GI started talking about surgery for first time.

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Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 2/6/2008 3:25 AM (GMT -6)   
I was diagnosed in Nov' with UC. I was put on 40mg Pred and 8 x Pentasa and spent a week in hospital.
Whilst at home I tapered down as far as 10mg Pred', I was also taken off the Pentasa.
I continued to have bad urgency, having accidents, and going between 4 - 6 times / day with loads of wind, pain, D (maybe 1 in 3 loose solids), and, unfortunately, the majority of times are bloody or very bloody.

The GI put me back up to 25mg Pred on the 23rd Jan, then 30mg on the 28th Jan.
I was also put on 50mg Azathioprine on the 18th Jan, then 100mg on the 30th Jan and 150mg on the 5th Jan.

I was summoned up to see the GI yesterday (5th) as they were concerned that things were not improving.
The GI said I was to go up to 40mg Pred for a week, come back in on Tue 12th Jan and would almost certainly be admitted to hospital.
He reckons he will have to give me IV steroids to try and stop the bleeding and do another colonoscopy (nooooo!).
Then he said if that didn't work or, as he suspects, as I taper down the symptoms will come back, he may try Infliximab/Remicade.
If that didn't work then he said we'd have to start thinking about an operation as things were not good as they are.

Ahhhhh!!! No, that's not what I wanted to hear! They keep telling me how wonderfully positive I am and they're still hopeful the drugs may work, but underneath I'm terrified. The thought of surgery just fills me with dread. Basically I've got a week on the 40mg pred to miraculously improve or I'm back into hospital.
Please, keep your fingers crossed for me for this week to get better,
thanks.
Diagnosed Indeterminate Colitis 25/11/2007 (update: told by consultant 15/01/08 in his opinion definitely UC). 1 x Solofalk Enema/day 40mg Prednisolone 35mg Prednisolone 30mg Prednisolone 20mg Prednisolone 25mg Prednisolone 20mg Prednisolone 15mg Prednisolone 4g Pentasa/day

Now on 150mg Azathioprine/Imuran, back up to 40mg Prednisolone, Omeprazole 20mg, 2 x Calcium Adcal D3


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/6/2008 5:58 AM (GMT -6)   
:( I'm so sorry to hear about the horrible troubles you've been having! But some people are not so lucky when it comes to this DD - they can have a particuliarly aggressive form. If it comes down to you having surgery, of course it would terrify you! That is a major surgery, however, you have to look at it like this too - if you don't have your large intestine, you don't have your disease and you can get your life back. It's not a pleasant thought, nor experience from what I understand but try not to worry about that until the time comes. I hope if you do have to go on Remicade that it can kick it to the curb and then you won't have to worry about surgery any time soon.


 @--->--SHERRY--<---@
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~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Singulair
~Secondary Reynauds Syndrome -'04 - Norvasc~Fibromyalgia -'06~No meds
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Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 2/6/2008 6:02 AM (GMT -6)   
Thanks for that Red. If anyone has been in a similar situation, but found the drugs did eventually work, I would love to hear from them as well,
thanks again.
Diagnosed Indeterminate Colitis 25/11/2007 (update: told by consultant 15/01/08 in his opinion definitely UC). 1 x Solofalk Enema/day 40mg Prednisolone 35mg Prednisolone 30mg Prednisolone 20mg Prednisolone 25mg Prednisolone 20mg Prednisolone 15mg Prednisolone 4g Pentasa/day

Now on 150mg Azathioprine/Imuran, back up to 40mg Prednisolone, Omeprazole 20mg, 2 x Calcium Adcal D3


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 2/6/2008 6:46 AM (GMT -6)   
I am keeping my fingers crossed for you.
 
 
Dx:  UC Proctitis 2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 
Added: tumeric and probiotics.
 
