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Crohn's Disease Forum » Your Story » Starving to death


11-20-2015, 11:00 AM   #1
needhelpformydad
 
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Starving to death

My dad has been withering away for the last 10+ years and every time he goes to the doctor there never seems to be anything that really helps. He's done acupuncture, different suggested diets, different eating schedules, etc. Everything that I can think of. He had a big scare a little while ago because he ate too much and his inflammation kicked in and he could not use the bathroom. He's a bit stubborn and by the time my mom finally got him to the hospital for this, his heart started to fail and he was immediately admitted to ICU to monitor his heart and get nutrients in him.

He recently has been having to go to the hospital on a more routine basis to have an IV for nutrients since the big scare. The last time he went to Stanford hospital their tests showed that even with the IV that he was not absorbing the nutrients being injected. This worried the hospital a lot and they are currently trying to get a room situated where he can be in the hospital for a whole week to get him leveled out a bit. The doctors said that his situation is basically that his body not absorbing the nutrients means that he essentially starving to death. He is down to 110 lbs. He was in his best shape years ago at 170 lbs. He basically looks exactly like a picture of a starving kid in Africa with a bloated stomach from the inflammation and scarring (from countless operations) and 0 meat on any bones.

The doctors are also going to put in a pick line for constant nutrient injections. they were going to do this after his scare with his heart, but decided not to because he got a bit better and they felt the risk of infection in the area of the pick line was a greater risk. They have now changed their opinion on the risk of infection and he is supposed to get one within the next week. Everyone that I see with Crohn's looks like they are in 100% better shape and i cannot tell that anything is wrong with them on the outside. i do not understand how this disease is literally killing him and others seem to have it "under control."

I cannot find anything on a list of top doctors nationally for Crohn's. I have read a few reviews about certain hospitals and it looks like the closest with a good clinic is the Mayo Clinic. Does anyone know where I can find a list of top doctors for Crohn's? My dad just switched to a different doctor within Stanford, but he has been there the last 30 years and he never seems to get better. they sustain him and then over time it keeps getting worse and worse.
11-20-2015, 12:53 PM   #2
ronroush7
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You might try contacting Crohns and Colitis Foundation of America. Their number is 1-800-932-2423. Prayers and support for your father.
11-20-2015, 02:21 PM   #3
needhelpformydad
 
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Thank you! I will give them a call.
11-20-2015, 04:10 PM   #4
Lisa
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First, sorry your dad is doing poorly. Second, has he been on medications over the years? I don't see any mentioned in your post - just the acupuncture, diets etc....if the active disease is not controlled, it is very hard/impossible for the body to absorb the nutrients it needs to sustain someone.

What I would do is request a comprehensive list of medications he is on for you to look over, and also blood test results. If you are comfortable sharing that information here, here may be some of us who have had experience with bloodwork levels/reading to help decipher the results, as well as give input on any medications that may have not been tried.

Lisa
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
11-20-2015, 04:35 PM   #5
needhelpformydad
 
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I do not know the specific drugs he has been prescribed. But I know B2, potassium, magnesium, and medical marijuana. Those are the ones I know about. I would have to get the full list from him. It is really hard on the family as well because he does not always relay when he is in pain before it is literally too late. I will try and see if I can get more specifics. I really appreciate the feedback.
11-20-2015, 04:52 PM   #6
needhelpformydad
 
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So my dad is on Humira and prednisone at the moment. the short bowel from operations over the years is enhancing the malabsorption at a rapid pace right now.
11-20-2015, 04:54 PM   #7
Susan2
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What diagnosis has your dad been given? Has he actually been diagnosed with Crohn's or Colitis? What you mentioned in your previous post are not actually drugs.
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Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
11-20-2015, 05:35 PM   #8
needhelpformydad
 
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I have posted as much information as I know he has taken with Humira and Prednisone. The others being vitamins he injects. He is diagnosed with Crohns.
11-20-2015, 05:47 PM   #9
Clash
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So his malabsorption may be due to short bowel syndrome from past resection he needed. Is his CD active now, meaning his his disease flaring that has been present in blood work, fecal calprotectin stool test, imaging or scopes? If the Humira and pred has the disease under control then the absorption issues could be due entirely to SBS and tpn (picc line) is often a route that is taken to ensure proper nutrition is being maintained.

It can be so hard to watch a loved one struggle. I know you must be very concerned.

