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Posted 10/14/2016 5:19 PM (GMT 0)
I'm brand new to forums, and essentially brand new to Crohn's Disease (dx May 2016).

After diagnosis I was placed on Prednisone for 2.5 months and then switched to Cimzia. My strictured ileocecal area decreased in length from 9cm to 5cm after 3.5 months on Cimzia, but my Doctor thinks we can still do more to improve my condition with medication so she added 6mp, which I have now been taking for a week.

My quality of life is OK, but I am 25 and want to be able to be more than OK. I still struggle with constant dull pain in the LRQ. I have cramping every AM before my bowel movement and have occasional rectal bleeding. I've never had diarrhea with my disease, just pain (and in the past, fevers, fatigue and night sweats). I have no energy and feel pretty limited in terms of my diet because of the stricture. Ideally, I want to keep a healthy high-fiber plant based diet and have the energy to exercise more. I take an Align probiotic and a multivitamin as well as Vitamin D3.

I met with a surgeon and he thinks that I have had enough medical therapy and that my quality of life is poor enough that an ileocecal resection is warranted, if I want. I never thought I would be in the position at 25 of having to decide for myself if I should allow the doctors to cut me open or continue to live a life where I feel limited and in pain.

What are your experiences with making the decision to have surgery? Did it give you a better quality of life? For how long did you feel better after your surgery before either needing more surgery or feeling sick again?
Or for those of you on medical therapies, did you have strictures or inflammation that took 6+ months of therapy to resolve?

Thanks so much.
Posted 10/14/2016 6:29 PM (GMT 0)
I was in your spot when I was 24. Now I was not responding to any drugs, and this was before any of the big ones were available and I had a stricture of scar tissue.... but I went with a small bowl resection at the terminal ileum. It was the best decision I could have made for me. That was 16 years ago and I've been pretty darn healthy since. I'm meds free, disease free and pain free. Now I have had bouts if active disease in the past 16 years, but nothing to bad.

it different for everyone and there is no one size fits all. you have to weight your options and make the decision you feel is best for you. I chose surgery because I couldn't live the life I was living. Drastic was worth it.
Posted 10/14/2016 6:41 PM (GMT 0)
Jdiane,

Thank you so much for your reply.

Your story and stories like yours are really pushing me to go ahead with surgery. The surgeon said that he has never had someone come forward and say that their choice to have surgery was something they regretted.

Thank you again! :-)
Posted 10/14/2016 7:33 PM (GMT 0)
Yes, it is weird that surgery is always presented to the patient as a choice. Shouldn't the doctors have a good recommendation about what to do? Sadly there is rarely one right answer to how your disease should be treated. The GI is always going to want to stick with meds so he/she can fix it; the surgeon is always going to want to operation so he/she can fix it. I also have spoken about the "illusion of choice". Surgery is presented as a choice but if things are so bad that you are considering it, you likely don't have much of a choice.

A resection surgery will get rid of your stricture and any other inflamed portions of your intestines and would put you in remission. Adding the 6MP will likely not do anything. It's typically added to a biologic such as Cimzia to prevent the body from producing antibodies to the biologic (antibodies would stop the biologic from working). It probably would not make the biologic more effective, and it takes 3 months to start working.

How long will the remission last from the surgery? Unknown. You'll need to have a discussion with your doctor about maintenance medication after the surgery. Some people choose no medication and take that gamble, others stay on medication because Crohn's usually comes back. I had a resection surgery in 2000 and my only maintenance med after it was the pretty much ineffective Asacol. I was in remission for 2 1/2 years and then had a massive flare. I had my colon removed and an ileostomy added in April 2014. I'm at the 2 1/2 year point now and am still in remission. This time I've been on Entyvio the whole time.

Do not underestimate the amount of recovery time needed after a resection surgery. It can be several months, and there are always complications. It is not easy, even if the surgeon tries to spin it that way. Is it worth it? For me, absolutely yes. I probably would have died if I didn't have my colon removed, that's how bad I was. Beyond that, my quality of life has improved immensely, especially after I got my ileostomy. Living with a stricture is horrible, I have done that. Just the fear of eating the wrong thing and dealing with the next obstruction is a living hell.

