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Hello everyone. I am new to this site. I have suffered from UC since 2000 and am currently battling my 4th reoccurrence of a C. Diff infection.

Went to see a surgeon regarding a Jpouch procedure and he was very negative. He advised me that due to my obesity and subsequent "excessive" abdominal fat...he would possibly not have enough room to do a loop ileostomy. He also said I could wake up with a permanent ileostomy due to inability to fashion a Jpouch.

I just graduated nursing school last Sept. at age 40. Lol it's been a lifelong dream of mine. However, due to C. Diff and UC I haven't been able to hold a job. I cannot leave the house on most days and at times can't make it from my bed to the bathroom without experiencing an "accident". Does anyone have knowledge regarding obesity and Jpouch surgery?  

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Surgery is more difficult (and thus riskier) with obesity. There's huge variation in obesity, though, and the risk with a very high BMI is much greater than for someone at the lower limits of obesity. Surgeons will also vary in their willingness to take (and subject you to) that increased risk. I was certainly in the obese category (but not extreme) when my J-pouch was made, and it went fine.

 

I think the C diff is the larger issue for you now. It has to be cleared up once and for all to enable you to properly judge whether it's time for surgery, and to enable surgery to have a good result. Good luck!

Scott F

I was far from obese and my surgeon (Dr. Irwin Gelernt, who was at the time considered one of the best J Pouch surgeons in the USA) told me he would not cut me until I lost 10 pounds.  It was a flat ultimatum. At the time I was about 172 pounds and I got down to 162 and he then did the surgery.  The abdominal fat tissue makes surgery a lot harder.  If you are more than 10 pounds overweight I would imagine it would make surgery that much harder.  You can't expect the surgeon to wave a magic wand and produce miracles.  You have to give them something to work with.

 

 

CTBarrister
Last edited by CTBarrister

I had some of the same issues when I was facing surgery where the surgeon would not do a J-Pouch due to weight.  The year before surgery my weight fluctuated a great deal, flare up-lose weight, put on prednisone-gain that back plus some.  So I was at my heaviest when it came time for surgery.  My surgeon would not even consider doing the J-Pouch surgery on me being 6'2" 330 lbs.  But I was sick enough where I needed surgery so had the colectomy with an end ileostomy.  As long as they don't remove the rectum at that time it does not have to be a permanent ileostomy.  Getting healthy again allowed me to make changes and I lost 82 pounds over the next 8 months.  So I was still technically classified as "Obese" at the time of surgery. In addition, with me being taller the surgeon still laid out all the risks, such as the pouch not reaching to connect and issues getting the temporary loop but was willing to do it.  I am currently a month out from the reversal and there are good days and bad but the 2 J-Pouch surgeries went well.  My recommendation is that if you really want to have a J-Pouch that you explore doing it in 3 stages.  If you are bad enough off, get the colectomy and end ileostomy now so that you can get healthy then focus on losing the extra weight.  I used it as a strong motivation to get that weight off!  I think doing this allowed for a better chance for the pouch to be successful.

M

I completely agree with MH.  You need to start this process by getting healthy and having your colon taken out and an end ileostomy formed will get you on the road.  I would imagine that this would allow you to leave the house, get a job, and focus on getting your body "in tune".  Living with an ileostomy for a couple of years will require some adjustments on your part but is completely fine.  I worked full time as a nurse in the recovery room while I had my ileostomy.  It did not interfere with any of my life activities.

J

My son was 23 years old, 5'10" and 300 pounds.  He had to have his intesting and rectum removed because of possible Cancer.  The surgeon told him he had to lose 30 lbs.  my son knew he had to have this surgery and his weight was a huge issue.  It scared him so much, he lost the weight.  After surgery because of pain and having the ostomy, he lost another 25 lbs.  they did do the loop and were able to make a pouch, but it was extremely difficult.  Jeff continued to lose weight from all the pain, medication, and surgeries he has now lost over 100 lbs.  not the best way to lose it, but he lost.  (unfortunately, I found some of it.). it is possible to lose the weight.  We went to a weight loss specialist and she put Jeffrey on 1500 calories a day, and no carbs.  He is a picky eater and basically a carb junkie, so it was hard.  But he did it.  Lost the 30 pounds in 3 months.  Give it a shot, you have no idea what is possible when you have to.  i realize this is easy to say and difficult to do.  Oh, my son is also Autistic, ASD, with sensory integration.  So it was very hard for him to accept that he needed to lose weight, but when the doctor told him, he listened.  Good luck to you.  All things are possible!

Jeffsmom
Originally Posted by Jaypea:

I completely agree with MH.  You need to start this process by getting healthy and having your colon taken out and an end ileostomy formed will get you on the road.  I would imagine that this would allow you to leave the house, get a job, and focus on getting your body "in tune".  Living with an ileostomy for a couple of years will require some adjustments on your part but is completely fine.  I worked full time as a nurse in the recovery room while I had my ileostomy.  It did not interfere with any of my life activities.

