Crohn's-marriage

[guideme]

I am 32 year old male. I have been diagnosed with Crohn's in Jan 14 as moderate. I did not take any medication. In sep 15 i have been diagnosed as Crohn's with mild activity.
I have been suffering from anal fistula from 2010. But could not convey anyone. However i have consulted the doctor and got surgery in this dec thirdweek. After 2 weeks , medication for Crohn's will be started with remicade.

I am looking for peoples real experiences on the following to take some life decisions i.e. to get married or not, to get kids or not etc

1. Will this Crohn's become cancer at some point of life?
2. What would be the life expectancy of Crohn's patient-This decides my marriage decision
3. What health complications would i face in future with this disease?
4. Will i gain weight after taking remicade and how long it takes to put on weight?
5. Will anal fistulas reoccur again after surgery?
6. I heard many surgeries will be required in life i.e. surgery for removing part of small intestine? Does this happen. What are all the possible surgeries required in future.
7. If i marry, will it ruin the girl's life?
8. Will i get kids or not?
9. If i get kids will they get affected with this disease?
10. Does it come to my wife through sexual intercource?
11. does the health complication reoccur again and again?
12. Will it lead to mortality?
13. my sexual performance has come down drastically..is it due to this disease?
14. In the ileum, contact mucosal bleeding is found. Is it dangerous?

The list is big. But so many thoughts are going on in my mind. I would be very greatful if friend here could share their real experiences. No matter howmuch scary the real situation is. Pls do share.

 

[tzvia]

I will answer your questions one at a time. Overall, i want you to know that you can go ahead and try to have a regular life with marriage and children if you want! Crohn's doesn't mean that you can't have love, family, marriage, children. Lots of people with Crohn's do.

1. Having Crohn's does not mean you will get cancer. However, I think I've heard that people with Crohn's have a higher rate of colon cancer. But this doesn't mean you will get it. And some of the drugs that help Crohn's can cause higher rates of cancer but the percentage is very small. My grandmother had Crohn's for 60 years and died of natural causes at 82, and never got cancer.

2. The life expentancy is similar to the rest of the population. As stated above, my grandmom had Crohns's and lived to 82. Some people do have complications from Crohns that affect the length of their life, but the percentage of it happening is very very small.

3. Possible health complications with Crohns: I will list some here off the top of my head, but its doesn't mean you will get them! Some people do get some of these, some don't. (And this is not scientific because it's just off the top of my head) Diarrhea, constipation, abdominal pain, risk for malnutrition, risk for dehydration, risk for bowel obstruction, might need possible surgery in the future, fistula, side effects from drugs, fatigue, anemia.

4. If you have lost weight due to Crohn's, chances are that once you find a medicine that works, you will gain weight. At my worst I was 89 pounds, but now i am a healthy 120. (5 feet tall female) With Crohn's weight tend to go up and down, but the weight change does not need to be specifically drastic, although in some cases it is. I tend to bounce up and down between 110-120.

5. Anal fistulas may reoccur after surgery or they may not. It all depends on your particular body.

6. It's common for people with Crohn's to have surgery, but not everyone has surgery. Of those that do get surgery, some of them just need that one surgery, but other people will require multiple surgeries. Crohn's is not the same for everybody. Some people have a very mild case and some more severe. Some people respond to certain medications, and some do not. It's a matter of trying different things (diets, medicince, possible surgery) to see what works for you. My grandmother never had to have surgery for her Crohns, but I did have one surgery where they removed a small portion of my intestine. Now I'm doing pretty well, for the mot part.

7. NO!!!! If you marry, you'll marry a woman who loves you during "sickness and health" Crohn's is not a fun disease, but it can be managed. There may be times that you will be in pain, or be tired, or cranky, or have to poop alot. But that's not going to ruin someone's life. Nobody is perfect!

8. Crohn's should not affect your fertility. You should be able to have kids.

9. There is some evidence that Crohn's is passed genetically, so your children would be at a higher risk for getting Crohn's, but they are not guaranteed to get it.

10. You cannot give Crohn's to someone through sex.

11. Crohn's is chronic disease, which means that people tend to have complications that pop up over and over during a lifetime. But as stated before, the disease is different for everyone. Some people have very few complications and some people have more. The key is knowing how recognize and treat complications as they come up.

12. Everyone will die someday, whether they have Crohn's or not. But Crohn's does not affect life expectancy. There are ways to die from Crohn's but they happen in very very extreme cases, only a small percentage of the time. A typical person with Crohns can be expected to live as long as everyone else, I think.

13. When you aren't feeling good, sexual interest/performance may decrease. Who wants to have sex when they feel like poo? But once you are feeling better, things should go back to normal .

