My dad was just diagnosed with Crohn's Disease

[cence]

Hi,

I joined this forum because I'm trying to help my dad. He is 71 and has been generally healthy all his life, except for the occasional bout with gout and psoriasis on his elbows and knees.

About 6 weeks ago, he started having problems with his digestion. Whenever he would eat, he would get really bad cramps, gas and diarrhea. After about 2 weeks, he made an appointment with his gastroenterologist (he skipped his GP entirely... this doctor had given him a colonoscopy a few years back and he just went straight to him).

He did all the normal tests: stool samples, another colonoscopy, Barium tests. They ruled out any bacterial infections. He was diagnosed with colitis and was prescribed steroids and an anti-inflammatory drug (I'm not sure what specifically).

Well, he had a horrible reaction to the steroids (I think). It causes him difficulty swallowing and it got to the point where he couldn't even swallow water without gagging.

So, my mom took him to the emergency room, but since he had an appointment with his specialist the next day, they did not admit him (they gave him fluids, I guess to treat his dehydration).

At this point, he has lost over 30 pounds because he can't eat.

When he saw his gastroenterologist again, he said to go to the hospital if the swallowing problems didn't alleviate themselves in 3 days. They didn't, so back to the hospital.

They initially tried very simple, soft foods: jello, etc., but he was still experiencing cramps and gas. They did another series of tests, put him on a feeding tube, etc. and finally diagnosed him with Crohn's Disease. He was in the hospital for over a week and experienced a blood clot which left him partially blind in one eye.

He is home now, but is still on a feeding tube. The doctor basically told him if he wants to eat normal food again, he needs to have surgery to remove his colon.

I told him to get a second opinion! I've done research and so far, I don't know if they tried using immunosuppressants (since Crohn's is an autoimmune reaction - much like psoriasis - which may be a result of a particular genetic mutation, right?).

He is very weak and is getting very depressed. I've never seen him this down before. It makes me feel so sad for him.

I'm on here because I want to read other people's experiences with Crohn's Disease. Maybe to get some ideas on how others got their symptoms into remission, and mostly to give me (and him) some hope.

 

[David]

Hi there and welcome! Your dad is lucky to have someone as loving and supportive as you are. And my heart goes out to him as well, I'm sorry to hear he is having such a hard time Various things:

1. You're absolutely right to get a second opinion. Something isn't sitting right with me on this one.
2. What were his blood levels like? I'm sure he had a CBC done, what were the results? Any other blood tests as well?
3. Other than the colonoscopy, what did tests have they done? What was the actual finding of the colonoscopy? What did they find that makes the doctor think his colon needs removed?
4. Where all is your dad's disease active? Just the colon? Ileum as well? Higher up? Has he had an endoscopy to evaluate what is going on in his esophagus and stomach and proximal duodenum?
5. Has he had vitamin levels tested such as vitamin B12, folate, vitamin D? People with Crohn's are commonly deficient in these and proper supplementation can make a big difference.
6. What is the other drug he was put on besides the steroids?

I know I'm throwing a lot at you but this is important information to know or find out. If you need anything explained, I'm happy to.

*hugs*

 

[Trysha]

Hello C
David has given a very good summary
Definitely seek another GI opinion.
Colonoscopy defined my crohns and endoscopy revealed several duodenal ulcers and an esophagitis.Regularly I have all the blood work that David has mentioned.
The ulcers and inflammation caused swallowing difficulty for me but treatment with Nexium gave tremendous relief from all these symptoms.
The colon crohns is currently active and shortly I have to have a CAT scan with contrast, the longer term view being a choice of Remicade or Humira, neither of which fills me with joy!
I am in the same age group as your father.It is possible to feel better.
Hugs and best wishes
Trysha

 

[cence]

I will ask him! I live about an hour and a half away from them (they live in the Baltimore, MD area). I suggested he go to Johns Hopkins since it is so close by. I hope he can answer these questions. I'll ask him when I speak to him today.

I know they've done a lot of tests, but I don't think they are really putting in the effort they should be. The whole thing about surgery really threw up red flags... that, I would think, would be a last resort. It seems like they are more interested in yanking parts out of him than treating the symptoms.

That's why I'm here. He isn't very internet savvy and it wouldn't even occur to him to do his own research into it... he's just listening to the doctor, who only has a limited amount of time to spend on helping him. He's dealing with the issue. 24/7. So I'm going to try to help him by doing the research for him... I have to admit, I am at a disadvantage. I'm not the one directly dealing with the symptoms, so I probably can only do so much... but it's worth a try.

 

[David]

Sometimes surgery isn't the last resort, sometimes it truly does make sense and should be done. But the key is making sure that is the best treatment option at that point in time.

And you're doing great

 

[cence]

What really bothers me is the fact that he's been SO healthy all his life. Healthy blood pressure, healthy cholesterol, healthy weight, no serious illnesses... the worst thing to happen to him is he broke his arm a few years back when he fell off a ladder when cleaning the gutters.

