Told: Be prepared for surgery

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Suki2008
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Date Joined Oct 2008
Total Posts : 27
   Posted 1/21/2009 12:38 PM (GMT -6)   
I spoke to my consultant today. She told me that I should be prepared for surgery! I have been on 100 mg Azathioprine since my bad reaction to Asachol. Also my prednisone has been tapered off. My symptoms are reduced enough for me to go back to work and to function with some normality. I still have to rush to the toilet too often for my liking. Mucus, blood and cramps are still occasional companions. Normal looking stools sometimes occur. Overall my improvement is not good enough! Since Christmas I have noticed a gradual decline in my condition. Today I have been prescribed an increase to 150 mg Azathioprine and now I am to have the pleasure of applying pessaries! My next colonoscopy is on 11th. February.

I do not feel the non-surgical approach has been given enough time and not enough treatments tried. What else is out there in terms of approved UK treatments? Are there promising clinical trials coming up or ongoing? For instance I have heard of the benefits of whip worm, though not necessarily in my case of severe ulcerative pancolitis.

Your comments on my general condition or my prospects would be welcome.
DX Sept. 2008 aged 45. Moderate / Severe UC; Prednisolone tapering from 80 to 20 mg; Asacol stopped after elevated enzymes indicating hepatitis. Excellent improvement followed by deterioration after Asacol stopped. Consultation due 29.10.08. Investigating reflexology for relief potential.


princesa
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Date Joined Aug 2007
Total Posts : 2204
   Posted 1/21/2009 12:41 PM (GMT -6)   
If meds are failing you, there are alot of alternative approaches - dietary changes, supplements to reduce inflammation and promote healing, probiotics to rebalance the gut ecology - you should try before you make the decision for surgery.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


Suki2008
Regular Member


Date Joined Oct 2008
Total Posts : 27
   Posted 1/21/2009 12:53 PM (GMT -6)   
Thanks Princessa.

I should put these points in my profile. I have been using probiotics, Aloe Vera, peppermint oil, a low GI diet, high roughage and a protein supplement since DX. I have no idea how much these have helped. I am glad to be getting up the gym for hard workouts and running too. This is between toilet visits. My weight has remained stable but my energies have lowered. I sleep like Rip Van Winkle nowadays.

Any knowledge to share on surgery?
DX Sept. 2008 aged 45. Moderate / Severe UC; Prednisolone tapering from 80 to 20 mg; Asacol stopped after elevated enzymes indicating hepatitis. Excellent improvement followed by deterioration after Asacol stopped. Consultation due 29.10.08. Investigating reflexology for relief potential.


princesa
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Date Joined Aug 2007
Total Posts : 2204
   Posted 1/21/2009 5:00 PM (GMT -6)   
Sorry... wasn't sure what you had tried. I'm surprised you're on a high roughage diet if you're experiencing cramping and bleeding.

I'd suggest high omega3 supplementation to decrease inflammation and l-glutamine to help heal the gut, stop bleeding and help control diarrhea. What probiotic are you taking?

I can't comment on surgery, but I'm sure someone else will jump in here.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 1/21/2009 5:09 PM (GMT -6)   
lol i always jump in here!
surgery is not that bad, i promise, and it beats trying things and praying they will work only to have them fail again.
You can always meet with the surgeon and see what they have to say, that doesnt mean you have to do it, just get lots of info.
noone ever wants to HAVE to have surgery, but in some cases it can really be wonderful in the long run

Probiotic
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Date Joined Mar 2007
Total Posts : 2832
   Posted 1/21/2009 6:53 PM (GMT -6)   
As far as pig whipworm (TSO) goes, it definitely helped me- a symptom dampener- just as dietary adjustments (for me, low carbing, but one has to find what works for you) helped, but like dietary changes, it was merely a steroid sparer and not strong enough to get me off prednisone altogether without reflaring. You might fare better- but it is hideously expensive. Does your insurance cover Remicade? It is another dampener for me, but once again not enough yet- I am hoping for them to increase my dosage or shorten my treatment interval.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/21/2009 7:09 PM (GMT -6)   

I think your GI is wise to inform you of the worse case scenario (surgery) in the event it has to happen.  I had surgery after a constant 2 year flare and have never regretted it.  However, I had the disease longer than you and got sick and tired of being sick.  But many a UC patient has to have surgery only having been diagnosed a short time.  Sometimes meds fail patients.

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


Suki2008
Regular Member


Date Joined Oct 2008
Total Posts : 27
   Posted 1/22/2009 12:20 AM (GMT -6)   
Thank you all for your input. I was shaken by the suggestion of surgery at such an early stage. Sue, I know it is different for everybody, but I have read that a J or W Pouch can still leave you leaky with a slight chance of disease returning in the form of crones. The surgery, the scarring and the 6 weeks with a side-kick I will have to put up with, but I would not want the long-term embarrassment of watery leaks. The effect on love life would not be good either.