14. GI bleeding can be dangerous, but if you are being monitored by a doctor that is good. Lots of us have ulcers in the intestine that may be irritated or bleeding. Your doctor should put you on a medicine that should reduce the inflammation and allow the sores to heal and the bleeding to stop. A warning sign of a bad GI bleed is black, tar-like poop. If you ever have poop like that, you should call your Dr right away, or go to the Emergency Room. Seeing red blood in the toilet also warrants a call to the Dr or the ER.


i hope I have been helpful in answering some questions. This is great community here. Feel free to ask as much as you want and update us on how you are doing.

 

[Deadstar]

I agree with tzvia. All the answers are spot on!

 

[ronroush7]

I haven't experienced all surgeries but five years ago I had a resection. I have also had a couple of abscesses drained. I have had to have fistulas or fissures operated on. Different things can happen to require surgery. I developed a rare side effect as a tresult of taking Remicade. I developed a lesion and had to have it removed surgically. Ihave a wife and a son even though I have Crohns. My wife has been very supportive. I hope this has helped.

 

[Justanothercp]

Guide me,
My point of view is there are no guarantees. Your wife could get cancer and die, you could get hit by a truck....
Live, love try to find the right person and joy; and hope for the best everyday.

 

[guideme]

I will answer your questions one at a time. Overall, i want you to know that you can go ahead and try to have a regular life with marriage and children if you want! Crohn's doesn't mean that you can't have love, family, marriage, children. Lots of people with Crohn's do.

1. Having Crohn's does not mean you will get cancer. However, I think I've heard that people with Crohn's have a higher rate of colon cancer. But this doesn't mean you will get it. And some of the drugs that help Crohn's can cause higher rates of cancer but the percentage is very small. My grandmother had Crohn's for 60 years and died of natural causes at 82, and never got cancer.

2. The life expentancy is similar to the rest of the population. As stated above, my grandmom had Crohns's and lived to 82. Some people do have complications from Crohns that affect the length of their life, but the percentage of it happening is very very small.

3. Possible health complications with Crohns: I will list some here off the top of my head, but its doesn't mean you will get them! Some people do get some of these, some don't. (And this is not scientific because it's just off the top of my head) Diarrhea, constipation, abdominal pain, risk for malnutrition, risk for dehydration, risk for bowel obstruction, might need possible surgery in the future, fistula, side effects from drugs, fatigue, anemia.

4. If you have lost weight due to Crohn's, chances are that once you find a medicine that works, you will gain weight. At my worst I was 89 pounds, but now i am a healthy 120. (5 feet tall female) With Crohn's weight tend to go up and down, but the weight change does not need to be specifically drastic, although in some cases it is. I tend to bounce up and down between 110-120.

5. Anal fistulas may reoccur after surgery or they may not. It all depends on your particular body.

6. It's common for people with Crohn's to have surgery, but not everyone has surgery. Of those that do get surgery, some of them just need that one surgery, but other people will require multiple surgeries. Crohn's is not the same for everybody. Some people have a very mild case and some more severe. Some people respond to certain medications, and some do not. It's a matter of trying different things (diets, medicince, possible surgery) to see what works for you. My grandmother never had to have surgery for her Crohns, but I did have one surgery where they removed a small portion of my intestine. Now I'm doing pretty well, for the mot part.

7. NO!!!! If you marry, you'll marry a woman who loves you during "sickness and health" Crohn's is not a fun disease, but it can be managed. There may be times that you will be in pain, or be tired, or cranky, or have to poop alot. But that's not going to ruin someone's life. Nobody is perfect!

8. Crohn's should not affect your fertility. You should be able to have kids.

9. There is some evidence that Crohn's is passed genetically, so your children would be at a higher risk for getting Crohn's, but they are not guaranteed to get it.

10. You cannot give Crohn's to someone through sex.

11. Crohn's is chronic disease, which means that people tend to have complications that pop up over and over during a lifetime. But as stated before, the disease is different for everyone. Some people have very few complications and some people have more. The key is knowing how recognize and treat complications as they come up.

12. Everyone will die someday, whether they have Crohn's or not. But Crohn's does not affect life expectancy. There are ways to die from Crohn's but they happen in very very extreme cases, only a small percentage of the time. A typical person with Crohns can be expected to live as long as everyone else, I think.

13. When you aren't feeling good, sexual interest/performance may decrease. Who wants to have sex when they feel like poo? But once you are feeling better, things should go back to normal .

14. GI bleeding can be dangerous, but if you are being monitored by a doctor that is good. Lots of us have ulcers in the intestine that may be irritated or bleeding. Your doctor should put you on a medicine that should reduce the inflammation and allow the sores to heal and the bleeding to stop. A warning sign of a bad GI bleed is black, tar-like poop. If you ever have poop like that, you should call your Dr right away, or go to the Emergency Room. Seeing red blood in the toilet also warrants a call to the Dr or the ER.


i hope I have been helpful in answering some questions. This is great community here. Feel free to ask as much as you want and update us on how you are doing.

