I'm so so scared...

[Sea_Star]

...of what I "may" have done to myself. I'm sorry to keep repeating on this forum but it's the only way I am able to feel at peace

2010(diagnosis)-2013: rocky treatment; non-compliant with 6MP at first since my disease is not typical (no diarrhea)...just had abdominal pain and some rectal bleeding (at diagnosis) and the risk of cancer floored me, when I felt well overall. Did a 3 month Entocort round, then Pentasa for a month, then "took" 100 mg 6MP starting Oct 2010 (not consistently)...an MRE April 2011 showed inflammation now in sigmoid, mid-ileum, ileum....doctor wanted to add Humira. I said whoa...not that severe! Went to Mayo Sept. 2011, total remission, nothing was found except C Diff. Elevated ALT due to 100 mg of 6mp, so they suggested dropping to 50 mg 6MP. Mayo in Florida raised it to 75 in early 2012. From 2012-early 2013 I was doing fine (MRE in April 2013 showed thickening...but was just inflammation). Felt great, came off meds.

Was 100% fantastic for almost 2 years.Decided to have a peek at my colon, so i went back to Mayo Florida in May 2014. Colonoscopy showed mild inflammation (no cobblestoning). Prescribed 50 mg 6mp. Me being the asymptomatic stubborn Crohnie, I went locally to a Dr who prescribes LDN. June, started to have lightboard pains (literally, like 1 spot in each corner of the abdomen lol) so was prescribed 6mg Entocort. Took that and tried SCD.
I was on 6mg of Entocort from June 2014-Sept. 2014; had to start it again after one month because I had RLQ pain come back. Been on 9mg Entocort ever since.
Started 50mg 6MP last week of October, held off due to reactions, restarted Nov. 10. 2014. January 09 2015, upped it to 75 mg and had abdominal pain 2 days later. Slightly elevated Amylase, so I stopped and restarted it. I figured out that abdominal pain was most likely the gastritis and duodenitis caused by Entocort (found in August!)...it happens to me, I know Entocort is not supposed to , but when I was on it in 2010, it gave me gastritis too.

ANYWHO....so I've been on 75 mg 6MP for 2 weeks consistently, and on it since November (in total). Entocort? Looord I have been on that since June, minus a month. Longest I've ever been. Funny thing is, the CT scan last June showed assymetrical inflammation; this CT scan in January of this year showed mild inflammation.
Every time I try to taper, the RLQ and LLQ pain comes back...

I'm going to jump off a bridge if I have developed scar tissue. I don't know what to do...I ran away from 6mp but now more than anything I want it to work I will never ever forgive myself for letting myself get into this position; I could have avoided all of this if I had just stayed on the meds, or at least gone back on it in May...not November!

Do you think I'm steroid dependent? Is it the cortisol withdrawal that is increasing the pain? How come I was able to get off Entocort in 2010 after 3 months(despite inflammation still being there) but this year, after 5 months on it, I'm having pain when tapering

I'm so scared; wouldn't a Biologic promote scar tissue??

*aaaand exhale...* So sorry for the vent :shifty:

 

[bsteingas]

Hi Sea Star, over 20 years ago I was severely ill with Crohn's & had excruciating vaginal-rectal abscesses. My gastroenterologist wanted to start me on 6MP, but he scared me so much by saying I could get a cold, it could turn to pneumonia & I could potentially die from it as I would have no defense mechanism as my immune system would basically be shut off. That is when I decided that I had to find another way & started to think of it like a puzzle that needed solving. One puzzle had gotten me ill so another one had to get me better & all I had to do was find the right pieces. I discovered body, mind, emotional & spiritual strategies to help me put my puzzle together. I've been verbally sharing my story with people & I finally am getting familiar enough with the computer that I just started a blog where each post will describe one strategy I used.
The abscesses I used to have are now healed, but I still have scar tissue from it. I also was on prednisone in the past for short periods of time - I started on my journey to get off meds by going to Dr. Robert Atkins (he has since passed away) & he gave me a bunch of vitamins/supplements (unfortunately I can't remember which ones because I was so sick at the time that my memory wasn't that good then) to help with the inflammation & allow me to wean off my meds. There are more holistic doctors around now than back in the 1980's that might be able to help give you advice what you can do to help reduce and eliminate the inflammation & possibly get off the meds or at least help them work better.

 

[Cross-stitch gal]

I don't think you're steriod dependent. It may just be taking some time for the correct medication or the correct amount of medication to work. In the past, I had a doctor that would put me on prednisone every time I had a flare. I now am with a different doctor who does things differently. I hope that things will start calming down for you. In the meantime, we're all here for you. Hang in there. Sending lots of hugs your way.

 

[afidz]

I have never heard of a biologic promoting scar tissue. It stops or slows the body from attacking, giving the body a chance to heal.
I know scar tissue can be a big deal, but specifically what are your worries?
If you are still experiencing pain after prolonged steroid use, maybe its time to try a different med or do something different. Its at least worth the conversation with your doctor. Have they done any blood work recently to see if the 6mp has reached theraputic levels?
Hang in there, keep staying strong.
Hugs

 

[24601]

Forming scar tissue is what my gut does best so I can relate to that fear very well. But it doesn't sound like you have any strong evidence that this has happened for you - any narrowing seen on scans that you don't mention? Try not to worry too far in advance and don't beat up on yourself. You are not the only non-compliant patient and you are not the only patient who has been worried about trying certain medications and then worries that they should have tried them sooner.

