Thinking of doing surgery

[Maryam]

thinking of doing surgery

Hello All,

I am writing on my husbands behalf. He has been having crohns for 18 years has taken all the meds and currently he is taking Remiciade. The effect wears off after 4 weeks and till next infusion he is in a lot of pain. we are worried about the side effects of remiciade specially the nasty ones like cancer.

he has his inflammation in small intestine. we are wondering if surgery would be a good option for him. I don't know how well resections work but I have heard that that inflammation can come back in another location.

Has anyone had permanent surgery for inflammation of small intestine. any suggestions advice would be appreciated. from what I understand if he does do the surgery at least he won't to deal with the side effects of Remiciade.

Maryam,

 

[Terriernut]

Hi Maryam, I moved this post to the General section, because I think you will get alot more responses. Especially since you were asking about a resection. Many, many on here have had surgery for resections with very good results!!!

 

[dresslma]

Hi Maryam! I have had Crohn's for 15 years now and have had a bowel resection and am currently on Remicade. My bowel resection surgery went fine even though it was under weird circumstances. I tried the surgery to go into remission but it became necessary 2 weeks before scheduled because my intestine collapsed completely. Being young with the surgery I recovered fine and was released a few days after surgery. My surgery wasn't permanent and unfortunately my disease came back a little over a year later.

I feel like I am in a similar situation to your husband because my Remicade is only working for about a month instead of the 8 weeks it should so I go through 4 weeks of cramps, pains, urgency, and bloody stools. I will be going to my doctor in a couple weeks to discuss alternatives and options. All in all I would say to discuss with his GI what he thinks. If you feel like surgery is a better alternative to medication then go for it. But remember that just because the disease part of the colon is removed doesn't meant that the disease can't come back. Good luck and I wish you and your husband well! Hope he feels better soon!

 

[Scifimom]

I had surgery and small bowel resection. It was a emergency since I suffered an abruption during an appendectomy (I was also diagnosed at the same time). I stayed a week in ICU, 24 days in the hospital and took me more than 6 months to recover. I bled so much in the surgery I needed 10 bottles of blood to replace it. Within less than a year and while I was more or less still recovering I flared again and went on Humira. I am on humira for more than a year and the docs say I am in remission. I feel ok but still have symptoms like diarrhea fatigue mouth ulcers and blood in my stools from time to time.

 

[Maryam]

Hi Maryam! I have had Crohn's for 15 years now and have had a bowel resection and am currently on Remicade. My bowel resection surgery went fine even though it was under weird circumstances. I tried the surgery to go into remission but it became necessary 2 weeks before scheduled because my intestine collapsed completely. Being young with the surgery I recovered fine and was released a few days after surgery. My surgery wasn't permanent and unfortunately my disease came back a little over a year later.

I feel like I am in a similar situation to your husband because my Remicade is only working for about a month instead of the 8 weeks it should so I go through 4 weeks of cramps, pains, urgency, and bloody stools. I will be going to my doctor in a couple weeks to discuss alternatives and options. All in all I would say to discuss with his GI what he thinks. If you feel like surgery is a better alternative to medication then go for it. But remember that just because the disease part of the colon is removed doesn't meant that the disease can't come back. Good luck and I wish you and your husband well! Hope he feels better soon!

Thanks for the info and advice. I am just wondering what is next after a small bowel resection? can one opt to have an ileostomy or j pouch if that might prevent the disease from recurring. yes we are thinking to see different GI and get their perspective.

 

[Terriernut]

Maryam, with crohns in the small bowel, I dont think a stoma would be possible. I could be completely wrong. But stomas generally tend to be for either bypassing the large bowel or after large bowel removal. If there is someone out there that can give further information on this, please do. For instance, I had my sigmoid bit of colon removed, and have a colostomy. Others have had their large bowel removed, and have an ileostomy.

As for a J pouch, they are usually for people with Ulcerative Colitis that have had their large bowels removed. Generally people with small bowel crohns have resections/removal of the diseased tissue.
Hope that helps.

 

[Maryam]

Maryam, with crohns in the small bowel, I dont think a stoma would be possible. I could be completely wrong. But stomas generally tend to be for either bypassing the large bowel or after large bowel removal. If there is someone out there that can give further information on this, please do. For instance, I had my sigmoid bit of colon removed, and have a colostomy. Others have had their large bowel removed, and have an ileostomy.

