Why wouldn't you go for surgery!? *rant!!*

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qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 7/5/2009 4:24 PM (GMT -6)   
I've just about had enough of UC!! I'm sick of my life being ruled by it. I have not been in remission for the past 18 months since I was first diagnosed because they just can't seem to find anything that works consistently.
 
The Azathioprine doesn't seem to have kicked in yet, and although my symptoms have improved since being in hospital I just am getting to the point where I cannot cope with the tiredness and almost constant tender stomach etc etc. I'm STILL not able to work full time and that in itself is hard enough.
 
I just don't want to stay on this concoction of drugs any longer, especially as they have potentially dangerous irreversible side effects. And because even the short term side effects are hard enough to deal with.
 
I've grown to accept over the past couple of years that this is how my life will have to be...but why?! None of us should have to live our lives like this. So my question is...why havn't more of you gone for the surgery?! I've got Proctitis so I'm not sure how common it is for them to operate on that seeing as it is such a small part of the intestine?! But I sure as anything am getting to the point where I just want it out!!  
22 year old female, from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect! Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
20mg Prednisolone tablets, 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository, Asacol suppository (alternating nights)1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety), Probiotic Multivitamins, Nutren Build up drinks. 
                             
                             


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 7/5/2009 4:29 PM (GMT -6)   
Honestly? Because I'm scared. I'm scared I'll have complication from the surgery... I'm scared it wont help as much as they say it will.. I'm scared that I'll still have issues with living my life after surgery...pertaining to the bathroom.. and then there won't be anything for me to do... AND IM REALLY SCARED that if it doesn't work...I'd have to have a permanent ileostomy bag.... I dont want one for the rest of my life..


if not for those fears.. I'd go ahead and have the surgery like...right now.
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
 
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 7/5/2009 4:30 PM (GMT -6)   
I'm considering it...
Would I rather be on medications for life? I don't know. I know I can't do Prednisone any longer and if the Remicade doesn't work, I don't know what else to do. If the Remicade does end up working, do I really want to be on a drug that new for such a long time? I'm only 26. Ugh

Oh, does anyone know if I would have to wait a certain amount of time after a c-section before having the surgery? I know they tell you not to have a repeat c-section with a year or 18 months, and isn't it a c-section cut?
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
15 mg Prednisone AM, 10 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09 (2 infusions so far)
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/5/2009 4:40 PM (GMT -6)   
If all of the meds fail me and my quality of life isn't what I want it to be, I'll have surgery. I'll try Remicade (or whatever new meds are available first), but if nothing works anymore, then it's out with the colon. I've already decided I won't let UC keep me from living my life. Go ahead and look into surgery!
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 7/5/2009 4:46 PM (GMT -6)   
oh, and something else that scares me about surgery is that i read somewhere about possible infertility/issues with pregnancy after. is there any truth to this?
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
15 mg Prednisone AM, 10 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09 (2 infusions so far)
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/5/2009 4:46 PM (GMT -6)   

Surgery is all about regaining quality of life.  If you feel you have compromised quality of life and have run the gamut of medicines than surgery should be considered.  It doesn't matter how little or how much of your colon is affected.  My disease was primarily limited to the last 3cm of my rectum.  A very tiny spot that took 2 years of my life.  Honestly I never gave the limited diagnosis much thought; I just wanted my life back. 

If nothing else you should at least consider a consultation with a very qualified CR surgeon.  It will help to answer many of the questions you might have regarind the procedure.  A consultation does not commit you to surgery but is part of the investigative process.

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


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 7/5/2009 4:48 PM (GMT -6)   

I'm seriously thinking about it, I've always had it in the back of my mind, but never thought too much into it because I've never been one that minds taking medications (even though its irritating to have to take so much). But its since I've been suffering the side effects, and potentially irreversible side effects, and that I've actually become steroid dependant, I'm thinking is it worth carrying on with this?! Especially when its not even improving things THAT much.

My only concern is...as mentioned in my first post in this thread - how common is it for Proctitis patients to have surgery? And would they remove just the last section of the intestine or take out the whole thing? It just seems that the majority of people who have the surgery are those that have a large area of their intestine affected.

