How bad can it get?

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Connor77
Regular Member


Date Joined Jul 2016
Total Posts : 368
   Posted 10/3/2017 12:54 PM (GMT -7)   
Doctors keep telling me my UC case is one of the worst they've ever seen, and people keep praising me for surviving each time i flare. Honestly though, I have nobody to compare myself to. I don't know anyone else in person who has IBD.

Whenever I flare, I immediately shed all my body weight... 70lbs within a few weeks. I become a skeleton and I can't walk. I'm bed ridden and need 24/7 care from family members. I usually have to take morphine and dilaudid for pain, in addition to prednisone. In the eye of the storm, the nausea and fever are brutal. I'm usually vomiting each time I have a bowel movement and get very dehydrated. (Yes, it can become life threatening if I don't have an IV.) BMs are about 30+ times per day. Sometimes I have to wear diapers because I can't physically get out of bed out of sheer exhaustion.

It usually takes me 2-3 months to exit the flare and start regaining normalcy in my life, but the longer term bowel healing takes 6-8 months before I really start feeling like a balanced human being again. That's the cycle I'm stuck in. 5 months on, 7 months off. Rinse, lather, repeat.

What's the worse it has gotten for you? I am curious. I hear about people having flares and going to work, and it's just not my reality. When I flare, my whole life crumbles and everything becomes about the disease.

I'd love to hear some stories.

RISEagainst
Regular Member


Date Joined Sep 2017
Total Posts : 34
   Posted 10/3/2017 1:39 PM (GMT -7)   
I don't understand. If your flares are that severe why haven't you had your colon removed yet? I've had 2 severe pancolitis flares and had to have my colon removed. Why do you still have yours? I'd think if it was as bad as the GI thinks it is he would want you have surgery.
Diagnosed with Ulcerative Colitis (proctitis) July 26 2011. After a few minor flares my GI disappeared and I got worse and my last 3 flares were Pancolitis.
After spending 2 weeks in the hospital I decided to have surgery. First of 2 Jpouch surgeries was September 2nd 2016. Takedown was February 1st 2017.
It's not easy but what is? Well, other than having a healthy colon.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11051
   Posted 10/3/2017 1:41 PM (GMT -7)   
I have proctosigmoiditis since 2011, my initial flare was mild, second was severe, and I've had a couple very minor ones since. The worst i had was 20+ (there's a point you stop counting) bms a day, I'd wakeup 3-4 times a night to go. I'd have sharp abdomen stabbing pains. I was near incontent with accidents and extreme urgency. I was back to my highschool weight, 127-132 pounds when my normal is about 150-155 pounds. I responded partially to oral pred after about 2 weeks. That flare lasted a full year in a simmering inflammation state with pred-dependency until I went on Remicade. Only very minor flares ever since.

I've never been hospitalized due to my UC... maybe i should have gone since I was clearly fulminant colitis, dehydrated, weak, and barely eating. I am bull-headed and stubborn though to a fault.

I haven't experienced the joint pains that a number of you have experienced.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

That walk we do, due to post-public-restroom-embarassment, from our awful poop-spolsion in the bowl that flushing alone won't fully hide. Quiet, sly, and as near of a direct-path to the exit as possible...

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10098
   Posted 10/3/2017 2:07 PM (GMT -7)   
With flares that severe, it kinda sounds like you're on a one-way path towards surgery. I'm surprised you pull out of them.

My Crohn's was one long, continuous flare up for 13 years, which gradually got worse and worse. I had pancolitis with terminal ileum involvement. No fistulas. It started off very mild and stayed pretty mild for about 5 years. Then I fell ill with brutal fevers. Like, really brutal: I'd be lying in front of a heater with two sweaters on and still shivering violently.

Eventually the brutal fevers passed after a few weeks or months, but I was never the same afterwards - my baseline had got worse. And over the following years my baseline continue to get worse. I'd be semi-stable for a year or two, the brutal fevers would come back for a few weeks, semi-stable again for a while, etc. I was systemically ill in a way that I wasn't in the early years, e.g. severe anaemia, fatigue, fevers (I still got low-grade fevers in between the periods of high fevers).

I did lose weight, but gradually rather than dramatically. During really bad periods, I craved cold drinks and so probably kept up my calories through fruit juices and milkshakes. I did end up really underweight, but it happened over a period of 3 years or so.

I was never in remission, no matter what meds I went on. Took a course of pred about once a year on average. That would make me feel better for a while, but the symptoms would quickly come back.

