After Ilestomy Reversal Advice needed

Get a prescripion of LOMOTIL to cope with the diarrhea.  Radiagel available at wallmart will relieve your bun burn.  Good Luck to you!

bowels

I had even tried opium for about 1/2 year.  Nothing good came from my efforts.  I now have a permanent ileo.  The MD Anderson Poop Protocols (Bowel Training Guides) might be of some help.  They ultimately did not help me enough to make a difference, but they might offer you some aid/assistance.

https://www.mdanderson.org/patients-family/diagnosis-treatment/emotional-physical-effects/bowel-management.html

Good luck and be patient!

hard stool

ask your doctor for Hydrocortisone cream 2.5%  Rx strength. You didnt say how much of your colon was removed? this is important because the lower part retains water. This benifit is lost once its removed..so you need plenty of water, just before I go to the tolet I drink a large glass of water [helps a lot].Also try Probiotic's and when its unbearable use a enima

 

I got a reversal after 6 weeks with ileo bag.  Developed a fistula at ileo site. so more weeks with bag.  Fistula healed itself from inside out.   Lucky me!!  In the seven years since, I still occasionaly get diarrhea.  Sometimes to the point where I need LOMOTIL to stop it.

But for the most part, I live a normal lifestyle.  Maybe it is just me, but I would reccommend reversal to all who have the option!!!

Good Luck to all.

 

Jamimasucci - pain management shots for scar tissue

Just wondering what type of pain management shots you are trying to help the scar tissue pain.

I had anal cancer several yrs ago and now have a small intestinal stricture, as well as my new diagnosis CRC with mets to liver now (drs say radiation caused scar tissue which narrowed that area).  I get partial blockages that cause very painful spasms that can last several hrs if it is really bad - awful.  I don't eat or drink until passes - feel I don't want to work the intestinal muscles or nerves?? to get the food through.  The only thing that I think helps a bit is ibuprofen (think it reduces some of the inflammation that might be contributing to blockage).  This has been very frustrating, as no dr has really been able to help me. At the time, I was diagnosed, surgery was contemplated, but then I was told scar tissue could build with resection. Also worried about the other organs and how they have been affected by so much previous radiation.  I have followed a "low residue diet" since to try to reduce the chance of blockage - foods that digest easily, little fiber, no seeds, grains, nuts, fresh veg, fruits, etc - not the healthiest, but supposed to help reduce chance of blockage, so I stick to it pretty much.  

Would appreciate knowing what the shots are called and if you find them helpful.  Wishing you the best.  Thanks for your help.  

I had my ileostomy reversal January 2016 and it has been very frustrating. It has been a long road and I also feel like my life revolves around pooping. Be patient because it gets better, slowly. I still have days when I may go 5 - 8 times and sometimes I don't go for several days. Try not to get to frustrated, we are fortunate ones that were able to have a reversal.

Small intestinal stricture

Hi Brownnurse - You asked how I knew I had scarring.  About 5 yrs after having several pelvic rad treatments for AC (2005), I had extremely painful spasms - went to ER, where they did a CT scan and upper GI.  Was diagnosed at that time with small bowel stricture - Onco checked the radiation field from previous cancer, and confirmed that this area of the small intestine would have been in the rad path and caused the scarring, which contricts the intestinal area.  A colonoscopy cannot reach that area of the small bowel, and since then I have not had a procedure that picked up the scarred area.  Was going to have surgery but concerns were that scar tissue would build there anyway, so have tried to deal with it for yrs following  a "low residue diet".  I still have had about 8 partial blockages - extremely painful spasms that can last for hrs - ended up in ER about 3 times and the rest I deal with at home - rest, no food until spasms pass.  I did find that taking Ibuprofen helps, as I think it is also associated to infllammation in that area.  It is frustrating, as most of my CT scans of the abdomen since have not seen this stricture.  You would think that if I have a scarred, narrow area, it would always show in the CT scan.  I have heard that blockages can be hard to confirm with diagnostic tests, but they sure wipe me out.  Also get more minor ones that can make me feel pretty crappy, bedridden, but not as long as the partial ones.  

