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2Jimmy
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Reged: 12/11/06
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Posts: 15
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Loc: Waterloo, Ontario
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looking for help with my colitus
#293242 - 12/11/06 07:13 PM
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Hey all, I was recently diagnosed with ulcerative colitus in August after loosing 35 lbs! I was hospitalized and given 4 blood transfusions to get my hemoglobin back up (down to 52 pts...not good). I was placed on Salofalk which stopped the diarreha but not the passing of blood. In September Pantaloc was also added to control the bleeding. Well, it didn't work for more than 2 days without passing, my Dr. placed me on prednisone last Tuesday to try and shock my system into remission. Since last Tuesday I have not stopped passing blood at every bowl movement,I'm getting concerned as this has not happened to this extent yet.
I've been taking calcium supplements as well as iron pills, vitamin D, C, multi's as well.
I've had concerns with breathing and catching my breath the last two weeks at different times. The specialist thinks it may be the start of blood clotting as colitus or the medication makes blood thicker.
Just looking for some feedback, any and all would be appreciated in moving forward with control.
Thank-you,
Jimmy
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mindyj
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Reged: 05/14/04
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Posts: 494
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Loc: Northern Virginia
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Hi Jimmy,
I havn't posted here in months, but just checked in today and saw no one's answered your post, and it looks like things are pretty bad, so I will offer what little feedback I may have. My first questions, does your doctor know about the supplements you are taking? Calcium and iron both can be very hard on digestion and may be making the diahrrea worse. I know that we need iron sometimes with anemia type issues, especially relevant since you've had transfusions in the past. But you should be consulting with your doctor on supplementing (if you arn't already) to make sure you're using the best regiment. As for the prednisone, alot of us, unfortunately, get to that step and I'm not surprised the salofak wasn't enough. What the dosage of prednisone? Are you starting high and tapering or will you taper up as well? If you start lower, it may not be till you get to the higher dose that you have results. Since I have CD I have less experience for what's the next step after prednisone, but it should be something you could discuss with your doctor. I know that remicade for UC is still an expirminental thing. You should ask about immunosuppressants though. They tend to be a more long term theropy, but they've worked wonders for me and I know people with UC who've had success with them as well. Ask about imuran and MP5. Good luck and I trully hope things get better soon.
Min
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kim123
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Reged: 07/18/06
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Posts: 535
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Loc: Florida
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Have you tried an antifungal diet? I, as well as others, have gotten better following an antifungal plan. Cause/effect.
Here's an interesting read...
http://www.healthe-livingnews.com/articles/fungal_etiology_of_inflammatory_bowel_disease.html
Take care,
Kim
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Drop taking the oral iron tables. They will cause you more problems than they solve. If you are severely aneamic then it's best to get IV iron. It doesn't tear up your colon when you take it that way. Vitamin C will increase absorption of iron but it also excasserbates the problem with taking oral iron.
Blood clotting is not the problem usually with UC. It's the damaged colon lining that's causing the bleeding. Your best bet is to rebuild the mucus barrier first. If you can tolerate it start taking very small amounts of psyllium husk. Take tumeric tablets 3 times a day plus resveratrol tablets and a 5 lox inhibitor. You'll find that taking supplements with silicon in them or micro crystalline cellulose will cause you problems so read your labels for fillers. Eventually you'll want to look into doing phosphatidylcholine enemas. Read and study up on what I've recommended.
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2Jimmy
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Reged: 12/11/06
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Posts: 15
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Loc: Waterloo, Ontario
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Thanks for the feedback folks. Well, the very next day after my first post i found myself in the hospital with breathing and chest pains. i felt as i did back when i was first diagnosed and thought for sure i was in need of another trasfusion. 
After a series of blood tests and examinations by the ER doc and Gastoenterologist on staff it was determined i was having an axiety attack. All blood work came back okay so they decided to increase my dosage of prenazone from 8 to 12 pills per day. That was last Tuesday.
Immedidately after the increase in dosage i stopped passing blood for 12 hrs, i though "FINALY!!" Then is started again....
i have an appointment tomorrow with my Gastro doc to review the issue of continued passing. The ER docs recommended that I come back to the hospital for intravenously fed prednazoid treatment to shock my system. Not sure what the go forward is.