And also my consultant isn't one to take into account just how bad I'm feeling so I'm not sure he'd agree to it..his last comment to me (after he'd admitted me to hospital twice!) was 'Proctitis is generally not a condition that affects your life or how you feel, its just annoying and hard to get rid of.' I nearly fell off my chair....not affect your life or how you feel?! I think its a bit more than that. On the other hand tho my IBD nurse in fantastic and so understanding.


22 year old female, from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect! Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
15mg Prednisolone tablets (tapering), 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository, Asacol suppository (alternating nights)1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety), Probiotic Multivitamins, Nutren Build up drinks. 
                             
                             


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 7/5/2009 4:51 PM (GMT -6)   
suebear said...

Surgery is all about regaining quality of life.  If you feel you have compromised quality of life and have run the gamut of medicines than surgery should be considered.  It doesn't matter how little or how much of your colon is affected.  My disease was primarily limited to the last 3cm of my rectum.  A very tiny spot that took 2 years of my life.  Honestly I never gave the limited diagnosis much thought; I just wanted my life back. 

If nothing else you should at least consider a consultation with a very qualified CR surgeon.  It will help to answer many of the questions you might have regarind the procedure.  A consultation does not commit you to surgery but is part of the investigative process.

Sue 

Thanks suebear...you posted that just as I was writing my last reply!
You have the same area affected as me then - how much of your intestine did they take out? And did you go to see a CR surgeon to help you make the decision?


22 year old female, from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect! Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
15mg Prednisolone tablets (tapering), 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository, Asacol suppository (alternating nights)1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety), Probiotic Multivitamins, Nutren Build up drinks. 
                             
                             


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/5/2009 4:54 PM (GMT -6)   

Tell your consultant to walk in your shoes for one day if he thinks that it can't be that bad!  For any patient with proctitis or UC that is dx as steroid dependent; it's that bad.

As mentioned, my UC was limited to my rectum and to a very small spot of it.  Everything else looked good but it all had to go and at that point I wanted it all to go and I wanted to move on with life.  If you don't remove the rectum and the colon the UC will come back.  Your surgeon can explain this to you. 

 

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


WIMOMOFTHREE
Veteran Member


Date Joined Apr 2009
Total Posts : 654
   Posted 7/5/2009 4:58 PM (GMT -6)   
I know I will need surgery at some point in time.  I'm scared though.  I'm trying remicade very shortly(just waiting to get it all set up) and my GI just told me that there will be a time when medication doesn't work for me anymore.  So, I'm preparing myself.  It is hard.  I just started pred again for the second time about a week and a half ago.  I had my daughter in June 2008 and I was having D since I was 6 months pregnant with her.  I was diagnosed in March of 2009.  It just keeps getting worse.  I haven't been out of this flare in over a year now.  It is horrible.  I think about my life now and I miss so much.  I'm scared of surgery but on the same hand I kind of want it because I can't live like this.  I'm SO TIRED.  I'm in a daze all day and I sleep alot(10-13 hours a day).  I just don't feel right.  Someone told me if the remi don't work by then I will want the surgery and I agree.  I'm scared though.  I have UC throughout my whole colon but from what I've read on here even if you only have it through part of your colon the symptoms are the same and so is the quality of life.  I agree no one should live like this.  Good Luck.

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/5/2009 5:11 PM (GMT -6)   

I had the entire proctocolectomy because that is the standard surgery for UC no matter how much of the colon/rectum is affected.  A surgeon worth his salt will not do a partial colectomy on a UC patient in my opinion because the disease will return to the parts remaining.  My GI was not in support of my decision; I made the decision while lounging in the hospital with a severe flare.  A nurse came to see me and told me she had the jpouch surgery a few years ago.  Listening to her describe her agonizing life with UC to her new life post UC I knew that surgery was my best choice.  The nurse was healthy, active (a marathon runner) and had no diet limitations.  All the bad things that I was told about life with a jpouch were not true according to her.  And they aren't true according to my experience either.  I can't tell you how much it meant to me to meet a jpoucher face to face.  Her experience and the consultation with a surgeon sealed the deal for me.