In 2011 the sh!t really hit the fan and I developed toxic megacolon. Ended up in hospital for nearly 2 weeks; the hospital fumbled the ball at first by thinking I had gastroenteritis (lol, as if I'd go to A&E for a bout of food poisoning). My CRP was 350. My temperature the night before I was admitted was 40.5C. (It had gone down by the next day; it was spiking very high at night and that was the highest point it reached.)

I've never been the type to have 30 BMs a day - I think around 15 a day has been my maximum, no matter how ill I've been.

Oh yeah, and the 9/10 abdominal pain, which led me back to A&E at least 5 more times. Excruciating and unbearable. And always accompanied by fevers and feeling extremely ill. IV steroids and morphine would pick me up, I'd do okay on oral pred for a couple of months; relapse and end up back in hospital. After about 18 months of that cycle I booked surgery. I was never getting into remission; the only 'remission' I was experiencing was a completely false, steroid-induced, one.

I don't hear of many people with IBD having bad fevers. I used to sometimes wonder if I had a hidden infection or abscess, but nothing was found over the 7 or 8 years I was having them for and eventually I just put it down to the Crohn's and having a toxic colon, since there seemed to be no other cause.

I also had a stricture which made life interesting at times with partial obstructions.

Hope you don't mind hearing from somebody with Crohn's, but I guess I felt like talking about it :-/

PS: My surgeon wanted to do surgery the very first time I was admitted, but apparently my GI talked her out of it, wanting to give the Remicade more time to work (it never did).
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

IamCurious
Veteran Member


Date Joined Jan 2010
Total Posts : 3075
   Posted 10/4/2017 5:52 AM (GMT -7)   
How or what do you use to escape such a severe flare? I know you have posted about prednisone but I don't see a signature indicating what meds you are on.
Male, born 1951, DX IBD Feb08. No meds, allergic to Mesalamine. Food diary instead of SCD or Paleo.
When needed VSL#3DS sprinkled over powdered psyllium seed is very helpful.

Lactobacillus Reuteri (NCIMB 30242), Culturelle, Saccharomyces boulardii.
Fish oil, curcumin, extra D3, magnesium, multivitamin, glutamine when gut repair needed.

Resistant Starch and lots of fruit & vegetables (but no cruciferous), No Gluten, no soda, no HFCS, no xylitol or sorbitol, no trans fat, no shellfish, no carrageenan, no GMO foods saturated with Roundup.
Nature created all of the locks, therefore Nature has all of the keys

Connor77
Regular Member


Date Joined Jul 2016
Total Posts : 368
   Posted 10/4/2017 1:24 PM (GMT -7)   
RISEagainst said...
I don't understand. If your flares are that severe why haven't you had your colon removed yet? I've had 2 severe pancolitis flares and had to have my colon removed. Why do you still have yours? I'd think if it was as bad as the GI thinks it is he would want you have surgery.


Surgery was suggested many times but I refused. I don't want to explain why, would rather stick to the topic of this thread. Thanks. I'm just curious how severe it has been for others.

Connor77
Regular Member


Date Joined Jul 2016
Total Posts : 368
   Posted 10/4/2017 1:34 PM (GMT -7)   
IamCurious said...
How or what do you use to escape such a severe flare? I know you have posted about prednisone but I don't see a signature indicating what meds you are on.


Based on people's replies, I guess I'm pretty severe.

Prednisone takes it from a 5/5 to a 4/5. I usually languish at home on IVs (a nurse comes in) with my family taking care of me.

I've had three flares total (on my third now). In the first year the flare stopped when all my body's iron was depleted and I started taking heavy duty probiotics that I made myself. I was hospitalized for 6 weeks in the first year, which was a big mistake because all the hospital interventions made my flare worse. They scoped me 6 times in that period and deprived me of proper food.

In the second year complex stool testing (which I ordered myself and paid for) found multiple infections. Antibiotics downgraded my condition. In hindsight, the first flare ended because the infections in my gut no longer had iron to feed on. Once I got an iron IV in the winter time, my second flare started within 3 weeks.

This year, in my third flare, I discovered MAP infection. This year's flare isn't as bad, probably a 4/5, thanks to the clearance of infections last year. But I still lost all my body weight and it got bad. MAP is the last layer of the onion I'm peeling back.

I'm hoping that once all the infections are gone, I'll either be in remission or my IBD will be way less severe.

The doctor's aren't allowed to take my bowel out. I have legal documents preventing them from doing it. I am extremely stubborn and I believe that my condition is caused by infections. If they take out my bowel the infection will just move elsewhere, or cause pouchitis. No thank you.