Yes, my doctors know all that I'm on, they suggested that as i was having issues with my knees (pain lasting everyday up until the evening then disappaiting). I also went for a bone scan prior to prednazone, all appeared okay. Liver tests performed last week as well, all okay.
i will pop another little blurb back in upon my return from teh doc tomorrrow.
Thanks all, much appreciated.
Jimmy
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2Jimmy
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Reged: 12/11/06
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Posts: 15
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Loc: Waterloo, Ontario
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ah, one more item. My wife works with a lady in chicago who has UC and been in remission since 1988. Her success to this she claims has been drinking cold pressed aloe vera juice, 2x 4oz per day. Anyone ever hear of that?
This can't be purchased in Canada, she is sending me a sample this week, willing to try anything.
Jim
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2Jimmy
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Reged: 12/11/06
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Posts: 15
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Loc: Waterloo, Ontario
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Hey gang...not been getting better...few more hospital visists and more blood work.
My speacialist changed me from salofalk 8/day to Apo-Azathioprine 50mg 1/day for the first week, after white blood count wanted me to go to 3/day....hospital lost or didn't forward him my test data on boxing day...family doctor received results on the 29th, only upped me to 2/day, wants specialist to confirm results upon his return from vacation on Jan 8th.....
Been on prednisone 5mg /12day for three weeks now, has not stopped the bleeding, specialist told me on the 28th that he wants to go forward with removal of my colon....I'm not ready for that...i've only been on meds since end of August. That I figure is that last resort, years down the road...not now...
Talked to a friend of mine two days ago, his friend suggested a Holisitic Dr. close to my home here in Waterloo, Ontario, Canada..called them up...this Dr. James Farquarhason. I spoke to his nurse on staff, she claims the good doctor specializes in issues with the colon and aids...apparently he goes to Africa every three months to volunteer his time and expertise...
I have a session with him on Jan2nd...the nurse indicates its a one hour session in which he will assess my situation and perscribe an alternate approach to my issue.
I'm afraid that my two doctor's will reject his claim and perhaps remove me from there patients list...but, this is a chance I have to take, the meds are not working and I'm very afraid of moving forward with surgery...too sudden and final....
Has anyone researched the findings of UC research/results in Europe, especially the UK? Success rates are very low, waiting times for doctors are insane....I can forward emails if anyone is interested.
Would love to hear some feedback from others on my above mentioned, positive, negative...just need some replies...
Well getting ready to bring in a NEW YEAR with my wife and daughters here (6/12yrs old)....just playing board games with there mom while I'm chatting....
All the best to everyone in 2007....please let there be a cure for us......
Jimmy
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vespa
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Reged: 01/02/07
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Posts: 1
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Hi jimmy happy new year to you and your family! I to suffer u/c, and was in remission up untill 2 days ago. my problem was coming off the prednisolone I was taking 40mg aday reducing by 5 a wk. I got down to 5mg then stopped, thats when it came back. Had to go back on them then i reduced the dosage by 1mg say every 2wks. In the end i stayed on 1mg for 6wks. along with other medication asacol suppositories, colazide. I begged the doctors to send me for a tolerance test which they dismissed as being helpful as i didnt have crohns, i paid for the test myself and had a all dairy, citrus and citric acid intolarance. This was march06, and im sure that had a lot to do with keeping it in remission. Its now slowly coming back. All i can say to you jimmy is keep on being positive, and i hope you have luck today. would be interesting to see what they say.
jayne
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2Jimmy
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Reged: 12/11/06
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Posts: 15
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Loc: Waterloo, Ontario
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Thank-you Jayne for the reply....here is an update.
This is a long one....beeen real interesting the last few days...
My wife and I have two beautiful girls, Shelby 12 and Dakota 6.. we couldn't have asked for any other better daughters..Tammy and I felt that they were growing up too fast for us..we had more to give to children period..so we decided last January to have another child (we really wanted a boy to "hang with Dad and Grandpa", but, it another girl..Fantastic!!
We tried all the methods of conception thought imaginable to man....So, unsuccessfuly we were not able to conceive..through research we thought that I had become sterile, either from this disease or all the meds I've been on. It was a real downer for the both of us, we stopped keeping track of Tammy's health and time...just let it go..i was done....