Has either doctor talked about balloon dilation of the stricture? With this they go in like a colonoscopy and inflate a balloon inside you to try to open the stricture. It didn't work for me but at least they tried. That could be a third option here.
Posted 10/14/2016 8:00 PM (GMT 0)
bania,

Thanks so much for the lengthy reply and perspective. The illusion of choice is so true, and the fact that the GIs wanna go hard with drugs and the surgeon is all about doing surgery is something I should have seen coming.

My GI explained that adding 6mp would likely delay my body's production of antibodies against the biologic and also provided some data about the efficacy of combination therapy for remission induction/maintenance (in comparison to monotherapy) that seemed promising. But yes, she did explain that it would take 3 months to see the effects of the combination therapy. We scheduled a colonoscopy for me in 3 months that will confirm where I'm at. She also said that while she is performing the colonoscopy, if she is still seeing stricturing, she will attempt the balloon dilation.

Looking at the statistics for balloon dilation, it does seem pretty 50/50 on whether or not there will be re-stricturing within a year. I have no intention of going med-free, as my disease presented initially as quite aggressive (with a fistula and stricture) despite it being confined to a small area and that seems to indicate it will be more challenging to treat.

I wish I had some type of crystal ball. I'm a very analytical thinker and the numbers and statistics on the likelihood of any given outcome are never convincing. However one truth seems to be inescapable: people always say that surgery was a good choice for them.

I'm getting married in September and just want to be feeling well and ready to tackle this major life transition.

Thank you again!
Posted 10/14/2016 8:20 PM (GMT 0)
Since you like stats & numbers, I'll throw this out.

At a recent conference, the data from a survey was mentioned. They had asked something like 10,000 IBD patients who had had surgery whether they had it A) too soon B) at the right time C) should have had it sooner.

The results were something like this:
A) too soon - 30%
B) at the right time - 40%
C) should have done it sooner - 30%

(Numbers aren't right, I'm going off of memory here). But the point is, that means 40+30 = 70% of people thought they had surgery at the right time or even should have had it sooner.

Otherwise, you have been given excellent replies above, so I don't have much more to add.

I do have one question, just out of curiosity: Why did your GI put you on Cimzia first? Usually they try Remicade or Humira first, and Cimzia if you fail one or both of those. Not that there's anything wrong with Cimzia, I just find it a little unusual.
Posted 10/14/2016 8:37 PM (GMT 0)
beave,

Beave -- Thanks! That survey data is really interesting, and I think my surgeon may have actually mentioned it. I wish I encountered more people that fall into the "too soon" bracket just to hear their stories and see if mine is at all comparable.

Cimzia was chosen for me because of the data that shows it doesn't cross into placenta or breastmilk. I want to have children in a few years. I was surprised we didn't wait to try Cimzia until I was actually ready to have a baby, though. Do you now if there is any information on whether or not you can go off and then back on to certain biologics (as long as you haven't developed antibodies yet)?

Maybe it would make sense for me to have a resection in January (if the medications wind up not showing improvement by the time I have my colonoscopy in December) and choose either Humira or 6mp as my maintenance medication, and then go back on Cimzia when I'm ready to have children? Does anyone know if this type of therapy-switching is done successfully?

Thanks again for all the help. Very grateful for the support!
Posted 10/14/2016 9:50 PM (GMT 0)
A person *can* stop a med like Cimzia and then re-start it later, but it's risky to do so - the odds of a reaction go up. It's better to stay on a med consistently if possible, or to switch and then stay on the new med, not go back to the old one.

But I'm a little stumped about the Cimzia/pregnancy issue. One, you're not pregnant and don't plan to be in the near future, and two, Remicade, Humira, etc, are all safely taken during and after pregnancy by lots of women (including several on this forum). There's no reason you have to avoid those meds and take Cimzia.

Having said that, if you're on Cimzia and it's working, stay on it as long as you can (ie, as long as you tolerate it and it seems to be working).
Posted 10/14/2016 10:13 PM (GMT 0)
Thanks, beave.

I guess the decision about medications and pregnancy will be one to make with my GI and Gyno when I'm actually in the place where I'm preparing to have children. Maybe when I explained to my GI that I had concerns about the medications and pregnancy (because I planned on having children in a few years) she interpreted that I was expecting to get pregnant sooner that I intended. This is before I knew a lot about treatment options (and how they can wear off) so I figured it was a good choice.

