Like i said i apologize if i rattle off and on about things and if i didnt explain myself so well on things. My wife is a very caring and understanding person but we have been argueing alot over the surgery. I really want something to work and i dont know if the side effects are things that are common are reactions or if they could be from other things. To be honest i feel a bit overwhelmed on things and i wish life would go back to normal if it was ever normal. Im scared to death either becouse of my male ego or whatever that if i do have the surgery that my wife will think me disgusting or something. Im scared that the sulfa and humira will do something very bad to my body or kill me. Anyway sorry to be melodramatic its late and ive found that i get emotional so i apologize if anything ive said didnt come out right. If anyone can give me any advice or just want to talk about some of your past experiences with this just reply and ill try to respond tomorrow. I guess i just wanted to talk to people about it.  Thanks for reading even if you dont respond
 
sincerely heathd

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/14/2008 8:04 PM (GMT -6)   
Heathd, welcome to HealingWell. I'm really sorry you're having such a difficult time. Please don't feel you need to apologize; we've all been through rough times with this disease and we understand. Everyone handles it a little differently, and whatever works for you is good.

Your difficulty with sleeping and indigestion may be due to the steroids. They are classic side effects of steroid drugs.

I've not taken sulfasalazine, but I know you need to give any new medication at least two to three weeks to work. The blood has cleared up, which is progress. Even if your medication is working, it takes time for your colon to heal and some of the other symptoms to go away.

I'm still having success with Remicade. Humira is a newer drug, not yet FDA-approved for UC but in late clinical trials. We do have some people here who are taking it. Like every other treatment, it works for some but not others. Probably worth a try if your insurance will cover it, as it is very expensive.

As far as harm to your body, sulfasalazine is relatively low on side effects. Humira has some ugly ones that don't occur often. The drug you might want to worry about is the steroid. Taken over the long term, it can have horrible side effects: cataracts, bone disolving, osteoporosis, stomach ulcers and a lot of others. If you're unable to get off the steroids, surgery may be something to investigate. At this point it sounds like it could only improve your quality of life.
Judy - Southern US 
 
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.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


heathd
Regular Member


Date Joined Sep 2008
Total Posts : 40
   Posted 9/16/2008 6:16 PM (GMT -6)   
was curiouse about something the urge for a BM does fiber supplememnts such as Metamucil do they help to slow this down or speed it up? also is it good to slow this down. as it is i feel the urge for a BM probably 10 times a day ussually after i stand up( i have been off work for over 7 weeks and hopefully going back monday less than a week away) i find that after i have been sitting for awhile than i stand up i get the urge to go bad. Probiiotics do they slow down or speed up the BM process. I got thrush yesterday im guessing from the steroids from what research i have done, but the drug nystatin is what my dr prescribed for me does anyone know thrush or the medicine to get rid of it, affects my BMs or if im just going alot still while waiting for the humira and sulfasalazine to start working. thanks in advance for any help

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 9/16/2008 6:35 PM (GMT -6)   
I have to agree with Judilyn about the difficulty sleeping and indigestion probably being caused by the steroids. They can really wreak havoc. I have been lucky enough to not experience any side effects with the sulfasalazine. You will need to give the sulfasalazine a longer period of time to see if it will work for you. It sounds like maybe it is giving you some improvement. Are you also taking folic acid along with the sulfasalazine? Normally, they are prescribed together. Good Luck, I hope you see alot of improvment soon.
*******Donna*******
 
South of Boston, Ma
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin 5000mcg, Fibercon.
 


heathd
Regular Member


Date Joined Sep 2008
Total Posts : 40
   Posted 9/16/2008 7:10 PM (GMT -6)   
was curiouse also since im having alot of BMs i bought pedialite to drink to try to keep fluids in my body could that have caused a upwards of BMs?

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 9/17/2008 9:11 AM (GMT -6)   
So sorry to hear of your problems heath.  Ask your doctor about Nexium.  I had to take that while taking the prednisone.  This prevents ulcers from forming in your stomach.  From what you say, that may have happened already.  You do sound like a prime candidate for surgery though.
 
I've had UC, primarily proctitis since 1998.  I was diagnosed at age 52, relatively old onset, thank God.  During the past ten years I've had several flares.  The last one started in April, I was hospitalized for ten days in May and still not completely out of this flare.  Hasn't your doctor suggested a taper for the prednisone?  Seems to me they set a certain time limit for dosages, at least my doctor does.  He hates me taking steroids, but they seem to be the only thing that gets this condition under control.  I refuse Remicade basically because I was exposed to the TB virus back in the 60's when I worked in a hospital lab.  Remicade can reactivate the TB virus and it can actually have fatal results with this.  Humira is something similar to Remicade.  I am currently down to 5 mgm of prednisone (and yes, this plays havoc with your system...sleeplessness, feelings of anxiety, etc), 50 mgm of 6MP, 9 capsules of Colazal daily, Cort enemas alternate with Canasa suppositories nightly.  I also have high blood pressure, to which the prednisone contributes and I take Benicar and Toprol xl for that.  In addition I am taking Power-dophilus (probiotic), multivitamin, fish oil capsule, flaxseed oil capsule and calcium.  Lots of pills to swallow.  Hope my daughter never gets this, she has trouble swallowing pills..lol.
 
I might add, try a low residue diet while suffering like this and stick to it.  I find that fiber actually aggravates my condition.  Were you on a PIC line (fed by IV) in the hospital to give your colon a complete rest?  My doctor had me on it.  Let me know how you are doing.  I feel really bad for you.

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 9/18/2008 5:40 PM (GMT -6)   
Pedialyte is a good choice to help replace electrolytes lost through frequent BMs. It does not have as much sugar as sports drinks. I wouldn't think it would cause an increase in BMs. However, this disease is very individual and some people are effected by different things.

Probiotics are good. They may initially increase gas and BMs until your body gets used to them. A week or two (if you've been flaring a long time) and things should settle down.

Is the Nystatin you are using an oral mouth wash or a pill? You can check www.rxlist.com for side effects.

Fiber will usually bulk up stools. I hesitate to use it while bleeding, but have not had many problems with Fibercon.

Have you tried a food journal? Writing down everything you eat, drink, etc and then the symptoms you have after to look for a correlation? You may need to start with a bland, basic, low residue diet for several days and then slowly add foods in one a day or every two days .

I hope you find relief soon!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next infusion: 10/07/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate

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