I know this illness means his health will deteriorate even more now... not because of Crohn's Disease, but that's usually what happens - One serious illness at his age usually means other things will start happening (like the blood clot).

My mom has been in poor health for many years, and I always expected him to outlive her. He probably still will, but it won't be the same now.

Forgive me, I'm a daughter who is just starting to face the mortality of her parents.

 

[David]

*hugs*

 

[cence]

I just talked to him:

2. What were his blood levels like? I'm sure he had a CBC done, what were the results? Any other blood tests as well?

His blood tests all came back within normal.

3. Other than the colonoscopy, what did tests have they done? What was the actual finding of the colonoscopy? What did they find that makes the doctor think his colon needs removed?

Barium Swallow, stool cultures, endoscopy. In addition to cat-scans, etc.


4. Where all is your dad's disease active? Just the colon? Ileum as well? Higher up? Has he had an endoscopy to evaluate what is going on in his esophagus and stomach and proximal duodenum?

He said it's in the colon and the lower part of the small intestine.

5. Has he had vitamin levels tested such as vitamin B12, folate, vitamin D? People with Crohn's are commonly deficient in these and proper supplementation can make a big difference.

He gets supplements through the tube feeder.

6. What is the other drug he was put on besides the steroids?

One to stop gagging and one to prevent gas. He didn't want to get up to read the bottles to me. He's taking those orally.

 

[David]

It sounds like the doctor was pretty thorough which is nice. However, the nutrition he's getting through the tube WILL NOT provide enough vitamin B12 and vitamin D to reach proper levels if he's deficient (I'd bet money he's deficient in at least one) and he should have those levels tested.

We'd need to know the actual results of the barium swallow, CT, and colonoscopy to know if colectomy makes sense. But what I'd suggest is getting that second opinion. All the tests are done so why not have another GI take a look at the results to see if he concurs? The next GI very well may and at least then you know your dad is getting the proper treatment. Or they might suggest another treatment option to explore.

 

[DustyKat]

Hi cence and :welcome:

I am so sorry to hear about your Dad...:hug:...what a difficult and heartbreaking time for you and your family.

Normal blood results aren't uncommon and therefore aren't always an accurate measure of disease activity. When you are able I would look further into what is supplemented and if he has indeed had blood levels done. The description of location suggests that your Dad has Ileocolitis and as such he likely has malabsorption and this will in turn affect his absorption of a number of vitamin and minerals including those that David has mentioned. The delivery and amounts of those vitamins and minerals is also important.

At this point in time tube feeds are a very good treatment option as they will rest his bowel and provide him with adequate nutrition. For many they can be as successful at inducing remission as steroids but if surgery has been suggested as his only viable treatment option then they will still be very useful in stabilising his condition and hopefully reverse the weight loss. This will put him in a much better position in which to face surgery as it not only provides physical improvement but buys him time in which to control the inflammation and improve the surgical outcomes.

A second opinion never goes astray particularly when surgery is required. Your Dad falls into the age group when Crohn's has its second peak of diagnosis. He sounds very much like my children, of course they are on opposite ends of the spectrum but the disease has hit hard and aggressively. For my children complications arose very, very quickly which resulted in surgery being their only option too. I fully understand your concern at your Father facing surgery at his age and I know my saying that both of my children had wonderful outcomes from surgery and have been in remission ever since isn't very consoling so perhaps I can give a better comparison although not related to Crohn's Disease. I work and have worked in surgical units where bowel resections are performed as a result of bowel cancer. Many of those patients are your Dad's age and older and although the aetiology is different the surgery is not and the vast majority have no issues with the surgery itself and the post operative recovery.

All this is understandably a huge shock to you and your parents so seek a second opinion, it may not change the outcome but if it doesn't at least the validation that what is being done is indeed the only option can and does lessen the shock. I have been there myself.

Good luck hun. :heart:

Dusty. xxx

 

[cence]

He has another appointment with the GI today.

I found out through some more questioning that they are treating him with Remicade (plus other stuff for gas and inflammation?) which is a common method of treatment for Crohn's Disease.

I keep asking them questions and it's like pulling teeth. :angry-banghead:

Apparently, after an hour (of the supposed 12 hour) tube feeding, he is still experiencing diarrhea.

He still has gagging and difficulty swallowing.... he can hardly even drink water.

My mom is seriously worried about how depressed he has gotten. He won't even sit outside on the deck (something he loves to do).

 

[David]

I'm glad he's on Remicade, there's a good chance he'll start feeling better soon!

Getting answers from your parents is hard or from the doctors?

Any explanation from the doctors as to why he is having difficulty swallowing?

 

[cence]

I'm glad he's on Remicade, there's a good chance he'll start feeling better soon!

Getting answers from your parents is hard or from the doctors?