Remicade I will ask about. In the UK there is no need for insurance if it is an approved NHS treatment. It may have failed their cost effectiveness yardstick though. Hopefully not! Whipworm, I will pursue even though that hasn't been approved yet. It has been tried with crones sufferers here.

I guess I will have to keep looking for what works for me. I just wish I hadn't reacted so badly to asacol. That really did the trick. I was symptom free within a week. Is there another powerful anti-inflammatory out there, or in the pipeline?
DX Sept. 2008 aged 45. Moderate / Severe pan UC; Prednisolone tapering from 80 to 20 mg; Asacol stopped after elevated enzymes indicating hepatitis. Excellent improvement followed by deterioration after Asacol stopped. Consultation due 29.10.08. Reflexology was waste of time. Azathioprine 100 mg since November 2008. Prednislone tapered off. Reduced symptoms, but not good enough. Still get to the gym. Probiotics, Aloe Vera, peppermint oil, a low GI diet, high roughage and a protein supplement since DX. Azathioprine increased to 150 mg 21.01.09 with pessaries included. Surgery hinted at. Colonoscopy due 11.02.09. I hate this disease!!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/22/2009 8:02 AM (GMT -6)   
Leaking or incontinence is mostly limited to recovery of surgery. I do not have have either problem but did in my first couple month's post surgery. The problem with Crohn's that you describe is not that remaining tissue turns to Crohn's but that the original diagnosis for UC was incorrect. UC does not turn to Crohn's, Crohn's was always there but never identified. Differentiating between the two diseases is very difficult. Life is not perfect after surgery but life with UC was worse, for me, than life with a jpouch. I hope you are able to get your UC under control and not have to make this decision but I do think all UC patients should research and understand surgery since about 20-30% of UC patients will have to resort to it.

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


Miss3
Regular Member


Date Joined Sep 2008
Total Posts : 97
   Posted 1/22/2009 8:33 AM (GMT -6)   
You may want to look into Low Dose Naltrexone before resorting to surgery as well. More information can be found here

http://www.lowdosenaltrexone.org/index.htm

Just another option available.

Miss
36 yr. old homeschooling mom of 3
Diagnosed Crohn's 06/08, then UC 08/08
Asacol made me worse, reactions to Remicade
Currently taking LDN, feeling pretty good
Probiotic, Omega 3, Digestive enzymes


Suki2008
Regular Member


Date Joined Oct 2008
Total Posts : 27
   Posted 1/22/2009 3:48 PM (GMT -6)   
Princesa, you asked me what pro biotic I was on. I have only ever used off the shelf supermarket pro biotics and live plain yogurt, such as Danone. My GP, (General Practitioner) , said that the NHS does not prescribe anything any better than this. I have considered pro biotics as a possible remedy because my colitis followed a severe bladder infection, cystitis, and back-to-back antibiotics courses.

Is there a more potent or fit for purpose probiotic?

I have also read about antiviral treatments that are supposed to flush embedded viruses out from within our cells so that our immune systems can destroy them rather than attacking our good cells. You have all looked at the Ray Lala site I guess. What do you think of his $200 course. I figure that if it was that good everybody would be doing it. http://www.resolvecolitis.com/Welcome.html
DX Sept. 2008 aged 45. Moderate / Severe pan UC; Prednisolone tapering from 80 to 20 mg; Asacol stopped after elevated enzymes indicating hepatitis. Excellent improvement followed by deterioration after Asacol stopped. Consultation due 29.10.08. Reflexology was waste of time. Azathioprine 100 mg since November 2008. Prednislone tapered off. Reduced symptoms, but not good enough. Still get to the gym. Probiotics, Aloe Vera, peppermint oil, a low GI diet, high roughage and a protein supplement since DX. Azathioprine increased to 150 mg 21.01.09 with pessaries included. Surgery hinted at. Colonoscopy due 11.02.09. I hate this disease!!