Thank you for your support! All I want is to go to,work and be able to walk my Aussie everyday and just be "normal". I could swim, walk, and many other things I can't do now because I'm always on the toilet. I am looking forward to not bring so chained!

M

I had a similar experience. My surgeon did the surgery with out an promises o what I would wake up to find. I ended up with a permanent ileostomy. But I am happy to report that after a year of diet and exercise my surgeon was able to give me a J-pouch. The worst part was the three months with the temp Ileo. The spout was short and gave me terrible burns every time I had an output. I ended up loosing another 30 lbs during that three months due to the pain eating would cause! that was 9 years ago, so there is a light at the end of the tunnel. hang in there, you can do it!

Dona

When you say obesity--what do you mean? How high is your BMI? I would get another opinion right away. Many doctors believe that if you lose weight then your health is better and that is not necessarily the case. There is also a tremendous amount of shame induced when a doctor says this to a patient as if we are now responsible for our failing health. I would most certainly seek another opinion from a skilled surgeon. 

K

I will probably get flak for this, but I think some surgeons are more concerned about their own morbidity report rates, than the urgent needs of their patients. A really good surgeon may not have the very best success rates, but is willing to take on the challenges as they present themselves.

 

I was clinically obese at the time of surgery (200+ pounds and 5'5"). I had been on high dose steroids for six months, and basically circling the drain. I was put on his schedule 10 days after my hospital bedside surgical consult. Sure, he would prefer me to be of normal weight and not on high dose prednisone, but he took me as I presented, not as what he wanted.

 

Yep, I had complications. But, I was not going to get better by delaying surgery. I already tried that for six months.

 

Just my two cents. If you have time to lose weight, go for it. Otherwise, get another opinion.

 

Jan

 

Jan Dollar

I've been where you are. I was obese had UC and at times c.diff.  I've battled it with my j-pouch too. First of all you need to get rid of the c.diff. If I ever get again I am pushing for a fecal transplant.  Depending on were you live it might be a problem.  Please PM me or do a search here on the subject and it will come up with several good topics and recent posts.  I have it planned ahead because I suffered from it and cuffitis in my j-pouch at the same time. It was worse than when I had it with UC.  It would clear up a bit and then come back so I was on and off Flagyl for almost a year. Fecal transplants were rare at that time. Cipro gave me my first c.diff infection while I still had my colon so I can't take it ever again. I mention this in case you've been given it.

 

These surgeries were a weight loss plan for me.  I lost around 80 pounds in a year after my surgeries.  I've put some of it back on but am still down 50 lbs. My metabolism is screwed up because of my hypothyroidism disease. I was 90 pounds overweight at 5'8 before the surgeries.  My Internist said I was so sick that no doctor would touch me for a gastric surgery.

 

My GI, C/R surgeon and she said nothing to me about loosing weight before my surgeries.  My surgeon did his fellowship, or whatever they call the training, at the Cleveland Clinic.  He is a overweight himself and a jolly upbeat man . I asked him if my weight was going to be a problem and he said no.  I was the UCer that gained and kept all the prednsone weight.  I think there are 2 general types of UC people.  The ones that get grossly underweight and the ones that get fat. It is hard to loose prednisone or any other weight when you are so ill!

 

My surgery went well but I was hospitalized for 16 days afterwards.  I had big time dehydration problems.  He wouldn't let me go home until everything was under control.  Talk about PTSD events. I was entertained by the helicopter paramedics several nights when none of the nurses  could get an IV started. Hard to do when the patient is dehydrated.  Thank God my take down was 8 weeks after the first surgery.

 

I suggest you find another surgeon. My GI didn't refer me to one of my surgeons partners because she was the type of surgeon that preached about being fit. She covered for the group's patients one weekend and she had no bedside manner.

 

I feel bad for all that you are going through. It's hard to be so ill.  Things will get better. It might take a while but you will get better.

TE Marie
Last edited by TE Marie

I have had a fecal transplant. It didnt work or was ineffective due to the damage and inflammation of my colon. My GI even placed some in my small intestine for good measure and he said it all "followed him right back out". He also said my colon was so inflammed that it had shortened. 

I was thinking...if I have to face something so difficult I wasn't a surgeon with a "can do" attitude. It is hard enough to deal with UC and C. Diff without extra negativity.

 This is my 4th time with C. Diff in 1 1/2 years. Each time the vanc becomes more and more ineffective. 

Thank you for your input. 

M

I guess it all depends on how risk averse you are that determines your viewpoint on the issue.  All these factors do increase the risks of the surgeries. So it is personal preference on if you prefer a more conservative approach or those that are more aggressive in their assessment.  Based on personal experience I was extremely risk averse because of my mother passing away 2 days after a surgery where the surgeon was really aggressive in his treatment.  So I probably would have done anything my surgeon wanted to have the highest chance of success. 

M

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