On New Years morning Tammy told me she was 6 weeks pregnant!!Tears of joy anxiety and pain all hit at the same time!! For my specialist just placed me on Apo-Azathioprine on December 19th and told me that I should not try to conceive!! Couple that with him placing me on prednisone on December 4th had us scared out of our wits!!
We went to our family doctor today to explain our situation, she informed us that we are okay...safe..beat it by a few days...whew!!!
We are on clound 9 here Tammy and I!!! Finaly a miracle! Something we have both wished for so long....
At this appointment today I told my doctor that my specialist wants to move forward with full colon removal..something I'm not ready for! I told her that I was going to visit Naturopath, she was acceptable of this decision, however did not agree with this path of treatment. I told her I wanted to be honest with her as I will be with my specialis next week, my fear is that they cut me from there patient list, she replied no worries, they would never do that!
On to my visit with the Naturopath...what a day so far and it's only 1:15 pm at that time...
Through a friend of a friend I called Dr. Jim Farquareson in Ayr, Ontario, Canada, specializes in colon disorders...Dr. Jim is such a friendly fellow...i spent 1 1/2 hours chatting with him...the prednisone is an issue, I have to get off it for him to help me to full potential..however he did tell me he can help me and send me into remission!!
I have started with this..he wants me to reduce prednisone by 50% tomorrow..12 pills to 6..
then take Nux Vomica..4 pellets/3times day
Chlorophyll 1/2tsp in water 3/day
Herbal GI 3/day
I'm to call him after one week for progess, he claims I will see results in 3-4 days, then he wants a follow up in 2 weeks, which is unusal, typically after first visit is 4 week follow up.
Perhaps the 30% mental part of fighting every disease is greater that that? I don't know, I'm really "pumped" been quite a day or year so far!!
Like I always say, keep smiling!! There are a lot of other people way off worse than me....and smiles are contagious!!
All the best to everyone, I look forward to replies positive of not..I'm always open to feedback!!
Thank-you!!
Jimmy
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suzyq
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Reged: 05/22/03
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Posts: 630
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Loc: Northern Ont. Canada
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Wow Jimmy with reading your new message today, I feel you are getting on with beating this colitis. Sorry but I've been just reading your messages but not contributing. Reason being wasn't sure what to say! Myself having protitis colits for the last 5-6 yrs have been struggling with the bleeding and cramping. My GI in Sudbury,Ont. (seeing you are from Ontario,and know where this is; as I have to travel 3 hrs. to get there) explained to me that he would definitley not remove the colon UNLESS it had to as a last resort! With saying this, we, he and I, have been trying different medications possible. I have been on,Asacol, Dipentum (tablet), Prednisone (which only took for about 6 weeks, noting it was not working for me, plus did not want any side effects to happen!!) also tried cortifoam enema(as proctitis is the bottom half of colon,and mine is now 4"s up my colon,considering it was 6"'s at one point) stopped that and tried Dipentum (tab) with Pentasa enema(note foam is much better to use). As of about 1 yr ago, I started on a new med. called Salofalk, tablet form. The protitis finally went into remission,yipee!!  Then of course for some unknown reason the bleeding started again. I put up with the many BM's , and cramping, but it's the bleeding that piss's me off more!! Tried doubling the Salofalk tab. and adding a Salofalk suppository.(no it does not make you have BM). This together slowed down the bleeding but not completely!! Went back and had again the endoscopy done. He said that the colitis is 4"s up the colon and still sees ulcers in there. As of today I am still on the Salofalk tabs. and introduced the Cortifoam back in place of the salofalk supp. as he seems to think it will reach the colon better. The only thing now is that I am still bleeding heavily,only when I have a BM and also have a protrusion happening!! I mentioned this to him and he says he can only look at this when the bleeding slows down or stops completely. I may be calling him in the next couple of weeks to make an appt. Sorry this is so long!! Could you please keep us updated with the Naturapath? And to let us know how you react to it? It would be very interesting knowing how it works out!! You sound so upbeat today...guess it helps you are going to be a new daddy! congratulations to you and your family! take care Sue
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