Some questions for the GI would be.

Is malabsorption due to active CD, short bowel syndrome or both?

If it is active CD, is there the possibility of shortening the humira schedule or upping the number of shots. Or could it be possible to add an immune modulator to help get the active CD under control.

If it is short bowel syndrome have the docs give a full explanation of what is occurring and what other options will be available. You may want to include asking about known IBD clinics that often deal with SBS.

In my post you can click on the highlighted words to get a short detailed definition or explanation of the word and other details that pertain to the illness, treatment etc.
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Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-20-2015, 06:19 PM   #10
needhelpformydad
 
Join Date: Nov 2015
So his malabsorption may be due to short bowel syndrome from past resection he needed. Is his CD active now, meaning his his disease flaring that has been present in blood work, fecal calprotectin stool test, imaging or scopes? If the Humira and pred has the disease under control then the absorption issues could be due entirely to SBS and tpn (picc line) is often a route that is taken to ensure proper nutrition is being maintained.

It can be so hard to watch a loved one struggle. I know you must be very concerned.

Some questions for the GI would be.

Is malabsorption due to active CD, short bowel syndrome or both?

If it is active CD, is there the possibility of shortening the humira schedule or upping the number of shots. Or could it be possible to add an immune modulator to help get the active CD under control.

If it is short bowel syndrome have the docs give a full explanation of what is occurring and what other options will be available. You may want to include asking about known IBD clinics that often deal with SBS.

In my post you can click on the highlighted words to get a short detailed definition or explanation of the word and other details that pertain to the illness, treatment etc.

Thank you.

what I know is that this is both SDS and active CD.

the picc line is going to be put in Monday. He is going to be in the hospital for a week to monitor him during the beginning stages.

I really worry about infection because he is down to nothing and reminds me of a cancer patient going through treatment. i do not believe that his body can fight any infection. So the one thing that can possibly get him better at this point is also what can kill him.

I will ask about the immune modulator, but it sounds like my mother has gone over that with the doctor already as well.

Everything seems like a guessing game medically. The one thing that seems like can really change things quickly is stress level. There are a lot of things that need to change in his life to reduce the amount of stress.
11-20-2015, 07:15 PM   #11
Clash
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A picc line can be scary but hopefully it will provide the nutrition he needs without any issues with infection.

If stress is a trigger it might help for him to talk with someone on a regular basis. I know therapy isn't for everybody but there are some great ones out there that specialize in chronic illness.

I hope things quickly improve with the picc line. Hugs.
11-21-2015, 01:52 PM   #12
Robrich
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How old is your Dad?
Has he tried an elemental diet?
It is pre digested nutrition that goes directly from the stomach to the blood and doesn't need the intestines to digest it. There are several formulas available.
Can probably use in addition to the feeding line. Maybe after he is stabilized.
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DX. Crohns 50 yrs. with fistulas for 20 years until remicade
Meds: MTX,ENTYVIO 9/14' augmentin,
pred. 10mg.
probiotics
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Turmeric,paleo, bone broths
Past: humira no response after 6 mos., remicade amazing for 10 years then stopped working.
Entocort
6mp, Imuran never helped nasty side effects liver problems, caught pneumonia
Asacol, rowasa no response
Flagyl worked well but got PN cipro same.
11-23-2015, 12:33 PM   #13
needhelpformydad
 
Join Date: Nov 2015
How old is your Dad?
Has he tried an elemental diet?
It is pre digested nutrition that goes directly from the stomach to the blood and doesn't need the intestines to digest it. There are several formulas available.
Can probably use in addition to the feeding line. Maybe after he is stabilized.
He has tried so many different diets that I cannot keep up. I have suggested it to my mom to check with the doctor.

I am learning more from this forum that I have even been told from my Dad. He tends to keep things to himself when it comes to his problems, so it's nice for me to at least have some information on what others have experienced.

He goes into today for more blood work. More than likely, he will have to spend the week in the hospital monitoring his heart, absorption effectiveness, and any infection possibility.

He is trying to be as "normal" as possible without alarming anyone in the family. I am scared because I have never seen him wither away like this My mom tried to tell me in 1990 (when I was 4) this same thing happened, but my uncle said that was not true and he was not this bad back then. So I do not know exactly what to believe other than my eyes at this point.
11-23-2015, 01:30 PM   #14
ronroush7
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Sending suppose.

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