At this point the Cimzia does seem to be working (my blood and stool tests are normal) and my x-ray showed my stricture went from 9cm to 5cm in 3 months. I am most curious to see if it (now in combination with 6mp) will continue to improve my condition, because I do still have daily pain and cramping and fatigue and I am at the point where I can't really imagine ever feeling "good" again. I'm starting to think that my "normal" is always going to include some amount of pain. However, the surgeon was convinced that these things don't have to be true.

The main question that remains, I guess, is, "How long do I keep waiting for medications to affect change before just having surgery?"

It's overwhelming, I guess. I'm extremely fortunate to be receiving excellent care from the Stanford IBD clinic and I am wondering the extent to which I should expect improvement before making a decision to have surgery.

Very grateful to have people to listen to my inner monologue... this disease is very mentally draining and isolating.
Posted 10/15/2016 2:51 AM (GMT 0)
Hi Humblewarrior, I would suggest investigating the dilation first. I was put on remicade and 6mp in the spring. When my symptoms persisted the GI did a colonoscopy and found stricture. He did a dilation but told me to start thinking about surgery because he could only expand it half way the first time and that if the procedure didn't work that would be the best option (a strictureplasty though, not a full resection). I was really concerned that surgery was in my future(I am rather high risk when it comes to surgery so that's the only reason I am hesitant about it) I had a second scope and found out that the first dilation was successful and the GI was able to dilate it further. I still get a bit bloated but overall so far it's been really successful. many people end up with strictures forming at the surgical site so I'd personally rather avoid that cycle if possible. I still get some discomfort and a variety of non GI symptoms (pain mostly and nausea, I haven't had diarrhea in 2 years even when flaring) but after this last remicade infusion I actually had two weeks with very little to complain about... Absolutely no Gi pain! It's slowly been creeping back in but I never thought I would feel so good again and I figured if the mess we're going to help anything the would have already so that was a surprise! I still feel fairly good compared to where I was a few weeks ago so I think it's worth noting that it is possible for drugs to eventually make a difference.
How long you wait, in my opinion is up to you. I would just ask tons of questions to everyone first. Good luck in your decision!
Posted 10/15/2016 9:58 PM (GMT 0)
labradorite, thanks for your insight. I guess it is possible for meds to continue to help even after months-- I wonder if the stricture dilation is what helped your symptoms or if it was the medications. Either way, in happy you're feeling good and surgery free!

I will hope for the best for my December colonoscopy. Hopefully she can do the investigative part of the procedure, and dilate the stricture if need be all in the same session. I also may still have an endoclip in my cecum from where they removed a polyp in April so she might have to remove it while in there as well.

She's a "big shot" GI at Stanford so I certainly have high hopes, but I haven't really had much go well for me yet, so I remain cautious. Hoping for the best, preparing for the worst. All I really want is to wake up and feel pain free. It sucks to be considered as a "low disease activity" patient and still be in a constant state of discomfort.

Thanks, all! You've really helped me.
Posted 10/16/2016 5:12 AM (GMT 0)
I had a colonoscopy and MRE 2 months or so after I started remicade and 6mp that showed only one small spot of inflammation so I know the meds did a lot to heal my digestive tract but it took two dilation a to clear up the nausea and discomfort I had. There was definitely a noticeable difference after the dilations because I could not eat solids before I had them. Bloating and distention got better but I still have some. At some point though while I was on these medications I developed body and joint aches and gut pain when I'd wake up. It was terrible to wake up every morning to GI pain and joints that didn't want to work as well as migraines that were interfering with my vision. We were starting to think the drugs were causing these symptoms because there were no other reasons and I did not get more than one day's relief from infusions but then this last one cleared everything up! Some of its creeping back in now but o am still waking up pain free on most days. So long story short it has been a combination of the dilutions and the medications. I definitely understand what you mean about having low activity and still having pain because that's what I was complaining of up until the last infusion and had my doctors at a loss pretty much since everything looks really good. I assume it was some kind of hidden inflammation in my case at least. I hope the scope goes well and that your doctor lives up to her reputation! Keep us posted!
Posted 10/18/2016 2:58 AM (GMT 0)
My son - now 20 - had an illeocecal resection seven months after his initial diagnosis in July 2015 (symptoms at that time were severe anemia and bloody diarrhea). His initial colonoscopy done at the time of diagnosis showed a stricture in the TI and inflammation in the sigmoid area of the colon. Four months later he started showing symptoms of his stricture which confused me because his inflammation and bloody diarrhea were almost immediately eliminated. (At the time of the diagnosis he was prescribed Ferrous Sulfate, Pentasa, remicade, Vitamin B, Azathioprine and a probiotic.) I had (wrongly) assumed that no inflammation meant no stricture or stricture symptoms. I was told his was "cold" and that it can and did grow despite the medications. He got very sick with his stricture (a lot of throwing up / losing weight / hospitalization) and the surgeon insisted he undergo surgery. For him it was the BEST decision. He has gained forty pounds, has normal stools, is no longer anemic and has no abdominal pain. He recovered amazingly fast from surgery (I think youth helps) and went back to college five days after. I don't know what you will decide and I know all outcomes vary but I am grateful his surgeon insisted he go for it. BEST to you as you move forward with lots of questions and decisions!
Posted 10/18/2016 9:35 PM (GMT 0)
Labrodorite -- Your situation sounds similar to mine! I really hope that she is able to dilate my 5cm stricture and that my drugs continue to help, so that I can get closer to feeling symptom free without surgery. This disease is so frustrating because all of the things that are supposed to help you take a lot of time (as far as the world of medicine goes) to really show if they're going to help you, so right now I feel like my life is going to wind up with more of my time being spent in pain than actually feeling "good." The doctors say this prognosis isn't realistic to assume, because more people with Crohn's spend more time feeling well than feeling in pain. Is it odd to feel like they're lying to me to try to make me feel better about my life?

