My teenage son had his colon removed and awaits j-pouch surgery, waiting on inflamed end piece of colon/rectum to heal. Trying enemas. Dr wants him to undergo Remecade IVs, but I'm scared to death of that. Anyone been through this? They say they can do surgery with 50% improvement, does not have to be completely healed, but I worry about pouchitis. Also, I want surgeon to do protocolectomy and take the diseased section out. Any advice welcome!
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Jpouch surgery consists of removing the entire diseased rectum except for about 1 to 2 centimeters of 'cuff' in order to perform the anastomosis connection. I had the traditional surgery and suffered for a long time with inflammation of the cuff(cuffitis) and it is quite unpleasant to day the least I'm not sure I am following your post correctly but it sounds like they are going to leave your son's rectum in which I would not recommend. Most people look to have jpouch surgery for a cure or at least a vast improvement of their disease symptoms. At a 50% improvement, I see no benefit with this approach and only the possibility of needing continual remicade to keep you son's rectum in remission and more eventual surgery to remove the diseased rectum. As a side note, I had UC for 25 years with no severe rectal disease or issues in the anal area until after my surgery. Please note this is just my opinion as someone who has struggled with chronic inflammation of the remaining rectal cuff and anal canal since surgery and some of my issues may be surgery related versus disease related. Does the surgeon has experience with proctocolectomies?
Jeane, Thank you for replying! We are trying to avoid the trouble you have been having. I'm awaiting the doctor's response about taking all of the rectum. If he is not wanting to do this, I think we will wait on surgery until he completely heals and we can learn more.
Is Remicade as awful as it sounds?
Lorie
Is Remicade as awful as it sounds?
Lorie
Sounds like you should find a more experienced surgeon. One that can remove his rectum and you won't need the remicade, one of the reasons people have the surgery. Cleveland maybe?
Lori,
You may need to research remicade's risks esp with young teenage boys. I think the risk of lymphomna may be greater (not sure if this is with remicade or humera), as a mother contacted me recently with a teenage son who has been very ill and they are on the fence between opting for surgery or the biologics and she was very concerned about the heightened lymphoma risk, particularly in teenage boys, from one of the biologics.
Maybe the surgeon is thinking if they can heal the rectum, they will have more success with the anastomosis connection at time of jpouch creation, which makes sense to me. It would be tough to go in and remove the rectum except for the cuff with it being severely diseased and create a clean anastomosis connection, because scarring can develop from the inflamed tissue, something I believe contributed to my stricture and some issues I have had. On the other hand, surgeons prefer a patient be off steroids, if possible, at time of surgery, to aid healing and I would think the same holds true for the biologics.
I am sorry you are facing this decision. I do think another surgical opinion would be very helpful to you.
Maybe the remicade would be very short lived to get the tissues healed and surgery can begin shortly after stopping it.
You may need to research remicade's risks esp with young teenage boys. I think the risk of lymphomna may be greater (not sure if this is with remicade or humera), as a mother contacted me recently with a teenage son who has been very ill and they are on the fence between opting for surgery or the biologics and she was very concerned about the heightened lymphoma risk, particularly in teenage boys, from one of the biologics.
Maybe the surgeon is thinking if they can heal the rectum, they will have more success with the anastomosis connection at time of jpouch creation, which makes sense to me. It would be tough to go in and remove the rectum except for the cuff with it being severely diseased and create a clean anastomosis connection, because scarring can develop from the inflamed tissue, something I believe contributed to my stricture and some issues I have had. On the other hand, surgeons prefer a patient be off steroids, if possible, at time of surgery, to aid healing and I would think the same holds true for the biologics.
I am sorry you are facing this decision. I do think another surgical opinion would be very helpful to you.
Maybe the remicade would be very short lived to get the tissues healed and surgery can begin shortly after stopping it.
Rectal inflammation is NOT predictive of future pouchitis. Everyone with UC has rectal inflammation.