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


lucasJ
Regular Member


Date Joined Apr 2009
Total Posts : 178
   Posted 7/5/2009 6:06 PM (GMT -6)   
i would do it in a heartbeat if they would let me, but i have only done the 5asa's so far, so they probably would not do surgery without more meds first. I see my doc thurs for a sigmoidoscopy, see what is going on and why i can't shake the watery d.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 7/5/2009 6:16 PM (GMT -6)   

My daughter just had the one year anniversary of her surgery (July 3). When she was first diagnosed at 15-1/2, we wouldn't even think about heavy hitting drugs let alone surgery. Three huge flares later, having gone through almost all the meds and becoming prednisone dependent, she chose surgery. She never needed to be hospitalized. She "just" missed 9 weeks of school three separate times. For her, it is the best decision.
She had a fabulous senior year of high school. UC is a memory for her.

Fertility may or may not be an issue (they can't be sure). We knew this going in and discussed it in depth. My daughter's feeling was that she would rather have to deal with IVF or another form of fertilization or even adopt rather than have to worry about how the "big gun" drugs would affect her the rest of her life, when (not if) she would have another flare, what would it be like when she flared (again not if she flared) while pregnant, and flared as a mother of young children, etc. She worried about what she would do when she flared as an adult who had to hold down a job to keep her insurance and make ends meet.

She had a full incision (from just above her belly button to her pelvis). The surgeon did a phenomenal job and it has healed beautifully. The scar fades more and more. She is not ashamed of her scars (she calls them war wounds or tattoos with better stories). She is out today at (yet another) graduation party wearing a tankini.

While it was hard to make the decision as a 17 year old, she knew it was the best time for her. She has no major responsibilities. She is under our insurance still, she doesn't have to support herself. She is looking forward to college.

My daughter was in remission when she had her surgery. The surgeon said her colon didn't look terrible (as you often hear). After surgery, he said you must feel better now that your colon is removed. She said no (because she had been in remission at the time). But she still knows it was the right decision for her.  She didn't want to wait until it became an emergency.

Surgery is a very personal decision. You need to be ready for it (unless it is an emergency). Definitely consult with a surgeon. Get names of people from the surgeon of patients who have gone through it. We spoke with a girl who had similar experiences as my daughter (diagnosed about the same age, similar reaction to drugs, surgery around the same age, etc).


--Mom of bratcat (18 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect! Living and loving life as a teenager should!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/5/2009 8:32 PM (GMT -6)   
pam-it is possible that the surgery can cause fertility issues.  But the meds can too, plus the possible harm they can cause to the baby.  I struggled so hard with the decision to have a baby i still had UC thenand was on meds.
 
lucas-you dont have to try all the meds, i tried immuran and asacol and told the GI i wanted surgery he said he would set up an appt but why didnt i try remi first, so i did that and 6mp.  And that was all i tried and i had surgery.  you dont HAVE to try a bunch of meds.  GIs are almost always gonna be against surgery they are always gonna wanna try this and that. 
 
My decision for surgery was not made lightly and i look back now and i am like, WHAT was wrong with me that i didnt do this when i first got sick???
And i totally understand how scary it is, and if you are considering it, be sure to read what lots of people have to say, and ask lots of questions!
good luck to all of you

qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 7/6/2009 2:11 AM (GMT -6)   

This is why I love this site! Thankyou so much everyone for your opinions and input, its given me a lot to think about. I wasn't aware that the surgery may possible cause infertility problems...hmm! But then the meds I'm on or possibly going to be put on next are possibly going to do that anyway. What a horrible decision to have to make!

But thankyou so much for your replies, they are a huge help. I'm going back to the hospital for my appointment in 2 weeks so I'll discuss it then. :-)


22 year old female, from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect! Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
15mg Prednisolone tablets (tapering), 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository, Asacol suppository (alternating nights)1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety), Probiotic Multivitamins, Nutren Build up drinks. 
                             
                             


Shaz032
Veteran Member


Date Joined Feb 2003
Total Posts : 1251
   Posted 7/6/2009 5:26 AM (GMT -6)   
I think that a lot of people feel that by saying yes to surgery, they're 'giving up'. They feel defeated. They don't want to let UC beat them by having surgery. If only they could realise that, by agreeing to surgery, they're not giving up. They are, in fact, fighting this disease and they're going to win by getting rid of that nasty colon that's causing them so much grief!