Betty Sue, I am so happy that your son is feeling better after surgery! Sounds like he was having pretty severe disease and surgery was clearly going to help him with his stricturing.

I was surprised the surgeon was so convinced surgery would be right for me. My stricture causes pain and discomfort pretty much constantly but I don't have vomiting, weight loss, anemia, diarrhea, etc... so I'm not sure I'm a drastic move to surgery is the right one. It definitely is tempting when I hear so many stories about how people recover so well and have long remissions after surgery. But it is also scary to hear about people who, after surgery, have their disease come right back, deal with with persistent D, or continue to have scar tissue at the resection site.

Thanks again, everyone. Your stories are truly helpful!
Posted 10/19/2016 5:11 AM (GMT 0)
Having spoken to my doctor recently about surgery and the fact that I avoided it this time. He discussed how despite it being a rather straight forward surgery and necessary for some, complications happen even with the most skilled doctors and while most people make it through okay there are always a few that have complications that cause even more pain/illness so make sure you are fully aware of the risks. obviously if nothing else works, you need it. but in my opinion, give everything else a shot first. As you said there is no complete certainty that the surgery will take away your pain and its not something you can undo. For me, it was a combination and no quick fix. I had a few good weeks but I'm achy again and looking forward to my next remicade dose next month. I am definitely not anywhere as bad as I was a few weeks/ months ago. I'll take the bad with the good and I'm thankful i stuck it out this long because its being really confusing and frustrating and i easily could have given up on remicade. Just know you will have better days. They may be few and far between right now but give it time and keep fighting for answers from your doctors. sure someone in remission has more better days than bad ones usually but not someone who has active disease or strictures. They shouldn't be lumping you into some generality but should be trying to find ways to help you. I honestly can't believe they are making you wait for December to have the scope. It sounds like you need new doctors if you do not feel like you can trust them. You need to have a team, doctors you can work with and feel trust in. I definitely had times where i felt like i couldn't trust my doctors. they usually spoke at me instead of to me and I had a number of negative experiences. The current team took me quite a few years to find. they take me more seriously than even I take myself and I've had great results with them. I am always given the sense that they are on my side and want to figure out whats wrong even if it takes a while. Having good cautious docs has allowed me to relax quite a bit because i don't feel like i have to fight for answers or to get someone to listen to me.
Posted 10/19/2016 6:24 PM (GMT 0)
Labradorite,

Thanks for the reply.

Because they just added the 6mp, they want to wait to do the scope until it has had a chance to "kick in." I guess it is in my power to reach out and ask if we can go in beforehand, because it is increasingly uncomfortable to live this way.

I have been on 6mp for 2 weeks and I am struggling with nausea, headaches, and fatigue. Part of me hopes my labs show some toxicity so I can come off. I felt much better off of it.

I have confidence in my team but like I said, it just feels like it's a whole lot of waiting to see what works and what doesn't and in the meantime I just have to accept that I have to live in pain and/or with side effects of these drugs.

