Posted 1/29/2008 7:17 PM (GMT -7)
Hi Sigh. I just wanted to add that your increased bleeding today may be a result of the biopsies the doctor took yesterday. Biopsies can cause bleeding for a few days, even in people who don't have IBD or any type of inflammation in their colons. Also, scopes can irritate an already inflamed/irritated colon. I am sorry the scope was painful for you. That must have been scary. I had a pretty horrible experience with a sigmoidoscopy last year...it was very painful. But for both of my colonoscopies I don't remember a thing because of the sedatives.

Once they figure out what you have (UC or otherwise), you can get started on medications which will most likely make you feel better. There are several options for meds. Usually, people have to try out all their options when it comes to meds before their insurance would cover surgery. Plus, as with any surgery, there are possible complications.

Hope you feel better soon.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D); fish oil

Posted 1/30/2008 9:38 AM (GMT -7)
I'm getting outright depressed now, this morning was the most painful movement I've had in years. Yesterday I went to the washroom 7-8 times including having to rush once while out of the house. It's not D but it's imminent and often accompanied with mucus, blood, and pain.

For the past 3 weeks now, each week has been progressively worse than the last. Since the colonoscopy 2 days ago, I can "feel" my left lower colon all the time now. It doesn't hurt, I can just feel it there. I don't know if that makes sense.

I was overjoyed when I found out it wasn't cancer but now I'm not so sure. Maybe cancer would have been better.

>>I'd strongly encourage you to get your care where you live, as whatever you decide you'll need lifetime monitoring.<<
This ends my style of life. I don't right now "live" anywhere. I'm expat who spends less than 183 days in any one country. I travel extensively for business and mix it with enjoyment. 10 weeks ago I was golfing in jamaica, 8 weeks ago I was surfing in Panama, 6 weeks ago I was snowboarding in Canada. It's a life I've worked and continue to work very hard for and only started realizing the benefits of within the last 18 months. Before that I was working 7 days a week and averaging 10+ hours a day and did this for about 6 years. I'm 31 and have given up a large portion of my 20s to building, stressing, and growing a business. Everyone's been encouraging me (family, friends, colleagues) to take a step back and I've been slowly trying to take that advice.

Then this.... I really can't take it. Seriously if the rest of my life is going to be characterized like the last 4 weeks I couldn't even golf. I can't work out.. Today I can't even walk to the #($*&ing coffee shop for a bagel, let alone get off the couch.
Posted 1/30/2008 10:10 AM (GMT -7)
I am sorry, sigh. We all know what you are going through. I have had a rough time with this disease, but there are good days, even good weeks, sometimes if you find the right medicine you can be in remission from symptoms. I will admit that there are some days I can't leave the house still. After my last colonoscopy I was flaring like you, everything felt so irritated and the bleeding was worse. Rest helps so much. Watching your diet (some may disagree) helps me. You start to learn what you can and can't tolerate. For me, it's greasy foods, caffiene, msg, spices, beef, milk, to name a few of the things that kill my colon. It used to be a lot harder for me to stop eating those things. It's just not worth the pain anymore for me. I don't think about cancer, I guess cause I know if I did get colon cancer they could just take the darn thing out. Still, I've been on and off sick for the past 12 years, since high school, but I haven't had surgery. It is a big surgery. It would be a huge change that I wasn't ready for and am still not sure about. I am sure doctors will advise you to try medicines first. You need a reliable GI you can trust. I recommend the book "The New Eating Right for a Bad Gut" by James Scala and the DVD True Guts if you are diagnosed with UC or Crohn's. I wish the DVD was around when I was diagnosed. Back then it seemed like UC was a dark secret that no one knew about, but times have changed. Take care of yourself and I hope you feel better soon. Oh ps- Gatorade helps me gain some strenghth back when I am on the tiolet all day, some people say it's too sugary and makes them worse, but it keeps me from getting dehydrated. Sorry for writing a book here. We are here anytime. Here is a link for trailer for the DVD, the trailer itself is good if you dont want the DVD.
http://www.trueguts.com/tg_brightcove_crohnsdisease.html
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

Posted 1/30/2008 10:22 AM (GMT -7)
I forgot to add that you shouldn't take any NSAIDs right now, like Aspirin, Ibruprophen, Alleve, etc.  For OTC pain relief, Tylenol is the only safe one I know of.  I wasn't sure if you knew that NSAIDS can make your inflammation worse.

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

Posted 1/30/2008 10:55 AM (GMT -7)
NSAIDs should never been taken for those who have IBD, not just during flares, NSAIDs promote bleeding in the bowels which is the reason why.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

Posted 1/30/2008 11:25 AM (GMT -7)
>>After my last colonoscopy I was flaring like you, everything felt so irritated and the bleeding was worse.<<
How long did this last for? Will it get "better"? Right now I feel like everything is occurring in plateaus. Each time I reach a new level of discomfort with the inflammation it just stays at that level until it gets worse.