That said, anastomosis of the j-pouch is more difficult in the presence of more rectal inflammation, so if the inflammation is severe right now, it makes sense that the surgeon is hesitant to move forward. Just in the past week or so I've seen a few posts around the board here by people who felt that rushing into j-pouch construction when they had severe rectal disease led to problems down the line.
Who is recommending Remicade -- the surgeon or your son's GI? Whoever it is, the *other* one may have other ideas about alternate methods to control the rectal inflammation enough to improve the surgical outcome. I had moderate inflammation in the rectum after my colectomy and my GI prescribed sodium butyrate suppositories, for example.
That said, anastomosis of the j-pouch is more difficult in the presence of more rectal inflammation, so if the inflammation is severe right now, it makes sense that the surgeon is hesitant to move forward. Just in the past week or so I've seen a few posts around the board here by people who felt that rushing into j-pouch construction when they had severe rectal disease led to problems down the line.
Who is recommending Remicade -- the surgeon or your son's GI? Whoever it is, the *other* one may have other ideas about alternate methods to control the rectal inflammation enough to improve the surgical outcome. I had moderate inflammation in the rectum after my colectomy and my GI prescribed sodium butyrate suppositories, for example.
I was on Remicade for a short period as a last resort before jpouch surgery. I didn't want to take it but I was even more scared about the surgery. I have talked to people who have had better luck with remicade but it was a bad experience for me. It did nothing for my U.C. and gave me more symptoms than before I had started taking it. Everyones body reacts different to medications though. It definitely is a tough decision 
sorry your son is going through this.
sorry your son is going through this.
In general, all medications have risks. On the positive side Remicade has been around for a long time, is considered relatively safe and has helped thousands of people.
On the other hand, we all have to draw our own line with treatments and it is essential that we feel comfortable before proceeding.
My wife tried everything including trying to get into a drug trial. We actually drew our line at Tysabri. It is a drug that offered some therapeutic hope but came with the risk of a fatal brain disease. We knew in our guy that was our line.
Good luck,
Dan
On the other hand, we all have to draw our own line with treatments and it is essential that we feel comfortable before proceeding.
My wife tried everything including trying to get into a drug trial. We actually drew our line at Tysabri. It is a drug that offered some therapeutic hope but came with the risk of a fatal brain disease. We knew in our guy that was our line.
Good luck,
Dan
The lymphoma risk is pretty low, and it is more in regard to those with rheumatoid arthritis (who are already at a higher risk). Using it in combination with other immune modulators increases the risk, particularly over a long period of time. Yes, the risk is higher in the pediatric and adolescent population, but it is still quite low. The fact that he would be only using this short term means that the safety profile is much greater than those who are anticipating long term maintenance use.
It can take up to three months for any of the biologics to have a full effect. After that time period, if there is no response, there is no point in continuing. I am presuming that topical steroids are not effective?
In my mind, the bigger question would be the possible increased risk of post op sepsis while using this drug in the immediate pre op period. I would rather just do the completion proctectomy and j-pouch procedure without it. There are risks any way you slice it, and since this is not about preserving the colon or rectum, if it were my son, I would want some compelling reason to consider it at this point.
My two cents, but I think you need a lot more information and convincing from his doctors, besides just a recommendation. I am not sure where they get the 50% healing notion in order to do the surgery. Being refractory to treatment is the reason for the surgery!
Jan
It can take up to three months for any of the biologics to have a full effect. After that time period, if there is no response, there is no point in continuing. I am presuming that topical steroids are not effective?
In my mind, the bigger question would be the possible increased risk of post op sepsis while using this drug in the immediate pre op period. I would rather just do the completion proctectomy and j-pouch procedure without it. There are risks any way you slice it, and since this is not about preserving the colon or rectum, if it were my son, I would want some compelling reason to consider it at this point.
My two cents, but I think you need a lot more information and convincing from his doctors, besides just a recommendation. I am not sure where they get the 50% healing notion in order to do the surgery. Being refractory to treatment is the reason for the surgery!