Feeling down today. I hope things start to look up soon.
Posted 10/19/2016 6:53 PM (GMT 0)
I'm so sorry that you're feeling kind of stuck. I hope it gets better for you soon.
Posted 10/19/2016 7:10 PM (GMT 0)
Ugh, I hated 6MP (and Imuran). I had similar issues with nausea, fatigue, and loss of appetite. "Luckily" I also got jaundiced with sky-high bilirubin so I had a good excuse to get off of those drugs. Yes, it is in your power to demand a scope before the 6MP starts possibly working. I would say do it. You sound like you don't want to live like this for another 3 months, and I don't blame you.
Posted 10/20/2016 1:26 AM (GMT 0)
That sounds so similar to what I went through. And I agree you need to contact your GI and express how bad you feel. They didn't know why I was nauseous and not feeling well after I started the meds in the spring and the obstruction was cleared. The GI did not want to do the scope too soon because he wanted to give it more time for the drugs to work so it would be an accurate gauge as to whether they were working. I was pretty overwhelmed with the nausea and inability to eat and some pain. It wasn't the worst but seemed to be getting worse. I agreed though that I really wanted to hold off to see if they were working. I started having major trouble with a hernia I have in the groin and had to see a surgeon. I had a feeling it suddenly acting up was related to the Gastro issues. The surgeon pressed on my abdomen and could tell it was causing me increasing pain and instructed me to call the GI imediately after I left. I did and he sent me for imaging that day and decided that the scope needed to be done two days later to get some answers. It helped quite a bit but not totally. Same with the repeated one. I felt a lot better but things were still off. I had long thought 6mp was the culprit of some of it but the doctor could not find any signs of 6mp being the issue so after everything, and me not being right, the 6mp was lowered to 25mg-too low to fight the crohns but enough to work against remicade antibodies. This stopped the nausea and lack of appetite completely (until I started a new heart medication which has nausea as the main side effect) so you could be very right that 6mp could be part of your problems.
Posted 10/22/2016 8:22 PM (GMT 0)
Many of you know my story:Crohns for 46 years.

Had 3 surgeries that have taken half my colon and about 10 feet of intestines. The surgeries DID take care of the problem, at that time. But these are the consequences:

Every time there is a resection, the scarring in the resection point (the anastomosis) starts the Crohns process all over again, major strictures. I am living with one right now for two years with partial obstructions coming and going. The last 3 GIs recommended not to have surgery until there is no absolutely no choice. This is because I have little intestine left. For now I am holding steady but eventually I will have no choice when the following happens:

1) The pain causes a fistula that opens a hole in the intestine, I had three simultaneous fistulas and one was then burrowing into the bladder. No choice to hold on here since this can lead to infection of the blood, septicimia and go into septic shock. If a fistula ruptures it can cause perforation, a life threatening condition that requires an immediate surgery. So #1, if you have fistulas you are heading into surgery.

2) Obstructions that cause massive pain, fever and vomiting. If you vomit more that twice a week the obstruction is getting so bad that you will need surgery.

3) No medications are working. I went through Humira for 3 years it worked then the antibodies caused it not to work. Went on Entyvio, after 7 infusions had to stop it, did not work at all. Went on Remicade and Imuran. The initial 5 mg dose did not work, now I am on 10mg and have no pain, the obstruction shows up once every two months so it is livable.

If you do not have the above my recommendation is that you try medication and diet first. However pain is not a good sign and if it gets worse you may need to have surgery.
Posted 10/23/2016 12:39 AM (GMT 0)
I think I waited too long for the re-section for whatever it's worth. I didn't get diagnosed with Crohn's until my mid 40's but the docs suspect I had it most of my life. No one even suggested surgery until I went to a U of Chicago IBD specialist who felt that my strictures were primarily scar tissue, so they never would have responded to medication. I lived for several years with chronic anemia, pain and two bowel obstructions prior to having surgery. At the time I did the surgery, I had an obstruction that wasn't improving with IV prednisone, so I really had no choice to make.
It has been 2 1/2 yrs since surgery and I've stayed in remission with no medications at all. I do have chronic challenges with IBS-D and cramping, so I can't say I feel fine. But I'm no longer anemic and lead a much better life than before surgery. I am older and the suspicion is that my Crohn's was mild and took years until it was to the point of structuring. With you at age 25, I suspect they will recommend maintenance meds. I hated 6MP too, but was on it for a very short time because my liver enzymes became too elevated.
If you want a colonoscopy sooner, it might be worth speaking up. It is encouraging that your stricture is getting smaller, so it does seem like you are responding to the meds. Hanging in a little longer if you can might be worth it. This disease sucks as there are no really good options....so sorry you are suffering!
Posted 10/24/2016 6:55 PM (GMT 0)
I was diagnosed and put on Prednisone and other drugs for 9 months. My GI doc and I talked about surgery. I went for a second opinion at The Cleveland Clinic. Specialist in Crohns said no need for surgery. I am still suffering daily though. So don't listen to me. I hope you feel better
Posted 10/27/2016 8:50 PM (GMT 0)
Thanks everyone for sharing your experiences. I'm sorry you've had to go through all of that!