The colonoscopy and aftermath ranks among the worst experiences in my entire life.

It's ironic how changes put things in perspective Before the colonoscopy I could deal with things compared to the way they are today. I feel a bit like wow, life was good back then. I'd really like to travel home to be with my family but there's no way I could make the 4 hour flight at the moment.

btw, thanks all for the support & well wishing. It is appreciated and I'm sorry for being so negative, it's all I've got right now though.
Posted 1/30/2008 12:52 PM (GMT -7)
I couldn't get out of the flare until I took Flagyl, which helped some, and then Prednisone, which really helped.  I don't like to take Prednisone because of the side effects, but it helps almost everyone get out of a flare better than anything else.  It's hard once you start it to taper off of it, because in my experience, when I lowered my dose, the flare would return.  It's not something you want to take long-term due to the side effects.  So your doctor didn't prescibe you anything after your scope?  When are you going back for te results?  If you get worse, call the doctor's office please. 
 Sadly, I don't really remember life before UC that well since I was so young, but now UC is in the background at least.  I know I still have it and it's on my mind, but it doesn't take over my life anymore.  When I flare up, the UC obviously is front and center once again.  Don't worry about being negative, we were all there once and we still have our days too. 
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

Posted 1/30/2008 4:57 PM (GMT -7)
I'm wondering why the doc could not give you a diagnosis in advance of biopsy results. Have you done the stool test for ova & parasites? One reason you feel so miserable with a constant urge to empty out-- you have inflammation bigtime in the rectum that causes tenesmus. You need medication, not surgery! There are several Canadians writing to this site; hopefully they'll see your post & reply re gastros in Toronto area. Meanwhile, try to take it one day at a time & think about what soothing, bland foods/drinks you can have to keep up your strength & avoid dehydration. Lie down to rest as much as you can. Don't worry just now that you'll never be able to travel again; it's a drain on your energy level. You'll likely mend with the right diagnosis & appropriate meds, but this make take a while. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)
Posted 1/31/2008 7:38 AM (GMT -7)
Great advice from Old Hat once again.  I agree.  You really need medication for all the inflammation right now.  I hope you are feeling better, keep us posted.

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

Posted 1/31/2008 9:09 AM (GMT -7)
Sigh said...
Before that I was working 7 days a week and averaging 10+ hours a day and did this for about 6 years. I'm 31 and have given up a large portion of my 20s to building, stressing, and growing a business. Everyone's been encouraging me (family, friends, colleagues) to take a step back and I've been slowly trying to take that advice.

Then this.... I really can't take it. Seriously if the rest of my life is going to be characterized like the last 4 weeks I couldn't even golf. I can't work out.. Today I can't even walk to the #($*&ing coffee shop for a bagel, let alone get off the couch.
A stressful lifestyle, working too hard, not taking care of yourself and (probably) not eating right all can contribute to IBD or make it worse. There are alot of Type A personalities here. It's very important you use this downtime to reevaluate your lifestyle, learn all you can about IBD and allow yourself time to rest and heal. There are alot of options out there for natural healing, reestablishing a healthy digestion and increasing your level of overall health and well-being, but you've got to stop long enough to investigate, learn and put into practice. Your body is desperately sending you a message that something's wrong. It's up to you to decide how to respond.
 
You are not destined to feel as bad as you do now for the rest of your life. There are many of us here who have found the right combination of meds, diet, probiotics and other supplements to turn our situation around and achieve long-term remission. I look and feel better now than I did ten or twenty years ago and I'm definitely taking MUCH better care of myself. I'm sorry it took a serious disease to wake me up.
 
Again, you are going to have to be patient. Until you have a firm diagnosis, you don't know what you're really up against or how to respond to it. Even once you know your diagnosis, it takes time to heal.
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.
 
 

Posted 1/31/2008 10:53 AM (GMT -7)
sigh- I also have two distinct and unconnected areas with inflammation and I don't have any inflammation in my rectum which is really strange. My doctor is running one more blood test to make sure it isn't crohns but he is pretty sure it is UC. I think this kind of inflammation pattern is typical of some kind of infection although that was ruled out in my case as well. If you are going to another doctor you might try to get the fecal tests redone.( I am considering this). I felt horrible after my colonoscopy until I started the medication. Once you get the inflammation down some it will help a lot. I hope you feel better soon.
Jessica 26/F
Asacol 3pills /three times a day(from 2 pills/ three times a day)
Prednisone 40Mg/day taper every 5 days(at 30 mg currently)
Culturelle once daily/ three times a day
Tried (Entorcort EC 9ml/day)

Posted 1/31/2008 10:58 AM (GMT -7)
So very well put, Princesa! I think your advice re lifestyle assessment/changes after UC diagnosis should be posted on the Forum homepage. All new members should read it & take heed. Your own struggles have obviously brought you invaluable wisdom! Thanks for sharing with us-- / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)
Posted 1/31/2008 11:55 AM (GMT -7)
Hi Sigh! Welcome to HW :)

Do you have a "home base"? I'd suggest setting up care there - so you have one GI to talk with when there are issues to discuss.