Jan
Thank you to everyone for your caring posts and information. It really helps.
I spoke with both the GI and surgeon today, and they plan to do a proctocolectomy, removing all the diseased remaining few inches of colon and the rectum, leaving a cuff. They want my son to have 2 doses of the Remicade IV, while continuing hydrocortizone enemas before scoping to be sure that inflammation is down before surgery. After much consideration we are willing to undergo two treatments of Remicade in order to heal him for surgery. Are we on the right track?
Seems reasonable enough. However, I would ask the doctors what evidence there is that 2 doses of Remicade would have a significant positive effect; more than the colectomy, diversion, and steroid enemas.
If this is just a stab in the dark, I would pass on it.
Jan
If this is just a stab in the dark, I would pass on it.
Jan
The side effects of Remicade scared the devil out of me! I opted for the 2-step J-pouch surgery and went from about 20% to over 90% of quality of life. I had mine done at the Cleveland Clinic (self referred I might add because I was sick of taking meds that were not controlling my UC) and have had a couple hernia problems requiring surgery since but probably my fault as I gained back 30 of the 50 pounds I had lost while being sick.
Best of luck to you as it is certainly nerve racking and so much to try to understand!!
Best of luck to you as it is certainly nerve racking and so much to try to understand!!
My 18 year old daughter had remicade treatments and felt really great after the first couple of treatments, she has since had 1 step j pouch surgery and is doing great. I think a couple of treatments before he has surgery really wouldn't be enough to have to worry about the side effects. I do understand your fears, I had them myself, uc is just awful! Cathy. All the Glory is Gods
I appreciate your taking the time to reply and encourage. Time will tell if this treatment will reduce inflammation enough for surgery. We will scope after two to see if we need a third or more. Hopefully not. Again, thanks!
If it helps, this article indicates that using Remicade before surgery does not increase surgical risks.
http://onlinelibrary.wiley.com...7d34c94dbd6f056ad94a
Jan
http://onlinelibrary.wiley.com...7d34c94dbd6f056ad94a
Jan
Sounds to me like the surgeon wants the inflammation in the rectum down prior to surgery to make the anastomosis (connection of j-pouch to the rectal cuff). Severe inflammation could make the rectal cuff more prone to bleed, harder to work with, etc.
After my surgery, my surgeon's associate visited and said my "path" (pathology) was not typical. I had a LOT of inflammation in my rectum and he asked if I had been having trouble prior to surgery. My surgeon has a real issue with steroids before surgery (lots of data to back up the fact that complications are greater when on steroids), and I could tell her associate did not agree with her approach. He would have had me on prednisone prior to surgery.
Anyway, I doubt a couple doses of Remicade is going to hurt him. It's not like the medicine in and of itself is a cancer-causing agent. It's the fact that it reduces your immunity - lessening your body's own cancer-fighting ability. Being immune-suppressed for such a short time shouldn't be a concern I wouldn't think.
That said, I agree with Jan there would seem to be a lot less expensive medicines to treat inflammation - but maybe your surgeon, like mine, wants to stay away from steroids.
Steve
After my surgery, my surgeon's associate visited and said my "path" (pathology) was not typical. I had a LOT of inflammation in my rectum and he asked if I had been having trouble prior to surgery. My surgeon has a real issue with steroids before surgery (lots of data to back up the fact that complications are greater when on steroids), and I could tell her associate did not agree with her approach. He would have had me on prednisone prior to surgery.
Anyway, I doubt a couple doses of Remicade is going to hurt him. It's not like the medicine in and of itself is a cancer-causing agent. It's the fact that it reduces your immunity - lessening your body's own cancer-fighting ability. Being immune-suppressed for such a short time shouldn't be a concern I wouldn't think.
That said, I agree with Jan there would seem to be a lot less expensive medicines to treat inflammation - but maybe your surgeon, like mine, wants to stay away from steroids.
Steve