RayB
New Member


Date Joined Oct 2017
Total Posts : 8
   Posted 10/4/2017 3:42 PM (GMT -7)   
I have had ulcerative colitis ("pancolitis") for two years now and when I flared, I had 10 to 15 BMs per day, joint pain, fever, lost lot of weight, etc. (Currently, I am tapering off prednisone) I know one person with UC who treats any flares with just acupuncture (He mentioned it is for pain reduction) and he takes a lot of probiotics. But, the acupuncture treatment does not clearly sound that scientific to me. And, personally, no amount of acupuncture could measure up to the effect of prednisone or a biologic on UC. Just a quick datapoint about me to you regarding how bad UC is for me.

I was always afraid of staying with having a lot of BMs per day as a result of not treating UC fully (considering the increased risk of colorectal cancer) But maybe, I am just a bit paranoid about these things.

I pray that you regain good health and that you are pain-free!

God Bless!
Ray

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15435
   Posted 10/4/2017 5:18 PM (GMT -7)   
How bad? So bad that I had to have surgery... thank goodness I did it too, I wasted way too much time trying to get to the bottom of something that is now in the past.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

RISEagainst
Regular Member


Date Joined Sep 2017
Total Posts : 34
   Posted 10/4/2017 8:38 PM (GMT -7)   
Connor77 said...
i have legal documents preventing them from doing it. I am extremely stubborn and I believe that my condition is caused by infections. If they take out my bowel the infection will just move elsewhere, or cause pouchitis. No thank you.


You know what's going to eventually happen right? You're going to get a preforation and die of sepsis, or get colon cancer and possibly die. There is absolutely nothing wrong with surgery. Or pouchitis. They aren't comparable to the suffering that is a severe UC flare.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4819
   Posted 10/4/2017 9:08 PM (GMT -7)   
Been there, done that. First flare I lost 55 lbs in 2 months, it was so bad that my other organs started to have problems. I ended up in the hospital for 24 days, 14 of them was on Cyclosporine IV. It was a very long recovery.

The next time I got just as sick and ended up in the hospital on IV Cyclosporine for 21 days. After that I promised myself that I’d never go back in the hospital again without having surgery.

I fought it for 6 years after that with biologicals and steroids, 4 of them were great when Remicade was working for me, it was like I didn’t have UC and I could work and do whatever I wanted.

What happend was that I fought it too long with steroids and it killed my hip and had it replaced last December. I’m in my 30’s. You can read about it in my signature.

I treated my UC very aggressively but I always knew that I would need surgery eventually. I’m much happier with my jpouch even though I have chronic pouchitis that I need to treat. It’s much better than living with uc.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

dinkydonuts
Regular Member


Date Joined May 2012
Total Posts : 100
   Posted 10/4/2017 10:20 PM (GMT -7)   
How are we supposed to react to this? I feel like most people here are trying to do various things to get better and to beat the disease to have a semi-normal life.

But it sounds like you are bragging about your suffering? You even admit that you are stubborn and know what the answer is...

We can't help you if you don't want to help yourself...
Lialda 3.6g daily

Connor77
Regular Member


Date Joined Jul 2016
Total Posts : 368
   Posted 10/5/2017 12:47 AM (GMT -7)   
RISEagainst said...
You know what's going to eventually happen right? You're going to get a preforation and die of sepsis, or get colon cancer and possibly die. There is absolutely nothing wrong with surgery. Or pouchitis. They aren't comparable to the suffering that is a severe UC flare.


You're being disrespectful now. You can stop right there, ok? You don't know what the future holds. I respect other people's choices to do what they need to do. I'm doing what I feel I need to do.

This thread is to discuss people's IBD severity, not to lecture me on my choices. What I choose to do with my condition is actually none of your business and you have no right to tell me what's GOING to happen when nobody knows that but god.

Now please stop derailing my thread. Thank you.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11051
   Posted 10/5/2017 2:36 AM (GMT -7)   
Yes, you're definitely on the severe end of the scale. Certainly not unique as I've read a few similar cases of the years here. There are some that go to great lengths to avoid a surgery, do to philosophical or other reasons. As an example, we had a poster (forget the username) who drove around in a van with a makeshift bathroom in it for uc urgencies (one of those portable chem-based toilets used for camping/sailboats). There are ways to limp by for long periods of time with bad uc symptoms for those who are stubborn and must try everything...

I hope this triple antibiotic/MAP treatment is your golden ticket to a remission.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

That walk we do, due to post-public-restroom-embarassment, from our awful poop-spolsion in the bowl that flushing alone won't fully hide. Quiet, sly, and as near of a direct-path to the exit as possible...