 


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 2/6/2008 7:42 AM (GMT -6)   
Hello, I have been on Remicade for about 5 years. It is a wonderful drug. I have Crohn's. Just thought I would let you now. I am also in remission do to being on Remicade.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/6/2008 8:00 AM (GMT -6)   
Cammy, I was in one level or another of flare from the summer of 2001 until the spring of 2006. I was in the bathroom 10-25 times a day, constant bleeding and pain. Meds - my doc tried them all, with no remission. In March 2006 I started Remicade infusions. I've now been in remission since April 2006. If you need to go to Remicade, I hope it works as well for you as it has for me.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 2/6/2008 8:02 AM (GMT -6)   
Cheers. Judy, did you're GI discuss surgery with you during all that?
Diagnosed Indeterminate Colitis 25/11/2007 (update: told by consultant 15/01/08 in his opinion definitely UC). 1 x Solofalk Enema/day 40mg Prednisolone 35mg Prednisolone 30mg Prednisolone 20mg Prednisolone 25mg Prednisolone 20mg Prednisolone 15mg Prednisolone 4g Pentasa/day

Now on 150mg Azathioprine/Imuran, back up to 40mg Prednisolone, Omeprazole 20mg, 2 x Calcium Adcal D3


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 2/6/2008 8:12 AM (GMT -6)   
Hi Cammy,

My GI recently brought that up to me as well and I nearly fell off the exam table, I was like, whoa.....I don't even want to consider that. It's scary that there are so few options out there and I was terrified for a couple of weeks too.

The prednisone took a couple of months to start working for me at 60mg a day (I got worse after starting it - though I had to stop the Asacol so that is part of it, but still...) I went on Azathioprine Oct 16 and have been on it for 3 mos now, also hydrocortisone enemas really helped sort me out and they put me on cipro as well. Now I have 1-2 bm's a day, no blood, urgency is minimal but my stools are still stringy and not completely normal (i'll take it).

There are other options still, I hope they are able to get the right combo of meds to help you. Try to stay positive, ez to say, I know....
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 2/6/2008 8:17 AM (GMT -6)   
The different treatment levels/dosages/criteria GI's use is rather confusing. My one seems very much against the pred' and spoke a lot about how I had been on it for a long time and he really didn't want to keep me on it/keep giving me more.
Also, here, they only give you more than 40mg by IV drip in hospital, I'm surprised you were on 60mg a day for 2 months.
We're all at their mercy really, though I do trust mine.
Diagnosed Indeterminate Colitis 25/11/2007 (update: told by consultant 15/01/08 in his opinion definitely UC). 1 x Solofalk Enema/day 40mg Prednisolone 35mg Prednisolone 30mg Prednisolone 20mg Prednisolone 25mg Prednisolone 20mg Prednisolone 15mg Prednisolone 4g Pentasa/day

Now on 150mg Azathioprine/Imuran, back up to 40mg Prednisolone, Omeprazole 20mg, 2 x Calcium Adcal D3


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/6/2008 8:32 AM (GMT -6)   
I would keep the doctor that told you that you should not stay on prednisone longer, he is very wise. Prednisone is not to be taken long term for treatment of UC. Have you tried Remicade? If you don't want surgery Remicade would be your next treatment option.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 2/6/2008 8:34 AM (GMT -6)   
Only been on the Azathioprine for a couple of weeks so he was kind of pinning his hopes on that working (as am I!), but he thought Remicade would be next if that doesn't work.
Diagnosed Indeterminate Colitis 25/11/2007 (update: told by consultant 15/01/08 in his opinion definitely UC). 1 x Solofalk Enema/day 40mg Prednisolone 35mg Prednisolone 30mg Prednisolone 20mg Prednisolone 25mg Prednisolone 20mg Prednisolone 15mg Prednisolone 4g Pentasa/day

Now on 150mg Azathioprine/Imuran, back up to 40mg Prednisolone, Omeprazole 20mg, 2 x Calcium Adcal D3


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 2/6/2008 8:43 AM (GMT -6)   
Hi ScottishCammy, I too was very sick when I started Remicade and that was over two years ago. I'm doing really well and considered to be in Remi remission. And yes, the "surgery" was discussed with me too! The best part is that I know it's an option for me, and that if down the road I the surgery, so many folks have had such success with it, I know I'll be fine. Take care.

Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 2/6/2008 8:46 AM (GMT -6)   
Out of interest, do you taper down the Remicade? I'm just wondering what happens if you stop taking it? In other words, is it a temporary solution, or could it get you into remission and then you stay on azathioprine, or.....what, LOL!-:)
Diagnosed Indeterminate Colitis 25/11/2007 (update: told by consultant 15/01/08 in his opinion definitely UC). 1 x Solofalk Enema/day 40mg Prednisolone 35mg Prednisolone 30mg Prednisolone 20mg Prednisolone 25mg Prednisolone 20mg Prednisolone 15mg Prednisolone 4g Pentasa/day

Now on 150mg Azathioprine/Imuran, back up to 40mg Prednisolone, Omeprazole 20mg, 2 x Calcium Adcal D3


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 2/6/2008 9:03 AM (GMT -6)   
My GI didn't put me on Imuran and went straight to Remicade because he said it takes too long to see a change with Imuran, up to 3 months... you have only been on it since mid January, right? (I think you accidently put Jan instead of Feb on your post when you said they raised it to 150 mg 5 of Jan, also that you may have a colonoscopy 12th of Jan?? you could edit it if it is wrong.) Anyways, I would think that giving the Imuran more of a chance would be wise, since you are on Prednisone as well you may be able to hang on and wait and see if the Imuran kicks in. I am not a doctor by any means and I do not know the extent of your UC, but it seems like your doctor is jumping the gun a little. It just seems awfully soon to consider surgery being diagnosed only a few months ago... Now that I think of it, my GI has been mentioning surgery to me for years. Sometimes I regret I didn't do it the first time he told me I should, I wouldn't have wasted so much time in the bathroom and in pain and feeling so horrible... But I keep hanging on in hopes of a breakthrough in medication or a miracle of remission. Looking back, I really don't regret not having the surgery yet. Things have been tough here and there but I still have hope that I will make it without surgery. And if I don't, so be it. Have you tried making a food diary and probiotics and things like that? Try not to worry too much about everything, you will be ok. Don 't make yourself worse by stressing about this. Take care of youself the best you can, get lots of rest, and try to relax. Worrying too much really can make it worse. Oh, and Remicade works pretty well for a lot of people so keep that in mind. :)
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 2/6/2008 9:08 AM (GMT -6)   
A couple of things in your post jumped out at me. First, you haven't been given a very high dose of pred. Even the 40 mg he's finally bumped you up to is still considered a moderate dose. For the state you're in, I'd think your doc would have started you out 60 mg at least. The next thing that seems puzzling to me is you were put on an immunosuppresant mid January, so you've only been on it about a month. From my understanding, immunosuppresant drugs can take up to three months (sometimes longer) to kick in, so you haven't been on it long enough to judge if it's working for you or not. And why were you taken off Pentasa? In most cases, UC patients are kept on some form of ASA as a maintenance drug, in addition to the steroids or immunosuppresants. Over all, it sounds like you're meds and dosages are all over the place. I would certainly get a second opinion before I took so drastic a step as surgery. There are a lot of lousy GIs out there. If you don't feel like you're getting the care you need, find another doctor.
Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 


Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 2/6/2008 9:09 AM (GMT -6)   
Hi, the consultant told me to go up to the 150mg azathioprine when I seen him yesterday (5th) and if/when I get admitted on the 12th he will want to do a colonoscopy as well.
I really just hope the drugs do the trick. Thanks.
Diagnosed Indeterminate Colitis 25/11/2007 (update: told by consultant 15/01/08 in his opinion definitely UC). 1 x Solofalk Enema/day 40mg Prednisolone 35mg Prednisolone 30mg Prednisolone 20mg Prednisolone 25mg Prednisolone 20mg Prednisolone 15mg Prednisolone 4g Pentasa/day

Now on 150mg Azathioprine/Imuran, back up to 40mg Prednisolone, Omeprazole 20mg, 2 x Calcium Adcal D3


Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 2/6/2008 9:13 AM (GMT -6)   
Princesa, he halved my dose of Pentasa in case my D/urgency was due to it. Things got worse and he took me off it as he felt it was the disease and the Pentasa wasn't doing anything. My azathioprine has been as follows:
50mg 18th Jan
100mg 30th Jan
150mg 5thn Feb
(I'm blaming the steroids for my typos!)
He did say he was pinning his hopes on the azathioprine, but that there wasn't much left after that.
The dosages seem to vary massively fro pred' from GI to GI.
Diagnosed Indeterminate Colitis 25/11/2007 (update: told by consultant 15/01/08 in his opinion definitely UC). 1 x Solofalk Enema/day 40mg Prednisolone 35mg Prednisolone 30mg Prednisolone 20mg Prednisolone 25mg Prednisolone 20mg Prednisolone 15mg Prednisolone 4g Pentasa/day

Now on 150mg Azathioprine/Imuran, back up to 40mg Prednisolone, Omeprazole 20mg, 2 x Calcium Adcal D3


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 2/6/2008 9:22 AM (GMT -6)   
So, if symptoms worsened after the dose was halved, it doesn't sound like you have a problem with ASAs. I don't understand why he took you off it.