It sounds like many of you had a lot of recurrent problems with stricturing, fistulas, obstructions, etc, and that eventually led to surgery.

While my disease presented itself with a 9cm stricture in the TI and a fistula connecting my TI to my appendix, meds seemed to have cleared these issues and I'm just left with 5cm of stricture in the TI. It causes regular pain and bloating, both relatively mild, but constant. Being in constant pain takes its toll at 25 years old.

I asked my doctor if we can do the colonoscopy sooner than December and described my experience with the 6mp side effects. The massive fatigue and nausea have waned after exactly 3 weeks on the drug and my labs keep coming back normal, so my team at Stanford is really encouraging me to stick with it so that in December, we can have a good idea of what the combination therapy is doing to help me (or not). They are encouraging me to just be patient. "The waiting place." My least favorite place. My surgeon is still waiting in the wings, insisting that he could make it all go away with surgery if I only ask.

I understand that I am relatively lucky and that as far as the disease goes, and it could be so much worse for me. I think the diagnosis is still a bit of a shock for me, so mentally, I'm dealing with anxiety and depression. I can't escape the feeling that at only 25, I will never know what it means to feel "good" again. I will always be dealing with something, whether it be the actual disease symptoms or the side effects from the drugs. Watching my friends travel the world and grow in their careers is really difficult, knowing that less than a year ago, I was doing just that.

Praying that if I can just make it through to December, the scope and potential dilation will at the very least give me some more data to help make a decision.
Posted 12/14/2016 11:46 PM (GMT 0)
Hi all!

So I had my colonoscopy, and my doctor found that the ~6cm area of mild narrowing (she could fit the pediatric scope through it) was 90-95% healed, with one small ulcer and a few tiny aphthae. The tissue of the stricture had some pseudopolyps on it, which I guess is a sign of healing. I'm still waiting for my biopsy results. She said the stricture was too long and not narrow enough to qualify for a balloon dilation.

She said this is good news and declared me in "remission" saying I'm having an "excellent response" to the 6mp/cimiza combo.

I was initially happy to hear this, but I'm still living with daily mild pain. I'm not sure if I should ever expect this pain to go away without surgery or if I will ever continue to improve. I'm starting to think I need to just accept that Crohn's for me = constant pain, even in remission.

I'm depressed to say the least. Have any of you had pain in the early phases of remission and had it go away? Or did you just live with it until surgery?

Thank you.
Posted 12/15/2016 6:08 AM (GMT 0)
Humblewarrior,

I am so sorry that you are going through this.

I was diagnosed with severe aggressive fistulizing crohns in 2014. I started being ill in 2012/2013. After I was finally diagnosed in 2014....the pain never went away. I started Remicade with methotrexate and still had pain. I had a colostomy Sept. 2016. (After 2 balloon dilations of the sigmoid in 2016 which did not work for me. The surgeon removed 9 cm of the sigmoid, left the rectum and the rest of sigmoid for a reconnect after we clear my fistulas) The colostomy bag has its advantages. Now I only have to go to the bathroom 6 or 7 times a day to empty it. My blood tests show that I am in remission; however, my Remicade level after 4 weeks is low. I still have pain...a constant ache. We are increasing my Remicade amount. Hopefully that might help. I am scheduled for a colonscopy in February.

Medication or Surgery does not guarantee remission nor a pain free existence...unfortunately. Its very much the luck of the draw. Everyone is different. I hope you are much luckier than I have been. Please know that statistically I am not the norm.

Please keep us informed.

Clo

Yes the surgery improved my quality of life in some ways. I am glad that I was placed on the Remicade as it healed the majority or my colon. I will continue with Remicade until it no longer works for me...and yes every once in awhile I would have a pain free day.
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