Just checking in, 8 months post op bowel obstruction, 15 yr. post DS

[barrelracinbroke]

Hi all, hope everyone is doing well. I just wanted to check back in since I hadn't been on here in a while. Some of you may remember me. I had a DS back in 2000 at the age of 28 with Dr. Anthone when he was at USC. In 2002 I had a revision, as I had become too thin and couldn't quit losing weight. I had had zero issues since the revision. Maintained my weight well and lived life to the fullest. Could've definitely taken better care of myself with vitamins and such but, youth was on my side and I had no immediate health concerns.

Fast forward to spring of this year, I started feeling very ill and had excessive stomach pain. I lost a ton of weight and was over ridden with anxiety because of all of it. Luckily, thanks to the wonderful people on this site, I was able to find Dr. Keshishian. He immediately sent me for testing and it turns out I had an intussusception that would intermittently correct itself. Because of this, I had an exorbitant amount of bacteria that had built up in my system. He put me on Flagyl and within 2 weeks (or less?) I was having surgery to correct the underlying cause.

I am now 8 months post op and doing very well! I have changed a lot of things and take much better care of myself. Although my lackluster approach to health wasn't what caused my issue, it was a wake up call. I now take my vitamins and calcium supplements religiously and have stopped drinking coke (I used to drink 4-6 a day so, that was huge for me). The soda was not what caused the issue but, I also previously had osteoporosis from having hyperparathyroidism so, it definitely wasn't helping my bones.

In addition to seeing Dr. K for my DS health, I now see a female health and wellness doctor. She has been great in helping me get back on track and take care of myself as well.

Anyhow, again, a HUGE THANK YOU to the people on this site. You all were a blessing to me and I can't thank you enough.

 

[DSRIGGS]

Glad to hear you are doing well. I had a revision with Dr K in August due to malnutrition. I haven't really gained any weight but I was on 400K IU of Creon daily and that stopped immediately. I am at the bottom of range for Total Protein and Albumin now and it dropped a bit from my last read.

My issue is having constant bloating and gut problems, then what I call a clean out day every few days where I drop 5-8 pounds. That leaves me feeling like garbage. I have had a CT Enterography that showed fecalization of the small bowel at and distal to the anastomosis (CC). A small bowel follow through was ordered and the fecalization wasn't there (but I did a flush so does that really mean anything?) and it did see some irregularity with mucosal folds but according to Dr K whom I had the imaging sent (I live in IL) he didn't seen anything jumping out at him. During my revision Dr K repaired an intestinal hernia that was fixed a year earlier. I am feeling that same way now. He postulates that it could be an adhesion but is fearful that I could be getting into a cycle of repair, adhesion, repair, adhesion...so he is wanting me to try a few things first before we go that route. I have eliminated/cut back on foods for a few days and I see no major difference from anything. Too many carbs gives me some gas but eliminating them doesn't make the gut pain go away. Too much fat causes slicks and some pain, but I try really hard to watch excess fat. Dairy doesn't really cause any issuse that I have noticed. Nothing I have tried with diet has helped so in my mind it isn't diet but an adhesion and or hernia that is intermittent in causing a partial blockage. .....so I see more surgery in my future. BTW, I have done major courses of antibiotics including a heavy hit IV in hospital, flagyl, clyndo and one or two others and it really hasn't helped. Hopefully if I eventually have to have another surgery this one will give me 15 years like you have had and then more good years after your recent blip.

Sorry I don't want to hijack your thread but your story is similar to mine other than your revision immediately worked, so I wanted to share.

Congratulations on doing so well and best of luck to you in the future.

* Dr K actually referenced
Gary Anthone when we were chatting. Said his theory is that channel lengths don't really matter as long as the CC + AL = BPL.

 

[southernlady]

Thank you for the kind words and the update, @barrelracinbroke Glad to see your revision helped you. Keep coming back, your experience is important for others to hear.

 

[DSRIGGS]

Ditto to Liz's comment... So much great experience for all to learn from

 

[Larra]

So glad you are doing well now! It sounds like you have put together a great approach to taking care of yourself as well. Great jjob!

 

[Elizabeth N.]