Suki2008
Regular Member


Date Joined Oct 2008
Total Posts : 27
   Posted 1/22/2009 3:59 PM (GMT -6)   
Miss3, Thanks for the LDN link. That looks quite exciting. I assume it has been approved here in the UK because there is a pharmisist producing it in Glasgow, Scotland. I will ask my consultant to consider providing it. Unlike Azathioprine it does not suppress the immune system, it boosts it and normalizes it. That makes more sense to me.
DX Sept. 2008 aged 45. Moderate / Severe pan UC; Prednisolone tapering from 80 to 20 mg; Asacol stopped after elevated enzymes indicating hepatitis. Excellent improvement followed by deterioration after Asacol stopped. Consultation due 29.10.08. Reflexology was waste of time. Azathioprine 100 mg since November 2008. Prednislone tapered off. Reduced symptoms, but not good enough. Still get to the gym. Probiotics, Aloe Vera, peppermint oil, a low GI diet, high roughage and a protein supplement since DX. Azathioprine increased to 150 mg 21.01.09 with pessaries included. Surgery hinted at. Colonoscopy due 11.02.09. I hate this disease!!


rastaskank
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/23/2009 6:00 PM (GMT -6)   
Hi,


Like you I live in the UK.
My consultant also talks to me about surgery as though it's inevitable. Last time she said some people in a similar position to myself (UC pancolitis - 8+ movements a day.) would be banging her door down begging for surgery. Fair enough, but I take it all with a pinch of salt after I read the NICE guidelines saying that "surgery should not be seen as a last resort"

I have yet to be convinced post surgery would be significantly better than pre...

Suki2008
Regular Member


Date Joined Oct 2008
Total Posts : 27
   Posted 1/25/2009 11:54 AM (GMT -6)   
Rasaskank,

Yes it seems that UK surgeons are trigger happy. We can cut, so we will.

For the last few days I have been feeling great. I have started taking TNT, Total Nutrition Today, a high fibre beverage. Since I started using it my bloating, urgent visits, cramps and bleeding have stopped. I feel well. This all happened before they increased my Azathioprine and introduced foam to my treatments. Cross fingers my improvement continues.
DX Sept. 2008 aged 45. Moderate / Severe pan UC; Prednisolone tapering from 80 to 20 mg; Asacol stopped after elevated enzymes indicating hepatitis. Excellent improvement followed by deterioration after Asacol stopped. Consultation due 29.10.08. Reflexology was waste of time. Azathioprine 100 mg since November 2008. Prednislone tapered off. Reduced symptoms, but not good enough. Still get to the gym. Probiotics, Aloe Vera, peppermint oil, a low GI diet, high roughage and a protein supplement since DX. Azathioprine increased to 150 mg 21.01.09 with pessaries included. Surgery hinted at. Colonoscopy due 11.02.09. I hate this disease!!


Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 1/25/2009 6:26 PM (GMT -6)   
Suki2008,

I am also in the UK and facing surgery too. What are your symptoms like at the moment?

I was told to prepare for surgery almost a year and a half ago, since then I've fought tooth and nail to keep my colon where it is, although it might be a lost cause - I probably will have to have surgery one day.

Probably, sooner the better...

G

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/25/2009 7:19 PM (GMT -6)   
Hang in there you guys : )
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/25/2009 9:22 PM (GMT -6)   
Suki2008 said...
Princesa, you asked me what pro biotic I was on. I have only ever used off the shelf supermarket pro biotics and live plain yogurt, such as Danone. My GP, (General Practitioner) , said that the NHS does not prescribe anything any better than this. I have considered pro biotics as a possible remedy because my colitis followed a severe bladder infection, cystitis, and back-to-back antibiotics courses.

Is there a more potent or fit for purpose probiotic?
In my opinion, yes. Cheaper supermarket brands and yogurts are notorious for making unsubstantiated claims. When tested, they often don't have near the viable organisms they say they have.
 
I've had good luck with Custom Probiotics' six strain blend and Natren's non-dairy Bifido Factor, Megadophilus and Digesta-Lac powders. Others here can recommend other high quality brands. Ideally, you want to buy a brand that's been tested by independent labs and has excellent customer testimonials.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


Suki2008
Regular Member


Date Joined Oct 2008
Total Posts : 27
   Posted 1/26/2009 12:01 PM (GMT -6)   
Thanks Princesa I will look up those probiotics over here.

Gargamel, Until a few days ago my symptoms included about 10 visits to the loo a day with increasing blood, mucus, gripes, wind and general mess. I was going down hill. The last few days have been a transformation. Proper poos today!!
DX Sept. 2008 aged 45. Moderate / Severe pan UC; Prednisolone tapering from 80 to 20 mg; Asacol stopped after elevated enzymes indicating hepatitis. Excellent improvement followed by deterioration after Asacol stopped. Consultation due 29.10.08. Reflexology was waste of time. Azathioprine 100 mg since November 2008. Prednislone tapered off. Reduced symptoms, but not good enough. Still get to the gym. Probiotics, Aloe Vera, peppermint oil, a low GI diet, high roughage and a protein supplement since DX. Azathioprine increased to 150 mg 21.01.09 with predifoam included. Surgery hinted at. Colonoscopy due 11.02.09. But, wait! Excellent improvement since increasing TNT roughage supplement 23.1.09. Most symptoms have gone.

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