Any explanation from the doctors as to why he is having difficulty swallowing?

My parents.

I hope they address the problem swallowing with the doctor today. My mom says they are trying different formulas in the tube feeder. I'm assuming those are adjustments to his nutrient and medications to get the best combination.

 

[cence]

Well...

He was too weak to go to the doctor today. The formula they are feeding him in the tube appears to be going right through him.... which I don't understand. It's an IV right? Why would it cause diarrhea?

He has an appointment with the surgeon Wednesday. I think he's starving to death.

:*(

 

[David]

You mentioned he's on a feeding tube. Are you sure that it's IV? There is an IV form of nutrition but there's also a tube fed version where the nutrients do enter some point of the gastrointestinal tract.

I'm sorry he's doing so poorly

If he's too weak to go to the doctor I wonder if she should be in the hospital instead.

 

[cence]

I'm pretty sure it's IV.

They were trying to bypass the entire GI tract.

I know there are several kinds though.

 

[DustyKat]

I would say the tube feeding he is having is via a naso gastric tube??? If so it is a tube that goes through your nose, down your oesophagus and into the stomach. I know he had swallowing issues before this tube was inserted but having it insitu wouldn't be helping. I also don't imagine he is taking the tube out each day???
Also having nutrition via this method can cause loose stools as the diet is completely liquid.

I imagine your parents are having trouble coping with all this so may not know the answers to some of what you are asking. Yes, they may have been told but there is every likelihood that it wasn't retained and they probably didn't ask why much of this was happening either. I would speak with his doctor directly.

Dusty. xxx

 

[DustyKat]

Sorry have just seen your last post. If he is having it via an IV it is called TPN and to be honest I would have thought that, given your parents age, they would not have him at home so soon with a central line in as they do require care and monitoring.

Dusty. xxx

 

[cence]

Sorry have just seen your last post. If he is having it via an IV it is called TPN and to be honest I would have thought that, given your parents age, they would not have him at home so soon with a central line in as they do require care and monitoring.

Dusty. xxx

A nurse comes every other day or so.

 

[cence]

Okay...

He's scheduled for surgery tomorrow. The prognosis doesn't look good. I hope he makes it through.

What is also bothering me is that I got a scathing e-mail from my aunt accusing me of not being there enough. I don't know what else I can do. I have a job, limited leave and live hours away. I call almost every day. I'm doing everything I can to learn about the disease so maybe I can help him. I pray. What do they want me to do? I'm stopped and visited a little yesterday and am going down for the surgery. Why isn't this enough?

 

[cence]

He made it through the surgery okay. The surgeon said he took the entire large intestine out (though I had gone to get dinner right as he came out, so I'm hearing only a second-hand account). He said he has NEVER seen a colon as inflamed before.

Everyone (hospital crew) remarked how they had never seen an acute case like this with a person that was otherwise healthy all their life.

What was also weird is he had a blood transfusion right before he was released from the hospital last time and when they checked his blood before the operation and they found that he was having a reaction to the transfusion (that was the first in his entire life). So he has A- blood, they gave him A- blood for his transfusion (obviously), but the body still created antibodies against it? I've heard of blood type abnormalities in certain ethnicities, but this came as a surprise. The doctor explained it as "super" blood typing... But I can't seem to find anything online explaining this.

Another thing I found perplexing is that they can't give a definitive diagnosis. They can't say whether it's Crohn's Disease or Ulcerative Colitis. They have to look at the damaged tissue under a microscope to be sure. I know they are similar diseases, would the treatment be the same? If thats not the case, shouldn't they have done a biopsy before they took the colon out?

:/

 

[cence]

You mentioned he's on a feeding tube. Are you sure that it's IV? There is an IV form of nutrition but there's also a tube fed version where the nutrients do enter some point of the gastrointestinal tract.

I'm sorry he's doing so poorly

If he's too weak to go to the doctor I wonder if she should be in the hospital instead.

By the way, I found out that he was on a TPN (Total Parenteral Nutrition) feeder, that was the "tube" feeder my mom was referring to... so it was definitely IV.

 

[David]

My apologies for the delayed reply! I took a little personal time away.

I'm so glad your dad made it through surgery ok! I don't think it would have made a difference taking a biopsy prior to the surgery. If it had to come out, it had to come out whether that was due to Crohn's, UC, or otherwise. But now they'll need to find out if it was Crohn's, UC, or something else. HOPEFULLY it was UC as that means with his large intestine removed, he'll be cured.

Oh, and some treatments for Crohn's and UC are the same, others are different.

 

[cence]

I talked to my mom last night. They are starting him with real food again.

He had at least one or two bites of everything they gave him last night... pudding, Italian ice, soup, milk (he actually drank the whole little carton of milk).

He was so happy to eat again too. He was still a little groggy, but he kept on remarking on how good everything tasted.

 

[David]

That's great!