YAY So glad to hear you're better! Still barrel racing

 

[barrelracinbroke]

Thanks so much everyone.

YAY So glad to hear you're better! Still barrel racing

Thanks so much! And yes I am still barrel racing! It's the reason I did this
Hope you're doing well.

 

[barrelracinbroke]

I

So glad you are doing well now! It sounds like you have put together a great approach to taking care of yourself as well. Great jjob!

Thank you Larra! I really appreciate you reaching out as you did when this whole thing stated. So thankful

 

[barrelracinbroke]

Glad to hear you are doing well. I had a revision with Dr K in August due to malnutrition. I haven't really gained any weight but I was on 400K IU of Creon daily and that stopped immediately. I am at the bottom of range for Total Protein and Albumin now and it dropped a bit from my last read.

My issue is having constant bloating and gut problems, then what I call a clean out day every few days where I drop 5-8 pounds. That leaves me feeling like garbage. I have had a CT Enterography that showed fecalization of the small bowel at and distal to the anastomosis (CC). A small bowel follow through was ordered and the fecalization wasn't there (but I did a flush so does that really mean anything?) and it did see some irregularity with mucosal folds but according to Dr K whom I had the imaging sent (I live in IL) he didn't seen anything jumping out at him. During my revision Dr K repaired an intestinal hernia that was fixed a year earlier. I am feeling that same way now. He postulates that it could be an adhesion but is fearful that I could be getting into a cycle of repair, adhesion, repair, adhesion...so he is wanting me to try a few things first before we go that route. I have eliminated/cut back on foods for a few days and I see no major difference from anything. Too many carbs gives me some gas but eliminating them doesn't make the gut pain go away. Too much fat causes slicks and some pain, but I try really hard to watch excess fat. Dairy doesn't really cause any issuse that I have noticed. Nothing I have tried with diet has helped so in my mind it isn't diet but an adhesion and or hernia that is intermittent in causing a partial blockage. .....so I see more surgery in my future. BTW, I have done major courses of antibiotics including a heavy hit IV in hospital, flagyl, clyndo and one or two others and it really hasn't helped. Hopefully if I eventually have to have another surgery this one will give me 15 years like you have had and then more good years after your recent blip.

Sorry I don't want to hijack your thread but your story is similar to mine other than your revision immediately worked, so I wanted to share.

Congratulations on doing so well and best of luck to you in the future.

* Dr K actually referenced
Gary Anthone when we were chatting. Said his theory is that channel lengths don't really matter as long as the CC + AL = BPL.

I am so glad that you're under the care of Dr. K! As far as the revision, I can tell you that mine did take some time to "re-adjust". Please bear with me on my explanations because I am not particularly well versed on the medical terms as a lot of you are. I think my common channel originally was 75cm and, one of the things Dr. K said about me following the CT scan was "you have hardly any bypassed bowel" and then asked me "how many bowel movements do you have a day?" So, I let him know it was usually 1, or sometimes I'll even skip a day. So, I know my revision was quite "aggressive" in getting my weight back up. I know that for me, with both the revision and this last surgery, the experiences were similar in terms of weight gain (as you know I needed to gain some weight back again after this episode too). With both, I lost additional weight during the surgery and hospital stay (to be expected).

For this past surgery, after coming home with the diet restrictions and healing, I lost a little more but not a ton. Then, my weight leveled out for quite a long time. At about 3 months, I had gained 5lbs and at 6 months 10lbs (keep in mind I'm only 5'1 so 10lbs was definitely noticeable). I was really surprised I hadn't gained more weight because I was eating a lot of calories and hadn't started riding horses as much as I was or, doing as much physical work as I used to. I honestly thought "wow, this is great! I am eating a lot and not gaining weight! Maybe I'll stay this weight forever!" Then, boom! About 60 days ago (6 months post op), I started to gain rather quickly. I've gained 5lbs a month for past 2 months so now I'm 20lbs more than I was when I went in. I haven't changed anything in the past couple months so, my body just started to absorb more after that time. Now, I'm actually gonna try and lose 5-10lbs. LOL!!