Alot of GIs will use pred to try to get things under control until an immunosuppresant can kick in. But if you're in really bad shape, a lower dose of pred isn't going to help. Again, I would suggest you get a second opinion on your treatment.

You might also consider an enteral diet for a week or two to try to give your colon a chance to heal. Basically, it means going on a liquid, predigested diet. Studies have shown it to be as effective as steroids for bringing symptoms under control. Check out the book The IBD Remission Diet if you'd like to learn more.
Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/6/2008 3:58 PM (GMT -6)   
Sorry, Cammy, I just got home from work. My doctor kept saying "I'd hate to see you lose your colon over 21 cm. of inflammation." He never came out and said it, but I fully understood that at that time the Remicade was the last resort, and if it didn't work I'd either have to have surgery or learn to live with being so sick. I was also desparate to get off steroids because of the horrible effects I'd had.

Cammy, Remicade is nearly always used as a maintenance drug. If you start on it and then stop taking it, you may develop antibodies to the drug that won't allow you to go back on it if you need it. I get infusions every eight weeks; I once went ten weeks and I could tell my symptoms were starting to come back. So, chronic disease, chronic treatment.

Hope the Aza works for you so this is all moot in your case.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Lindy
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 2/6/2008 6:28 PM (GMT -6)   
Of course you can tell I'm a new member------I've read so much about infusion.  Exactly what is it?  It sounds very invasive & you have to go to the hospital to get it.  Is it an IV or is it put directly into your intestines?  I have an appt. with my doctor tomorrow & will ask many questions thanks to the many things I've read on this forum.  I'm just coming to the conclusion that I have to take charge of my health issues & not rely entirely on what my dr. does or does not tell me.  At the present time, I have experienced terrible flares, last nite being the worst as it lasted 5 hrs. & every hr. all nite long.  I feel that I have to actually break down crying or acting like I'm dying before the dr. takes my condition seriously & does something that will work for a change.  I'm on Prednisone, Nexium for 3 wks. now & Asacol for over a year.  I tell the nurse & doctor what I'm going thru & they prescribe meds but nothing seems to be improving.  Am I not presenting my case properly?  What should I do to get quicker results so I can live a normal life?

chili123
Regular Member


Date Joined Jan 2007
Total Posts : 300
   Posted 2/6/2008 7:11 PM (GMT -6)   
I don't know if this is appropriate time to mention this but I have very recently had a perscription of prednisone that was a differnet distributor than I normally take and was getting no relief from the 20mg dose after like 2 weeks on it because I flared at 5mg. I was able to convince my doctor to write another perscription to my regular pharmacy (CVS opposed to Meijer) for the "regular distributor". Within 24 hours of taking the CVS brand, my symptoms lessened. Now 4 days on the CVS, I have no blood, formed bm's (not all water), no urgency....almost symtom free with no nausea etc. I know it may be a long shot, maybe, but something to think about if you are getting no relief from the dose that you are on. I don't know if it could have been a generic distributor, out dated or maybe the potency was effected by a temperture that it had been stored at. I don't want to confuse your situation but I know that is how it worked for me and I have been on prednsione for now 1 1/2 yrs. Also, if you end up with surgery, you will be on the road to recovery opposed to the up and downs that aggressive UC can put you through. It is hard and I hope you start feeling better.
Pancolitis - July 2006
Medications:  Predisone - 5mg ,asacol - 12 tablets per day
Supplements:  multi-vit, calcium, folic acid
My wish:  get off prednsione....been on straight since 8/2006


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/6/2008 8:43 PM (GMT -6)   
Lindy, and infusion is medication given through an IV. Remicade is given this way, and some of the newer drugs that are being researched also are infused. They're usually given at the hospital or an infusion center. I get mine at my GI's infusion center. It's very comfortable: big soft recliners, quiet music, wireless internet access. It's a small unit and very quiet so you can read, work on your laptop or take a nap.