Hindsight is 20/20 they say. You'll be hard pushed to find anyone who actually regrets having surgery once they've healed (though there are some, it's a very small minority - and not having surgery for fear of being in this small minority is like saying I'm not going to cross the road cos of the small minority of people who get run over and I fear it could be me. Yes, it's a possibility, but most people will make it across without a problem). Yes, there can be some bumps on the way, just like with any surgery.

The vast majority of ostomates are glad they've done it (even if they do get some complications) and find it's all very worth it in the end.

Good luck.
Ileostomy for 33 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 7/6/2009 7:46 AM (GMT -6)   
I will avoid surgery until I am told my life is in danger. I have dealt with the symptoms of UC for over 15 years now. I have sacrificed my quality of life over the past 15 years. If I were to have surgery now by choice, the past 15 years could be in vein. I am waiting for better meds and treatments, and hoping something comes out soon for the sake of everyone with UC and Chrons.
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:No longer on Pred as of 6/15/09, 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections monthly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 7/6/2009 8:21 AM (GMT -6)   
Hi all,
Knowing that it helps to hear from others who've been there, I thought I'd throw our story in the ring too.  My daughter was dx'd at 19 in Aug 06, 4 months later, her colon was so diseased, it fell apart in the surgeon's hands.  She had one long relentless flare and we were scared out of our minds about all of the drugs and the very idea of living without a colon and all of the possible complications until she had two young ladies who'd been through the surgery visit her in the hospital.  You must be thinking, "4 months is nothing" but, it felt like I was watching her die before my eyes...blood transfusions, hemmorhaging, all the drugs that weren't working, it was the right decision for her...her life truly was in danger.   
 
She's 22 now, is about to start her senior year of college, is having the time of her life with her friends, can eat anything she wants, goes to the bathroom 4-6x a day, but she does take an industrial strength probiotic to keep pouchitis  (**) at bay (VSL #3 DS)-prescribed by her CS and paid for by insurance.   She took a year off from school to get through surgery and recovery; yes there were a couple of bumps along the way while awaiting takedown, but it was the right decision for her. 
 
As you can see from my signature, she's had some complications (osteonecrosis) from the Prednisone, but we're dealing with that too.  I can't imagine what she may be facing had she stayed on the medications longer or tried more of them before going to surgery.  Many countries recommend surgery before the docs here in the US do because the side effects from the medications are worse than the disease itself when surgery can give you your life back. 
 
(**) Read as much as you can about bacteria and its effects on the gut.  I'm absolutely convinced that although the docs say that UC isn't diet related..why then would her colorectal surgeon recommend a good probiotic for the rest of her life?  Why do certain antibiotics work to reduce flares?  If antibiotics sometimes work, why not take a more natural approach with probiotics and reduce the toxic effects of medications on your body?  Hindsight is 20/20, but I wish her flare wouldn't have been so aggressive and given us more time to research and find VSL #3...maybe she'd still have her colon and maybe the bones in her joints wouldn't be dying. 
 
 
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
VSL #3 DS
21 yo Daughter diagnosed with right shoulder, bilateral wrist, 
bilateral elbow, bilateral knee, and bilateral ankle avascular necrosis
(aka Osteonecrosis) as a result of Prednisone use
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 7/6/2009 8:53 AM (GMT -6)   
I'm in the minority, but I wouldn't have surgery unless there were no other option. Removing a major organ and living life with an abnormal digestive process is not something I'm prepared to do unless I have no choice. Even in the early days when I was extremely ill and desperate, I had a strong sense that my body and my health were in my own hands. It was up to me to educate myself on UC, autoimmune diseases, how the digestive system works and what can cause things to go haywire. I collected a library of digestive health books and read everything I could get my hands on. It didn't take long to realize my diet and lifestyle had certainly contributed to my condition. I was in a moderate to severe flare for the first two years solid. There were times I was discouraged, times I felt sorry for myself and times I didn't want to live. But some stubborn part of me kept plugging along, kept praying, kept learning, kept experimenting. It was a long, tough road, but I don't regret my decision to avoid immunosuppresant drugs and surgery and work on positively rebuilding my health. The reward has been about eight years of remission with only minor problems (usually due to getting lax with my diet) and a scope last week indicating no signs of inflammation.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 7/6/2009 9:00 AM (GMT -6)   
I agree that surgery is scary, but I find the side effects from colitis medicines to be even more scary. Plus, if I'm going to have to get my colon taken out anyway, then why take all those medicines only to have to get my colon taken out in the end? It seems like the only people who benefit from going this route are the pharmaceutical companies and doctors.