Have you tried any pain killers - to try to make yourself more comfortable? One that strangely works well for my GI cramping is the blue Pamprin. (This one specifically contains no NSAIDs.) It helps a bit more than extra strength Tylenol.

Hang in there - it won't always be so bad. Try to just make it day to day - or hour to hour if you need to.
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate

Posted 1/31/2008 12:32 PM (GMT -7)
Sigh, I’m sorry to hear what you are going through. 2.5 weeks is not waiting forever for a diagnosis. Many people on this forum wait months or even years for a proper diagnosis. Most doctors will not prescribe medication, except for possibly pain killers, until you have a proper diagnosis. It does sound like Crohns or UC to me but wait for the biopsy results. Sometimes even they can be inconclusive.

You shouldn’t even be thinking of surgery without a proper diagnosis. If it is Crohns, surgery as a cure is not possible. For UC most surgeons would not consider surgery unless you had tried most treatments with no success or if you require emergency surgery. You have a long way to go. It can take well over a year to try most treatments. I live in Toronto. Where did you get your colonoscopy done? You really should be seeing a GI. I go to Mount Sinai Hospital in Toronto. They have a very good IBD department.
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision
 

Posted 1/31/2008 7:52 PM (GMT -7)
Old Hat said...
So very well put, Princesa! I think your advice re lifestyle assessment/changes after UC diagnosis should be posted on the Forum homepage. All new members should read it & take heed. Your own struggles have obviously brought you invaluable wisdom! Thanks for sharing with us-- / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

Thanks, Old Hat. Wisdom comes at a very steep price. I used to be the world's worst stressed out, perfectionist worry wart. My body repeatedly tried to warn me... first with "irritable bowel syndrome," then a killer case of mono and finally UC. I had to go through two years of hell before I finally began to see the light at the end of the tunnel.

I've said it here before, but it bears repeating: use the time you're ill and housebound to read everything you can get your hands on regarding IBD and general digestive health. Research it on the Web. Talk to other sufferers and, perhaps most importantly, talk to folks who've figured out how to manage the condition and achieve remission. And keep an open mind. There's a lot of great information out there you absolutely will not get from your gastro.


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.
 
 

Posted 2/1/2008 8:14 AM (GMT -7)
Thanks for all the responses, many or all of them are right on the mark. Thankfully, the last couple days I have been better than the days immediately following the colonoscopy. It's a long way from good but it's equally a huge relief to see even some improvement. Since onset it's been one negative plateau after another without any reverse and I was scared. I still am of course but today I'm backed with a little bit of positive. If I feel the same over the next few days I'll book a flight back home and figure out where I go from here.

I'm also sorry it's taken something this serious to finally force me into some required reflection.
Posted 2/1/2008 8:23 AM (GMT -7)
Don't beat yourself up over it, but look at this as an opportunity to make some very positive changes in your life. Keep us posted concerning your diagnosis. And look into those probiotics. ;)
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.
 
 

Posted 2/11/2008 1:37 PM (GMT -7)
Got my biopsy results back today and I was diagnosed with active UC. Next step is to now set up an appointment with a GI and see what exactly this means. I thought I had things somewhat under control with diet myself as the visible blood is gone as well as the pain since the colonoscopy fiasco. At least as far as I can tell lately there has been no visible sign of blood or mucus in my stool and I've been quite regular, 1-2 movements per morning and nothing else. Is it normal/possible with UC that you can put yourself into remission or is the flare still active just much more mild?

Have been keeping a really plain diet (all organic, no preservatives, fruits, vegetables, chicken, etc.) and every 48 hours adding something new in to see what effect it has. Every MD I've talked to says that this is not diet related but figured it can't hurt to try this out for myself. That said, the experience so far has really lowered my opinion of MDs as they don't really seem to know a whole lot. It's almost like a checklist then throwing a bunch of tests at it and escalating. Hopefully the GI will have some more insight but I gather this is more going to be a personal battle for me.

Will look into some of that recommended reading now also and cross my fingers the Gi can shed some more light.

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