Bull101
Regular Member


Date Joined Feb 2015
Total Posts : 461
   Posted 10/5/2017 4:54 AM (GMT -7)   
20+ BMs a day and throughout the night. 2 or 3 blood transfusions for a hemoglobin below 7. Dropped from 165 lbs to 130 lbs.

Surgery happened as it was the only solution. And per your responses quite frankly I can't feel bad for you. Surgery isn't all that bad, and you sound like you desperately need it. I got my life back, am enjoying life much more. If you want to continue wasting years, money and taxing people that need to help you for when you "can't get out of bed" then be my guest but I wouldn't ask for sympathy.

Good luck.

MarjieKay
Veteran Member


Date Joined Jun 2017
Total Posts : 611
   Posted 10/5/2017 6:16 AM (GMT -7)   
This thread causes me to take pause and reflect deeply about how different we humans are.........Connor, your path and mine thus far are at completely opposite ends of the spectrum.

My disease has been incredibly easy to manage. Even when in 'active flare mode' my symptoms were nothing more than blood and mucus on nicely formed stools. No accidents, basically no pain, almost no diarrhea. At most 4 BM's a day (but mostly 1 or 2 and always in the a.m.).

But I am insanely diligent about the methods I am using to combat my inflammation (just made a fresh batch of crazy strong ginger tea last night) and I always will be because I've seen several people post here whose disease started out like mine-- and who've subsequently taken turns for the more serious and even ended up having surgery.

I am as stubborn as the day is long........and I also believe there is quite possibly an infective agent at the root of this disease (MAP? or something else?).......and I am not judging you at ALL Connor, we must each decide for ourselves these things.

As much as I want to save my colon, I would never allow myself to suffer the way some people do. I just don't have it in me. I am weak I guess. Seeing me emaciated would absolutely kill my partners spirit and make my family feel inadequate and ineffective at helping me.

Hell......I'd feel all that MYSELF.

I don't want any of us to suffer.......not ONE of us. And I am really glad to hear you'll be getting that MAP treatment Connor and I am praying CRAZY HARD for you. I have been reading a lot about MAP on the Facebook groups you mentioned awhile back. I hope to see all the promised progress......AND SOON. Good luck fella !

Edit for grammar
F, 51
2008 proctitis, 2016 chronic UC rectum/sigmoid, 2017 quiescent UC
Current pharms: Pentasa 3g day, mesalamine enema (Tapering-1 x per wk now)
Anti-inflammatory diet :IBD-AID from U of Mass

Extras:
Advanced gut health probiotics, Primadophilis Reuteri, water & milk kefir
Digestive enzymes (big protein meals only now), Psyllium seed powder, Ginger Tea
Vitamins D, C & K, fish oil, cal/mag

Post Edited (MarjieKay) : 10/5/2017 7:26:26 AM (GMT-6)


WorriedUCer
Regular Member


Date Joined Jul 2014
Total Posts : 339
   Posted 10/5/2017 6:23 AM (GMT -7)   
RISEagainst said...
You know what's going to eventually happen right? You're going to get a preforation and die of sepsis, or get colon cancer and possibly die. There is absolutely nothing wrong with surgery. Or pouchitis. They aren't comparable to the suffering that is a severe UC flare.


Why would you seriously say that to anybody, let alone someone on this forum who is going through the same illness you are??!! In what universe do you think that is supposed to be helpful, try and be a bit more sensitive to the struggles that other people are going through, it doesn't cost anything to not be a jerk

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8038
   Posted 10/5/2017 7:11 AM (GMT -7)   
RISEagainst said...
Connor77 said...
i have legal documents preventing them from doing it. I am extremely stubborn and I believe that my condition is caused by infections. If they take out my bowel the infection will just move elsewhere, or cause pouchitis. No thank you.


You know what's going to eventually happen right? You're going to get a preforation and die of sepsis, or get colon cancer and possibly die. There is absolutely nothing wrong with surgery. Or pouchitis. They aren't comparable to the suffering that is a severe UC flare.




don't be a dick -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

Uniform Charlie
Veteran Member


Date Joined Jul 2015
Total Posts : 514
   Posted 10/5/2017 7:28 AM (GMT -7)   
RISEAGAINST said...
When someone comes on here to brag about their illness and claim they've refused the proper medical treatments they need a reality check. I'm not sorry for speaking the truth. I'm sure as heck am not gonna pat him on his back for his "bravery" and perseverance for surviving the worst UC flares known to man.