I find the fulfir chemo that I am on really upsets my system - I have suffered with constipation issues - have taken miralax daily for about 5 yrs now (foods with too much fiber bulk and can cause blockages so not recommended for low residue diet). The chemo and meds aggravate and complicate my side effects - more issues with constipation and diarrhea than others might experience.  Always trying to adjust with miralax, sennakot S, and then immodium if swings the other way.  My Gastro Dr said miralax is the safest for ongoing constipation - does not want me to have laxatives that bulk - have a great dietician, who considers the foods that should not be in my diet, and those that will help prevent blockages in that strictured area - I listed some in my above post.  I hope you can find some relief - if you have a strictured or scarred intestinal area, I do think a low residue diet, because these foods are digested more easily, (although restrictive, and some items not so healthy, and can be more time consuming to prepare) can help to reduce the painful spasms you get with a blockage. For instance, in order to get certain veggies, fruits you may have to juice them, cook until very soft, remove skins, seeds, etc.  Hope this helps a bit.

Bellen said:

Small intestinal stricture

Hi Brownnurse - You asked how I knew I had scarring.  About 5 yrs after having several pelvic rad treatments for AC (2005), I had extremely painful spasms - went to ER, where they did a CT scan and upper GI.  Was diagnosed at that time with small bowel stricture - Onco checked the radiation field from previous cancer, and confirmed that this area of the small intestine would have been in the rad path and caused the scarring, which contricts the intestinal area.  A colonoscopy cannot reach that area of the small bowel, and since then I have not had a procedure that picked up the scarred area.  Was going to have surgery but concerns were that scar tissue would build there anyway, so have tried to deal with it for yrs following  a "low residue diet".  I still have had about 8 partial blockages - extremely painful spasms that can last for hrs - ended up in ER about 3 times and the rest I deal with at home - rest, no food until spasms pass.  I did find that taking Ibuprofen helps, as I think it is also associated to infllammation in that area.  It is frustrating, as most of my CT scans of the abdomen since have not seen this stricture.  You would think that if I have a scarred, narrow area, it would always show in the CT scan.  I have heard that blockages can be hard to confirm with diagnostic tests, but they sure wipe me out.  Also get more minor ones that can make me feel pretty crappy, bedridden, but not as long as the partial ones.  

I find the fulfir chemo that I am on really upsets my system - I have suffered with constipation issues - have taken miralax daily for about 5 yrs now (foods with too much fiber bulk and can cause blockages so not recommended for low residue diet). The chemo and meds aggravate and complicate my side effects - more issues with constipation and diarrhea than others might experience.  Always trying to adjust with miralax, sennakot S, and then immodium if swings the other way.  My Gastro Dr said miralax is the safest for ongoing constipation - does not want me to have laxatives that bulk - have a great dietician, who considers the foods that should not be in my diet, and those that will help prevent blockages in that strictured area - I listed some in my above post.  I hope you can find some relief - if you have a strictured or scarred intestinal area, I do think a low residue diet, because these foods are digested more easily, (although restrictive, and some items not so healthy, and can be more time consuming to prepare) can help to reduce the painful spasms you get with a blockage. For instance, in order to get certain veggies, fruits you may have to juice them, cook until very soft, remove skins, seeds, etc.  Hope this helps a bit.

Strictures

Thank you so much for your generous reply. I am on low residue diet and take Miramax,colace and Benefiber daily. I feel like I have strictures somewhat. Colonoscopy showed nothing,Dr repeating with sigmoidoscopy this week.  I think your right may need something more to see.  Did you mean no fiber supplements? I too have had radiation and chemo.

Helpful

This thread had been so helpful to read. I got my ilestomy reversed last month and it has been incredibly difficult. I know we will never be back to normal but I sure as hell hope we can at least attend events and go to public places without having an axiety attack about where the bathrooms are and how quickly I can get there. Aside from chemo, this has been the most difficult part of my cancer journey.