It's also important to remember that we can't go back and change the past and that stressing about it will potentially be detrimental to your health now and in the future. And also even if we could go back and change out treatment decisions, we still can't know the effect that would have had on our disease progression. I've been caught in similar thought processes myself at times (and still occasionally find myself thinking along those lines) but we can't know for sure the difference it would have made and I think you should give yourself a break and not blame yourself for something that you can't know for sure would have made a difference.

And even if this situation that you are understandably afraid of does in fact arise, I think you will find the strength to deal with it. It will very likely be just fine, even if you have scar tissue that requires surgery at some point.

I'm interested to see your last question about biologics promoting scar tissue as that's something I haven't really heard in a long time - and I think isn't the case, or not significantly so. It was something that was often said in the early days of Remicade, I think perhaps based around the idea that the faster healing might be more likely to cause scar tissue to form. When I first had the option of having Remicade in 2001 prior to my first surgery for many, many severe strictures I was told that they believed (at that time) that it might worsen the strictures and cause me to require emergency surgery. I was apprehensive enough about surgery and turned it down on the basis that I'd rather have it on a planned day and not be worried about obstructing completely. Looking back this may not have been the wisest decision on my part because it was a really big deal for my doctors to get approval to fund my treatment with infliximab at that time in the UK and I wasn't offered it again after my surgery (or even after my second surgery!) It might have helped me get into remission, or saved some small bowel. Perhaps if they'd given it to me before surgery they'd have carried on giving it to me afterwards and it would have changed the course of my disease. Perhaps I'd never have had surgeries 2, 3 and 4. Maybe. And then maybe not. Maybe they'd have given me one dose and that would have been it. Maybe I would have had a mediocre response to it as I did when I tried it after my 3rd surgery. I'll never know and I know I could waste my life thinking of all the 'if only' scenarios that have come up in the treatment of my Crohn's. We have to try to understand the thought processes that we were going through when we made those past decisions. They may not look so sensible with the benefit of hindsight and the knowledge we have gained but the fears are understandable. I could share many, many more of my 'maybe' and 'if only' situations that can plague me at times but I really just want to say that you are not the only one to feel that weight of responsibility and regret about past treatment decisions but all we can do is learn from them and do our best moving forwards.

I think you should be open to the idea of using a biologic - it might be the thing to get you off Entocort and feeling healthier.

 

[my little penguin]

Hugs
DS has been on biologics for 3 plus years ( he started at age 8)
No
Scar tissue if anything his scopes look pristine no imflammation nada
He was also on 6-mp for 8 months in second grade
Let me tell you he did not get anymore colds than my other kiddo and did not end up with anything weird either -this is being exposed to coughing hacking little school kids everyday .

Have you had a fecal cal recently ? Bloodwork ?

 

[dave13]

Here's my 'what if' story,one of my 'what if' stories anyway. I think we all have a few of them.

I went close to ten years with undiagnosed fistula. I know now they were fistula but I thought they were very bad hemorrhoids. I resisted having them checked out,I knew nothing about crohn's disease at the time. I ended up in the emergency room for an unrelated issue. My previous job I used a lot of NSAID's and had rectal bleeding. The ER doctor suggested I have a colonoscopy,I was 48 and was due for one soon anyway.

I was referred to a GI and the colonoscopy was scheduled. I figured the GI will see the ' hemorrhoids',they were oozing and hard to miss. The colonoscopy was done. I had a few ulcerations from the NSAID's but my colon looked good. He told me to stop the NSAID's and said nothing about the 'hemorrhoids'. Hmmm,I thought,they can't be too serious if the doctor didn't mention them.

I could of found out then I had crohn's and started treatment. I didn't push back for answers I didn't really want to hear. He was negligent and I was in denial.

A year and a half later I end up in the ER for a complete blockage and need an emergency resection asap. After the surgery I found a new GI closer to home. I told him about my 'hemorrhoids' and he took one look and had me talking with a colorectal surgeon the next day. He was gobsmacked my previous GI did nothing.

I have five fistula and three draining setons now. He warned me a colostomy was likely if the setons did not work. I started Remicade the week after the fistulotomy.

My point? What if I would have been proactive years ago? What if I would of called the first GI on his negligence? What if...but I didn't. Perhaps I could of avoided the resection if Crohn's would have been diagnosed earlier. Perhaps.

What I consider important is what I am doing now. Eyes wide open and dealing with this disease. Punishing ourselves for what we should/could have done is easy to do,but we shouldn't. It holds us back from healing.

My long winded way of saying please don't beat yourself up about what ifs. It's what you do now that is important.

FYI I have had Remicade infusions since July. I was worried about my immune system being compromised. Not to jinx myself,but I have been healthier than my co-workers. Each one of them has been sick and they seem to keep passing it back and forth amongst themselves. I had one bout with a cold this season and have been fine otherwise. We are all different,I know,but I don't seem to be more susceptible since starting Remicade. I had an infusion yesterday.