Short bowel,onto tpn next,last hope.

[ANYA SMYTHE]

I am writing for my bother's plight with Crohn's which has ruled his life basically since he was in his late teens...he's 43 now th God...he hasn't had a formed stool since forever it seems...his last hope seems to be TPN ..anyone else ever have to use this to get their body back on track so to speak..he's lost alot more weight recently,has no stamina,low grade fevers,fatigue and joint pain..it doesn't DEFINE him though..he won't let it...SEEMS LIKE THERE ARE NO DOCTORS OUT THERE ABLE TO HELP HIM get even a little better?...he's been TO BOSTON TO NO AVAIL...seen many GI DOCS..has had B12 shots..has had REMICADE IV's...TRIED MOST EVERYTHING and nothing seems to help...sorry to sound so frustrated and I'm not the one with Crohn's th God...I do have my issues with IBS though so I'm sure it's all genetic to some degree..help..anyone? ty for listening everyone and Good luck to all of you.

 

[David]

Hi Anya and welcome to the community I'm so sorry to hear of your poor brother's plight. That's terrible

First off, yes, many here have utilized TPN. We have a subforum dedicated to it and enteral nutrition in fact. It can be a wonderful treatment option

If you're interested in sharing some information regarding your brother, maybe some people here might have some ideas. There's a wealth of knowledge and unfortunately way too much experience here. Questions:

1. What medications is your brother on now?
2. What are his specific symptoms? Not just intestinal, but extraintestinal as well.
3. Has he had any surgeries?
4. Has he made any dietary changes/exclusions?
5. Where is his Crohn's Disease located? For example, small intestines, large intestine, both? If you can provide more specific information on location, that's great too.
6. What does your brother's test results look like?
7. How often does your brother get B12 injections and what was his B12 level the last time he was tested?
8. What other vitamin and mineral deficiencies have they tested for? For example, vitamin D, magnesium, folate, potassium, zinc, etc.
9. Is he open to alternative treatments or clinical trials?

Let's start there as I realize that wall of questions may already be somewhat overwhelming. Thank you for being such a great sibling and reaching out, your brother is very lucky.

*hugs*

 

[ANYA SMYTHE]

TY..i WILL FIND OUT THESE ANSWERS AND GET BACK TO YOU...

 

[ANYA SMYTHE]

HELLO DAVID..I found out some answers to the questions you asked me...the only med he's on is for Crohn's called "Cimzia"sp?.......his symptoms are complete exhaustion,joint pain,low grade fever and malnourished....he has had 4 surgeries...one in 1991 ,his first...they didnt remove any necrotic tissue,they did what's called a "by-pass" ...and one surgery was to put in a bag and the last was to remove the bag...there was a second on whereby they found softball sized abcesses and the part he has CROHN'S IN IS THE ILEOCECUM VALVE BETWEEN LARGE AND SMALL INTESTINE...he's always low on Vit D and B12...he gets B12 BY NASAL SPRAY every so often....as for foods he excludes etc.,...ANYTHING he eats bothers him...comes right back out...he's had the TPN before but was able to eat food with it...THIS TIME THEY DONT WANT HIM to eat any food..JUST USE TPN...the poor guy...noone can help him...he's thin as a rail...he will start the TPN in about a month or so...I think he needs it sooner but he wants to wait til he's back home from a trip with his wife and children to Pennsylvania to visit her father...he is on light duty with his full time job and is a strong,proud man...he should prob. be on disability,he meets the requirements but he's a former MARINE ...need I go on?..ty for your time..any input would be greatly appreciated.

 

[ANYA SMYTHE]

he's heard you can get KIDNEY FAILURE with prolonged TPN therapy...is that true? he's thought about intestinal transplant or stretching??,,...he's desperate.

 

[Lisa]

Hi Anya - and sorry to hear about your brothers' plight.....with his surgeries, did they take out the ilieocecal valve if it was affected?.....if he is doing so poorly right now, why the wait to start TPN?.....and is he willing/able to join the forum to get some support?.....

I see you are in Albany - is that where he is based out of too?

 

[David]

The bypass surgery. What was bypassed specifically?

It sounds like TPN is certainly a good idea for him to try.

There is such a thing as a bowel transplant, give this a read: http://www.crohnsforum.com/showthread.php?t=30541

I also suggest researching stem cell therapy. Read this: http://www.crohnsforum.com/showthread.php?t=22259

*hugs*

 

[ANYA SMYTHE]

HELLO Pasobuff...ty for your reply....my brother is pretty discouraged,almost depressed really since noone has been able to help him...he's tried REMICADE too and that didn't help either...he probably doesn't want me to say where he lives if that's alright...as for the ileo-cecal valve...don't think they removed it...they did two "bypasses" during two of his 4 surgeries though...sorry if that's too vague?..he wants to wait til he gets back from vacation to his fatherinlaws in pennsylvania to start the TPN...

 

[ANYA SMYTHE]

MY BROTHER texted me just now after i asked him..HE HASN'T HAD THE ILEO-CECAL VALVE FOR 23 YEARS NOW...HAD ALLERGIC RXN. TO REMICADE...AND THE SHORT BOWEL IS THE MAIN PROBLEM..NOT THE CROHN'S HE SAYS...GOD HELP HIM.

 

[DustyKat]

Hi Anya,

I'm so sorry to hear about your brother...:hug:...it must be so heartbreaking for you to see him suffering so.

As David has just asked, can you find out from him how much bowel he has removed and from where?

He may well have bile salt diarrhoea as the removal of his ileocaecal valve, the presence of an abscess and his need for B12 would fit the area of bowel where this occurs.

Also has he ever taken a medication called Questran, it is a powder, or has it been discussed with him?

Dusty. xxx

 

[ANYA SMYTHE]

TY also DustyKat ...and David again...appreciate your prompt replies and input from all of you...it's comforting...he says he hasnt had any removals,just bypasses??...i will look into this more though...never heard of that Bile-Salt diahrrea...hmm...and that drug you mentioned I will ask him....it's some disease,that's for sure...pretty relentless for my brother and many other folks too sadly...will get back to you soon God willing..ty again

 

[David]

Yes, please find out what he means by bypasses.

 

[TheyCallMeRC]

Hi Anya. I was actually on tpn for close to a year back in 2009 when the illeostomy I received after a small bowel resection did not take well with my body.

In regards to tpn causing renal failure, I was actually in renal failure 4 times because my body wasn't absorbing anything I put in my mouth and the tpn was the way to go.

I am not a doctor and just because I was on tpn doesn't make me an expert, but it would just seem that since the nutrition is going into the bloodstream and absorbing then it would mean less chance for renal failure.

I was also given saline a few times a day along with the tpn.