You might try keeping a chart of your bathroom trips. I found I was never able to get an accurate count unless I did that. It also helps to document how often you have bleeding, etc. I used to take mine to my GI visits with me to help me answer his questions.

Do you know what part of your colon is involved? Sometimes rectal medications are helpful for proctitis. There are also other 5-ASA's which work better for some of us than Asacol, principally Balsalazide (Colazal.) Immunosuppressants such as Azathioprine (Imuran) and 6-MP.

If you feel your GI isn't listening to you, by all means seek a second opinion. You'll find that a lot of us have been through more than one GI, as we didn't like the way the first one interacted or treated us so we went and found someone new.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


~ChristieAnn67~
Regular Member


Date Joined Dec 2007
Total Posts : 151
   Posted 2/6/2008 10:03 PM (GMT -6)   
ScottishCammy,
my fingers are crossed for ya!!  I have had UC since 2004,  but had my first hospitalization for it in Nov.    I was needing IV steroids, because the high pred doses at home were not working.  Then once I was in the hospital the IV steroids didn't work so well either.   That was the first time my GI actually started to mention poss surgery as well.     He never really said I had to have it, but kind of mentioned it in passing.   We tried Remicade, and he set me up to talk to a surgeon.    The surgeon referred me to a "colorectal surgeon".    and he said no surgery at this time as long as the remicade is working...and it is!  yay!!  Then there's also the possibility of Humira too....so you still have some options avail to ya before you have to consider surgery.   Good luck,  plz let us know how your doing!!  
                                          ~Christie
41 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).   Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05.
                                         Medications
Remicade infusions ~ 11/6/07, 12/6/07, 12/20/07,  6-MP 100mg daily, Pentasa 500mg twice a day, prednisone 20mg 10mg 5mg daily, Nexium 40mg twice a day, Lantus insulin 45 35 25 units daily, Novolog 10 8 5 units with sliding scale at meals, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily,  and pro-biotics daily.


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 2/7/2008 12:17 AM (GMT -6)   
Cammy - get onto the biologics asap if u can (Abatacept, Infleximab, Humira).

I just got my 8th infusion of low dose Abatacept today and my doc FINALLY told me he believes we've managed to get the colitis under control and I'm on the up and up now.

I VERY firmly believe that if the prednisone/5-ASA's aren't working then you need to try the biologics and from my experience and the others with me in the Abatacept trial, they WORK.

In 8 months (8 infusions) I've gone
- from 33 BMs in a 24 hour period and 70mg of pred a day with 8 colazide and 100mg of 6-MP;
- to 8BMs in a 24 hour period, no prednisone and 4 colazide per day with 100mg of 6-mp.

Since I was able to get off the prednisone 2 months ago the improvement per infusion has accelerated noticeably and today's news from the doc who once told me "I am strongly recommending surgery... I can't tell where the good tissue is due to the damage in there. We might be able to save it, but its going to be a long and painful road."

Suffice it to say I chose to persevere and 8 months later its paying off.
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 28yo male, Australia. Diagnosed at 16yo;
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xDesert spoon of Metamucil smooth orange 3 times a day;
    - 3xGarlic Oil caps 3 times a day, 7mL Olive Leaf Extract 2 times a day.


Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 2/7/2008 2:32 AM (GMT -6)   
Thanks everyone! I've read about Humira, but I don't think I can get it in the UK. I was told the Infliximab had only recently been licensed here.
Thanks also for all the good luck wishes;-)
Diagnosed Indeterminate Colitis 25/11/2007 (update: told by consultant 15/01/08 in his opinion definitely UC). 1 x Solofalk Enema/day 40mg Prednisolone 35mg Prednisolone 30mg Prednisolone 20mg Prednisolone 25mg Prednisolone 20mg Prednisolone 15mg Prednisolone 4g Pentasa/day

Now on 150mg Azathioprine/Imuran, back up to 40mg Prednisolone, Omeprazole 20mg, 2 x Calcium Adcal D3

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