I would talk to my surgeon before getting surgery if I planned to get pregnant just to make sure the surgeon doesn't do anything stupid that would make it difficult for me to become pregnant.
Joy - 47 yrs and counting; Colitis Dec 06 (also have IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

Lexapro (for stress), Probiotics and Vitamins, Anti-inflammatory foods, No pro-inflammatory foods when flaring, No HFCS, No foods high in fructose, No artificial sweeteners -- Fecal transplantation worked, Prednisone stopped working, Colazal stopped working, Asacol stopped working


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 7/6/2009 10:56 AM (GMT -6)   
As usual I agree with Princesa.
Removing part of your body that was meant to be there should be a last resort. You can't undo it, once it is done. Find out the complications and how will it really be after it is removed.

Have you tried everything you can? Diet?, Maybe slowly ween yourself of the drugs and see if you have a change or try an older drug like Sulfa. I think for many people they become allergic or intolerant to the drugs over time and can actually make things worse. Maybe even try a juice or water fasting.

qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 7/6/2009 2:08 PM (GMT -6)   
I agree with you Princesa and Zippy123 that it really must be a last resort. And it certainly wouldn't be a decision I enter into lightly. But on the same hand I agree with subdued that the potential side effects from the medications to me are more scary than the actual op. The main major concern I have with the surgery (apart from the obvious) is the issue with fertility. But it seems to me that this is a potential problem whilst taking Azathioprine and also the stronger drugs such as Methotrexate and Remicade anyway.
 
Diet is not something I have tried in a big way as of yet, I have lactofree milk/yoghurts due to being slightly lactose intolerant and I have also figured out certain foods that don't agree with me so I avoid them.
 
I am just sick of having my life controlled by this...and I know I could have it so much worse but at the end of the day I feel it is bad enough as it is. I'm only young yet I'm so tired I can barely go out other than going to work, and can't even manage full time there.
 
Pah...don't you just love having this! smilewinkgrin
22 year old female, from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect! Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
15mg Prednisolone tablets (tapering), 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository, Asacol suppository (alternating nights)1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety), Probiotic Multivitamins, Nutren Build up drinks. 
                             
                             


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 7/6/2009 2:40 PM (GMT -6)   
Yeah, my biggest concern is the fertility issue. I do have one child but I want another in 4-5 years. I had not heard that Remicade could cause fertility problems.
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
15 mg Prednisone AM, 10 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09 (2 infusions so far)
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 7/6/2009 2:44 PM (GMT -6)   
pam222 said...
Yeah, my biggest concern is the fertility issue. I do have one child but I want another in 4-5 years. I had not heard that Remicade could cause fertility problems.

I could be wrong, sorry! I had read on a couple of sites online that they think it could but not definite. But then you can't believe everything you read! The internet is full of info that might not even be correct.
22 year old female, from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect! Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
15mg Prednisolone tablets (tapering), 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository, Asacol suppository (alternating nights)1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety), Probiotic Multivitamins, Nutren Build up drinks. 
                             
                             


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 7/6/2009 2:59 PM (GMT -6)   
qwerty1 said...
pam222 said...

Yeah, my biggest concern is the fertility issue. I do have one child but I want another in 4-5 years. I had not heard that Remicade could cause fertility problems.


I could be wrong, sorry! I had read on a couple of sites online that they think it could but not definite. But then you can't believe everything you read! The internet is full of info that might not even be correct.


I just hope it doesn't. It's all so scary really. Having the surgery, being on the medications. Nothing sounds good :(. Of course, we have no choice. We have the disease so what else can we do?

Oh, yeah, I read waaaaay too much on the internet while pregnant and just worried about everything. Don't use google while pregnant :D
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
15 mg Prednisone AM, 10 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09 (2 infusions so far)
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success

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