What would you do in my situation?

[ccerulean]

Hi, so a little background... I was diagnosed a year and a half ago after intense ubdominant pain. Didn't have many other symptoms before diagnosis, had loose stool from time to time but nothing that I thought was serious. My main symptom since the initial episode has been PAIN -- stabbing pains which lead to cramping, which resides to an always-present dull ache in my RLQ.

Been on Pentasa since Feb 2014. Four months of entocort didn't do much. Started azathioprine in Oct 2014. An MRI a couple weeks ago showed 8 cm mild to moderate scarring and inflammation in the distal ileum. Prior CTs and X-rays over the last year all showed the same thing. My last big flare up was three months ago but I consistently have that RLQ ache. Right now I would say I definitely feel better than I did in October. However, I still feel "unstable." That is, eating a particular food or too much exertion can randomly set off the pain again. I am constantly worrying about what I can or can't eat, can or can't do, in fear of triggering the pain, which usually lasts a day or so.

My dr is concerned I'm still showing symptoms (as mild as they may be compared to others -- I realize I am lucky in that regard) and would like to discuss moving up to biologics. I'm not opposed to this, but wonder if they would actually get rid of the symptoms remaining. I know pain from the scar tissue can never be fixed by meds, but is there a chance I can feel somewhat "normal" again? What would you do in my situation? Thanks for your advice.

 

[rubberduckie1313]

I don't have any experience with scar tissue, so I can't speak to that, but I can tell you my experience with biologics. Once you find one that works for your inflammation, it is amazing. I have what is considered moderate Crohn's, ulceration in my terminal ileum and descending colon along with in my rectum, but we have always been able to reign it in after awhile, which I consider myself really lucky in that regard. Most the time when it gets out of hand I can go on a round of Prednisone and that helps immensely. I was on Remicade for 8 months and the months it worked, I felt almost normal, I mean pre-Crohn's normal. I only wish it had worked longer, but after shingles and a kidney infection it didn't work as well. Humira did not work at all for me but, now I am on Cimzia. Within about two weeks I was feeling a difference (not common, biologics take a bit to work, sometimes up to 6 months). I will not go back on my decision to use biolgics, even though my case is not as bad as others, they are giving me my life back one injection at a time. I hope you are able to find something useful in this post. Good Luck!

 

[shamrock15]

Scarred is scarred. If it isn't too bad and you haven't lost much functioning, you may be able to go without surgery for it as long as you are a little careful. Remicade should keep it from spreading and getting worse. I have been on remicade for about 7 years now, and they have been the best 7 years in the last 30 of my life. It literally was a life changer for me. Wish it had been available 10 years before!

 

[David]

I'd likely go on the biologic in an effort to get into deep remission. I'd want to avoid that scarring getting worse and having to have surgery or risk a blockage.

 

[nkrrrz]

I did 4 years with pentasa and went to humira. It was like I didn't have the disease. I felt great, could eat better, had better BMs, and it was glorious. I would highly suggest it.

Unfortunately, with biologics, they can stop working as well as they did. After 2 years, I had 2 abscesses and a colectomy. I see a specialist 7/8 to discuss maybe upping the dosage or switching.

Hi, so a little background... I was diagnosed a year and a half ago after intense ubdominant pain. Didn't have many other symptoms before diagnosis, had loose stool from time to time but nothing that I thought was serious. My main symptom since the initial episode has been PAIN -- stabbing pains which lead to cramping, which resides to an always-present dull ache in my RLQ.

Been on Pentasa since Feb 2014. Four months of entocort didn't do much. Started azathioprine in Oct 2014. An MRI a couple weeks ago showed 8 cm mild to moderate scarring and inflammation in the distal ileum. Prior CTs and X-rays over the last year all showed the same thing. My last big flare up was three months ago but I consistently have that RLQ ache. Right now I would say I definitely feel better than I did in October. However, I still feel "unstable." That is, eating a particular food or too much exertion can randomly set off the pain again. I am constantly worrying about what I can or can't eat, can or can't do, in fear of triggering the pain, which usually lasts a day or so.