Thank you very much tzvia for the detailed reply...feeling positive now with your reply..:ysmile:

 

[guideme]

Hi everyone,

I am scared if Crohn's is fatal. Could someone share their real experiences.
I have felt shy and did not consult doctor for 5 years and finally got operated for fistula 1 week back. I regret this now.
Doctor advised me to have colonoscopy every 6 months to check for complexities. I am so worried can i lead normal life. or my life will be full of medicines, surgeries, complexities, fear, anxiety, uncertainity. I have so many family responsibilities. I am so worried how would they live if i die with disease or how could they bear my medical condition through out my life. Why this happend to me. Life is so hard

 

[DJW]

It's important to follow your GI doctors recommendation . Better chance of catching potential problems early.

Keeping the disease under control is the best way to avoid complications.
When iIwas first diagnosed treatment options were very limited . I had a lot of complications that still effect me today. Thankfully I'mon rRemicade and it's working great.

So is it fatal? Serious complications can be. Proper treatment is crucial.
DON'T let Crohn's rule your life. Adjustments need to be made during flairs but that's it.
I still loved my life to the fullest as much as possible.

Anxiety is very common. Talk to your doctor about your concerns. Help is available.

Sending you my support.

 

[ronroush7]

Welcome to the group. You have a lot of support here. In 1989, I had two surgeries; one for hemmr

 

[ronroush7]

My message sent before I wanted it to. In 1989, I had surgeries for a fistula and for hemorrhoids. I had trouble healing from both. A doctor determined I had Crohn's Disease. In 1992, I had an abscess that had to be drained and twice. In 1994 and 1997, I had fistulas. After that last fistula,I went into remission for eight years. In 2010, I had an obstruction and needed a resection. Be encouraged. There is a lot of support here. Keep pushing your doctor until you get the right mixture of medicines. I agree with DJW.

 

[Madhu]

Your questions look like you're from India and you look at arranged marriage. I am from India too and I understand what you are talking about! Well, its simple. What if you had got Crohn's after marriage? Would she divorce you? No! My husband is a Crohnie and I don't love him any less than before. Infact I love him more for being a strong person and battling this disease.

This is not a fatal disease if attended to. Do not ignore it any further and get treated. Tzvia's answers are spot on. I hope you feel better soon

 

[tzvia]

Hi everyone,

I am scared if Crohn's is fatal. Could someone share their real experiences.
I have felt shy and did not consult doctor for 5 years and finally got operated for fistula 1 week back. I regret this now.
Doctor advised me to have colonoscopy every 6 months to check for complexities. I am so worried can i lead normal life. or my life will be full of medicines, surgeries, complexities, fear, anxiety, uncertainity. I have so many family responsibilities. I am so worried how would they live if i die with disease or how could they bear my medical condition through out my life. Why this happend to me. Life is so hard

Why do you regret getting the fistua operation? Are you healing a little more since your last post? You should listen to your Dr's advice, and it might be possible that he only meant every 6 months for a year or so....and then less. (maybe) With Crohn's, things go up and down. There are high points and low points. But life is full of high points and low points anyway. I don't know how severe your disease is but Crohn's related deaths are very very rare. How are you doing now?

 

[ronroush7]

I normally have to have a colonoscopy every two years.

 

[tzvia]

Yes, I get them about every 2-3 years, not every 6 mo. Maybe your Dr just wants this for now, but not forever

 

[Christi]

How often is one supposed to get scoped ill be having my disease 2 years in march? guideme i hope you feel better support your way

 

[ronroush7]

How often is one supposed to get scoped ill be having my disease 2 years in march? guideme i hope you feel better support your way

I think it might depend on your age

 

[guideme]

Hi,

Anal Fisulas were diagnosed. Seton has been advised.
Doctor advised me to take biologics (infliximab) 3 times (one is now and next is after 2 weeks and another one after 6 weeks). He also told me that i will gain weight and this disease will go away with 3 injections. Is it true. Does anybody take biologics here and what resuls have you got.How long this would help in remission.
Having fistulas and advising biologics ------My friend told me that it means mine is severe case.
When Crohn's was diagnosed first time it was moderate and in sep 15, it is confirmed as mild and in Dec 15 it is confirmed as moderate. I was not on any medication till dec 15. Then why my disease has seen fluculation from moderate to mild

 

[ronroush7]

I, personally, don't see how a doctor can say that the disease will go after three injections. It might go into remission but no one is ever healed from Crohn's unless there is a miracle from God. I would personally seek out a second opinion. This is my third biologic and I am still dealing with the disease. Best to you.

 

[Madhu]

That is what I heard happens in India. The docs are hesitant to be on biologics long term, so they put them on just 2 or 3 doses. I don't understand how they think the disease goes to remission after that. Clearly it doesnt, for many. I don't know what options my husband would have if we ever have to move back to India. Its currently a scary thought for me