As for a J pouch, they are usually for people with Ulcerative Colitis that have had their large bowels removed. Generally people with small bowel crohns have resections/removal of the diseased tissue.
Hope that helps.

thank you Terriernut, so small bowel resection is the only option. what if the disease comes back then I think one has to go back to Remiciade, Humira and all those drugs.

 

[Terriernut]

I think you may have to look into further maintenance drugs yes. But only if and when it comes back. He may find that after all the diseased bits are gone, a lighter drug works to keep him in remission for years and years.

Keep the faith hun, a resection may do him wonders.
:rosette2:

 

[bkbigfish]

Maryam, I had 12 inch of small bowel removed and some colon back in Feb-2011 and this was by far the best thing I have ever done! I regret waiting so long to get it done. I have heard of Crohns coming back soon for some people, but I am still ok. I would gladly go through it all again to feel like I do! I know being in good general health really helped with recovery, good luck to your hubby! Billy.

 

[Maryam]

Maryam, I had 12 inch of small bowel removed and some colon back in Feb-2011 and this was by far the best thing I have ever done! I regret waiting so long to get it done. I have heard of Crohns coming back soon for some people, but I am still ok. I would gladly go through it all again to feel like I do! I know being in good general health really helped with recovery, good luck to your hubby! Billy.

Thanks Billy,

we talked to his GI and he seems pretty certain that surgery won't help him. I still don't believe what the GI is saying. we are thinking of talking to other doctor and Surgeons. where did you have the inflammation? my husbands inflammation is in his small intestine and some parts of colon.

 

[Maryam]

I think you may have to look into further maintenance drugs yes. But only if and when it comes back. He may find that after all the diseased bits are gone, a lighter drug works to keep him in remission for years and years.

Keep the faith hun, a resection may do him wonders.
:rosette2:

Thanks Terriernut,

His GI was not very supportive and says the inflammation could come back. but we are going to talk to more GI's and surgeon. thank for all your support

 

[Maryam]

I had surgery and small bowel resection. It was a emergency since I suffered an abruption during an appendectomy (I was also diagnosed at the same time). I stayed a week in ICU, 24 days in the hospital and took me more than 6 months to recover. I bled so much in the surgery I needed 10 bottles of blood to replace it. Within less than a year and while I was more or less still recovering I flared again and went on Humira. I am on humira for more than a year and the docs say I am in remission. I feel ok but still have symptoms like diarrhea fatigue mouth ulcers and blood in my stools from time to time.

yes GI says there is a possibility that crohns could flare and come back after surgery.

 

[Maryam]

Hi Maryam! I have had Crohn's for 15 years now and have had a bowel resection and am currently on Remicade. My bowel resection surgery went fine even though it was under weird circumstances. I tried the surgery to go into remission but it became necessary 2 weeks before scheduled because my intestine collapsed completely. Being young with the surgery I recovered fine and was released a few days after surgery. My surgery wasn't permanent and unfortunately my disease came back a little over a year later.

I feel like I am in a similar situation to your husband because my Remicade is only working for about a month instead of the 8 weeks it should so I go through 4 weeks of cramps, pains, urgency, and bloody stools. I will be going to my doctor in a couple weeks to discuss alternatives and options. All in all I would say to discuss with his GI what he thinks. If you feel like surgery is a better alternative to medication then go for it. But remember that just because the disease part of the colon is removed doesn't meant that the disease can't come back. Good luck and I wish you and your husband well! Hope he feels better soon!

yeah we talked to his GI and he thinks that surgery is not the best option for him. we are going talk to more surgeon and GI. it is just that I am really scared of nasty side effects of Remicade. thanks for all your support

 

[dans30thta]

I had surgery in 1994 and I had 15 good years with no major flare ups..I was really lucky, was off of all medicine all that time too. I am still doing pretty good, but a couple years ago I had a major flare & the doc put me on Imuran(Azathioprene) I have responded well to it..so bottom line, I would recommend the surgery. I had about 24" taken out in 2 sections..I believe the inflamation came back in one of the re-sections(which is common).