My dr is concerned I'm still showing symptoms (as mild as they may be compared to others -- I realize I am lucky in that regard) and would like to discuss moving up to biologics. I'm not opposed to this, but wonder if they would actually get rid of the symptoms remaining. I know pain from the scar tissue can never be fixed by meds, but is there a chance I can feel somewhat "normal" again? What would you do in my situation? Thanks for your advice.

 

[Charlotte 2]

I did 4 years with pentasa and went to humira. It was like I didn't have the disease. I felt great, could eat better, had better BMs, and it was glorious. I would highly suggest it
Unfortunately, with biologics, they can stop working as well as they did. After 2 years, I had 2 abscesses and a colectomy. I see a specialist 7/8 to discuss maybe upping the dosage or switching.

Hi, I've had Crohn's Disease since 1973,1st of 2 resections between the sm & lg intestines (terminal ileum) 2nd resection was in same area! Once Crohns disease gi tissue there's not much to prevent poss blockage. Once one starts vomiting...get to er, poss bowel blockage was culprit for me.Intl trial a NG tube,nothing by mouth,Allowing our bowels to rest with hope of some relief. Had iv cortisone... scar tissue too is troublesome. I try my best to have no MSG, no vas producing foods, no carbonated bev, the less gas produced the better oor gi can feel. My best gas relief is Simethicone, over counter.mild mint easily chewed,not hard at all. I learned from GI surgeon, the intestines can be cut, stapled, burned & they don't cause pain. The gi pains come from the "smooth muscles " & nerve fibers around tgem as our gi tries to STRETCH due to pressure from distended gi! (( enteric nervous system"is like our bodys 2nd Brain! i could write onn & nnon. I lesrned so much from fellow Crohnies ;-) via Crohn's- Colitis Support Group,mtg monthly. Wow the tips shared were great. Esp confronting my GI about ckg me for vit B12 def...No Dr its not how much was removed, its "what area was removed"! He had me do special tests & Bingo... FYI- Vit b12 is absorbed thru the terminal ileum, the area that it conn to lg intestine! I self Admin. Mo B12 inj since 1987! Hope I didnt omit something, Im detailed & wordy. That's me!
Peace & Respect

 

[my little penguin]

Ds moved to biologics and finally got relief
No scar tissue as far as we know but he is young
He starred biologics at age 8 and is now 11
Good luck

 

[Ian_H]

Hi, so a little background... I was diagnosed a year and a half ago after intense ubdominant pain. Didn't have many other symptoms before diagnosis, had loose stool from time to time but nothing that I thought was serious. My main symptom since the initial episode has been PAIN -- stabbing pains which lead to cramping, which resides to an always-present dull ache in my RLQ.

Been on Pentasa since Feb 2014. Four months of entocort didn't do much. Started azathioprine in Oct 2014. An MRI a couple weeks ago showed 8 cm mild to moderate scarring and inflammation in the distal ileum. Prior CTs and X-rays over the last year all showed the same thing. My last big flare up was three months ago but I consistently have that RLQ ache. Right now I would say I definitely feel better than I did in October. However, I still feel "unstable." That is, eating a particular food or too much exertion can randomly set off the pain again. I am constantly worrying about what I can or can't eat, can or can't do, in fear of triggering the pain, which usually lasts a day or so.

My dr is concerned I'm still showing symptoms (as mild as they may be compared to others -- I realize I am lucky in that regard) and would like to discuss moving up to biologics. I'm not opposed to this, but wonder if they would actually get rid of the symptoms remaining. I know pain from the scar tissue can never be fixed by meds, but is there a chance I can feel somewhat "normal" again? What would you do in my situation? Thanks for your advice.

Sorry about your situation! But I understand. I unfortunately can't take prednisone anymore due to glucocorticoid induced osteoporosis. So about a month ago started remicade and have noticed small improvements. It's still early as it can take up to 6 months for efficacy. But I already am feeling better. Also like others posting before me said, biologics, if the work, are a life saver! I was very nervous to start but even with the small improvement a month in think that it will significantly help in the long run. Best of luck!

 

[Lady Organic]

are you at the maximum dose of AZA?