With the original revision, although I can't remember timelines exactly, I can tell you that the process I recall is very similar in terms of weight gain. It took quite a while for that. My body levels out, then after some months starts to realize "oh, we can gain weight again, so lets!". Then, I'm back to being a little over weight and trying not to gain a ton. The specific details that I can still remember are that I had a lot less bowel movements once I had the revision (formerly had 2-4 a day or more depending on what I ate), I don't ever have "oil slicks" for bowel movements any more, I never have what my husband calls "e-poo" type of situations anymore (where you're getting off the freeway NOW to find a bathroom LOL), I am able to eat with a little more free range without excessive gas and bloating and I no longer suffer from kidney stones as I used to.

So, I'm really hoping and praying for you that you're on your way to getting back to where you need to be nutritionally and that this revision is going to be exactly what's needed to do so. Like I said, for me, it has taken my body time to re-adjust but, it has. And I certainly hope yours does too. And soon!

 

[barrelracinbroke]

Thank you for the kind words and the update, @barrelracinbroke Glad to see your revision helped you. Keep coming back, your experience is important for others to hear.

I will! I don't know what I would've done or if I would've been ok without this site.
So thankful!!

 

[DSRIGGS]

I am so glad that you're under the care of Dr. K! As far as the revision, I can tell you that mine did take some time to "re-adjust". Please bear with me on my explanations because I am not particularly well versed on the medical terms as a lot of you are. I think my common channel originally was 75cm and, one of the things Dr. K said about me following the CT scan was "you have hardly any bypassed bowel" and then asked me "how many bowel movements do you have a day?" So, I let him know it was usually 1, or sometimes I'll even skip a day. So, I know my revision was quite "aggressive" in getting my weight back up. I know that for me, with both the revision and this last surgery, the experiences were similar in terms of weight gain (as you know I needed to gain some weight back again after this episode too). With both, I lost additional weight during the surgery and hospital stay (to be expected).

For this past surgery, after coming home with the diet restrictions and healing, I lost a little more but not a ton. Then, my weight leveled out for quite a long time. At about 3 months, I had gained 5lbs and at 6 months 10lbs (keep in mind I'm only 5'1 so 10lbs was definitely noticeable). I was really surprised I hadn't gained more weight because I was eating a lot of calories and hadn't started riding horses as much as I was or, doing as much physical work as I used to. I honestly thought "wow, this is great! I am eating a lot and not gaining weight! Maybe I'll stay this weight forever!" Then, boom! About 60 days ago (6 months post op), I started to gain rather quickly. I've gained 5lbs a month for past 2 months so now I'm 20lbs more than I was when I went in. I haven't changed anything in the past couple months so, my body just started to absorb more after that time. Now, I'm actually gonna try and lose 5-10lbs. LOL!!

With the original revision, although I can't remember timelines exactly, I can tell you that the process I recall is very similar in terms of weight gain. It took quite a while for that. My body levels out, then after some months starts to realize "oh, we can gain weight again, so lets!". Then, I'm back to being a little over weight and trying not to gain a ton. The specific details that I can still remember are that I had a lot less bowel movements once I had the revision (formerly had 2-4 a day or more depending on what I ate), I don't ever have "oil slicks" for bowel movements any more, I never have what my husband calls "e-poo" type of situations anymore (where you're getting off the freeway NOW to find a bathroom LOL), I am able to eat with a little more free range without excessive gas and bloating and I no longer suffer from kidney stones as I used to.

So, I'm really hoping and praying for you that you're on your way to getting back to where you need to be nutritionally and that this revision is going to be exactly what's needed to do so. Like I said, for me, it has taken my body time to re-adjust but, it has. And I certainly hope yours does too. And soon!

Thanks Hon. I am glad you are doing well and your story gives me some hope that my system might adjust over time. It is just frustrating because even though I didn't gain any weight at first (didn't expect and expected a good 6 months to get to goal) my lab values were good without any CREON (and I was on a metric shit ton). Then since mid October the numbers started to go the other way. I am eating no differently now then I was after the revision (8/18/15).

Hopefully my absorption kicks in much like yours has and I can get to feeling good. I honestly don't care what my weight is if I feel good. I would be happy at my current 170-175 or at 220 pounds.

Merry Christmas!