What a weird interpretation of his post. He's just trying to gauge his disease severity vs. other people. I don't see any bragging going on. We all, at some point, explain our disease severity and symptoms on this forum and look for advice. That's kind of the whole point.
Male Mid 30's
Diagnosed Proctosigmoiditis (UC) February 2015
Current Meds: Lialda 1.2gm 2x daily, generic rowasa as needed
Perianal Abscess June 2015
Fistulotomy December 2015...Doc's still say it's UC, not Crohn's

Specific Carbohydrate Diet started June 2015. Still going strong.

"Happiness doesn't depend on who you are or what you have, it depends solely on what you think." -Dale Carnegie

RISEagainst
Regular Member


Date Joined Sep 2017
Total Posts : 34
   Posted 10/5/2017 7:30 AM (GMT -7)   
WorriedUCer said...
RISEagainst said...
You know what's going to eventually happen right? You're going to get a preforation and die of sepsis, or get colon cancer and possibly die. There is absolutely nothing wrong with surgery. Or pouchitis. They aren't comparable to the suffering that is a severe UC flare.


Why would you seriously say that to anybody, let alone someone on this forum who is going through the same illness you are??!! In what universe do you think that is supposed to be helpful, try and be a bit more sensitive to the struggles that other people are going through, it doesn't cost anything to not be a jerk


Au contraire. There are a few other people in this thread who aren't being sympathetic to him either. It's just easier for you to single me out though because I'm new. I'm not sorry if this kid needs to hear the reality. We should be honest with people on here instead of enabling them. Clearly this kid needs surgery. It's harmful to him to encourage him.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 10/5/2017 7:31 AM (GMT -7)   
How bad does mine get??? Chronic degrees of a flare for over 4 years....maybe 5. The worst was going 40+ times a day and vomitting at the same time. A nurse had to pick me up from the bathroom floor. The pain was so bad I was crying and screaming to my family that I wanted to die.

What saved me (as usual) is IVIG. Within 24 hours I went from 40 times to 17.....a week later I was going 4-6 times a day. Last year I developed fistulas and my disease changed from UC to CD. Humira/IVIG and now Stelara have helped my bowel. Up until Monday I was going normally 1-3 times a day. All formed. Now I'm regressing possibly due to all the new foods I was excited to try. OR the IVIG has destroyed the Stelara.

Connor---are you in TO/GTA?

Post Edited (U B Tough) : 10/5/2017 8:37:58 AM (GMT-6)


RISEagainst
Regular Member


Date Joined Sep 2017
Total Posts : 34
   Posted 10/5/2017 7:32 AM (GMT -7)   
Uniform Charlie said...
RISEAGAINST said...
When someone comes on here to brag about their illness and claim they've refused the proper medical treatments they need a reality check. I'm not sorry for speaking the truth. I'm sure as heck am not gonna pat him on his back for his "bravery" and perseverance for surviving the worst UC flares known to man.


What a weird interpretation of his post. He's just trying to gauge his disease severity vs. other people. I don't see any bragging going on. We all, at some point, explain our disease severity and symptoms on this forum and look for advice. That's kind of the whole point.


Interesting how you single me out. 2 other people thought the same thing. But you single me out instead.

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8038
   Posted 10/5/2017 7:48 AM (GMT -7)   
dinkydonuts said...
How are we supposed to react to this? I feel like most people here are trying to do various things to get better and to beat the disease to have a semi-normal life.

But it sounds like you are bragging about your suffering? You even admit that you are stubborn and know what the answer is...

We can't help you if you don't want to help yourself...




maybe you could just try to answer the OP's question - otherwise, shut it -

you wanna judge somebody, get a tv show -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

RISEagainst
Regular Member


Date Joined Sep 2017
Total Posts : 34
   Posted 10/5/2017 7:58 AM (GMT -7)   
TroubledTurds said...
dinkydonuts said...
How are we supposed to react to this? I feel like most people here are trying to do various things to get better and to beat the disease to have a semi-normal life.

But it sounds like you are bragging about your suffering? You even admit that you are stubborn and know what the answer is...

We can't help you if you don't want to help yourself...




maybe you could just try to answer the OP's question - otherwise, shut it -

you wanna judge somebody, get a tv show -


You shouldn't tell people to shut up. What happened to this forum? I used to browse this a year a go and it was people who actually wanted to help whether or not the answer was what you wanted to hear or not. Clearly something happened to this place. It's a shadow of its former self.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4819
   Posted 10/5/2017 8:00 AM (GMT -7)   
Connor,

Correct me if I missed something but you're not using Biologicals?

Again, I'll warn you about the risks involved with long term steroid use. I needed my hip replaced because of steroids.

Maybe UBT can write some about her MAP protocol experience.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226
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