Burning questions regarding Crohn's

[-Rita-]

Hello all! I was recently diagnosed with Crohn's disease and I have a lot of questions regarding the matter. Some of them are really dumb but I'm curious about it. :sign0085:

1. Is it possible to become infertile because of Crohn's?
- I know this is a stupid question, especially coming from a 16 years old, but my friends have been asking me about this a lot lately. I've always had the dream to have a big family and this question popped up during a conversation at school "What if this makes you infertile?". It quite worries me because I've always wanted to have my own children. I really would love to have this one answered because it's the one that scares me the most.

2. How should I treat my anemia?
- I had a severe anemia before being hospitalized and I was still being treated when all this happened, which forced to me stop the treatment. I was taking Legofer once a day between meals and stopped 2-3 weeks before being hospitalized. The doctor said I shouldn't worry about this but it still worries me because I wasn't fully cured. What should I do?

3. Is it true that salad is bad for you?
- I love, love, LOVE eating vegetables. I would eat salad three times a week before being hospitalized. When I was hospitalized they cut vegetables and said it was bad for me, however, my doctor said I could eat everything. She told me that I could eat salad if all vegetables are prepared without seeds, but other patients told me not to because it's bad for me anyway. Being anemic, I used to eat tomato very often to help with my anemia but now I don't know what to do.

4. I can't do exercise. Why?
- I was a very active person. I was a dancer, choreographer, played basketball, was a swimmer (I'm now injured), ran a lot, I also did gymnastics and I'm part of the acting club, but now my doctor said I shouldn't do any type of exercises during three months and never explained me why. I'm still waiting for those three months to finish and start my active life again but she told me to go there again when the paper expired to write a new one. Why??? I don't want to spend my life without exercise!

5. Can my younger brother also have Crohn's disease in the future?
- Although he doesn't show signs of it, I'm worried that my younger sibling may also have this disease in the future. Is there a possibility for this to happen or is it just all in my head?

6. I became lactose intolerant, is this normal?
- While I was at the hospital, it was diagnosed that I was partially lactose intolerant. This has never happened before! I've always drank milk since I was little, I drink it every day, twice a day. I now drink lactose free milk because I'm scared it might be bad for my intestines and take calcium pills (Dagravit once a day before or after meals) prescribed by the doctor. Could this perhaps have been caused by Crohn's?

7. Is coffee bad for you?
- I know this is also a stupid one because everyone keeps saying yes, but I was told that I could drink coffee even with Crohn's and now I'm confused. Is it bad or not?

8. Panic attacks, anxiety and stress, can Crohn's cause this?
- The question says it all, can this disease cause all of this? I find myself stressed out all the time and having attacks because of the most minor things. I can prove it because when I have panic attacks my brain automatically forces me to clean something (and yes, it actually happens A LOT! and my mother actually enjoys this problem with me hahaha. Less work for her because her child needs to clean to calm herself down.) to calm myself down. I get so nervous to the point I once cleaned the whole floor with a brush from the kitchen to the bathroom (and it's a long way). So, can this be the cause for my recent attacks?

9. My hands shake all the time, is this normal?
- This started by the time I was hospitalized and hasn't stopped to this moment. My hands shake all the time to the point where I find myself unable to write or eat. I was told it could be because of the medicine I'm taking but I'm not really sure about it. Is there a solution for this?

These are just some of the questions I have. You don't need to answer them all but one or two would be nice. I hope I can also help people with the same questions find their answers. In case I have more questions, I will post them here later.

Thank you! :ylol:

 

[Robrich]

Hi Rita

Some tough questions
I will try a few
1. Never heard of becoming infertile due to crhns. Many crhns patients on this forum have kids.
4. Never heard of that either. Exercise and plenty of sleep have been found to be helpful for crohns patients.
5. There is a genetic component to crhns so yes siblings and offspring can be susceptible to it but I think the correlation is rather low like less than 5%.
9. What meds are you on? Possible its from the anemia which you should treat.
Good luck hopefully others will respond.

 

[Robrich]

One more
3. Salad and raw veggies may not digest well esp during a flare. But veggies are very important. Try them well cooked/steamed. Carrots, Squash, sweet potatoes and most other veggies should be well tolerated when cooked. avoid seeds and heavy skins. Same for fruit.
Purées work very well too. Just depends what works for you. Trial and error.

 

[-Rita-]

Hi Rita

Some tough questions
I will try a few
1. Never heard of becoming infertile due to crhns. Many crhns patients on this forum have kids.
4. Never heard of that either. Exercise and plenty of sleep have been found to be helpful for crohns patients.
5. There is a genetic component to crhns so yes siblings and offspring can be susceptible to it but I think the correlation is rather low like less than 5%.
9. What meds are you on? Possible its from the anemia which you should treat.
Good luck hopefully others will respond.

Hello and thank you for your reply!
Regarding the last question you answered, I'm currently taking four meds:

Esomeprazole - one pill every morning. This is a stomach protector I take every morning before eating.

Imuran - two pills a day. One after lunch and one before going to sleep.

Prednisolone - one pill a day but this one is slowly being cut.

Dagravit - one pill a day before or after meals. This is calcium because of the Prednisolone side effects on my bones and the fact I'm lactose intolerant.

 

[Robrich]

Can't speak for the esomeprazole you may want to check the drug info for possible side effects. Dagravit shouldn't be an issue but can't really say. But you might want to add magnesium maleate or mg glyconate to help with calcium absorption
Prednisolone possibly could contribute to the shaking.
I would guess it's mostly the anemia and general stress from the disease.
BTW there are some great threads here about diet. You should check them out. Bottom line it seems is we all have to find the diet that works best for us individually.
Generally when in a flare keep your diet simple, with easy to digest wholesome foods.
When you feel better you can add back in other foods and see how you do.
Good luck.

 

[-Rita-]

Can't speak for the esomeprazole you may want to check the drug info for possible side effects. Dagravit shouldn't be an issue but can't really say. But you might want to add magnesium maleate or mg glyconate to help with calcium absorption
Prednisolone possibly could contribute to the shaking.
I would guess it's mostly the anemia and general stress from the disease.
BTW there are some great threads here about diet. You should check them out. Bottom line it seems is we all have to find the diet that works best for us individually.
Generally when in a flare keep your diet simple, with easy to digest wholesome foods.
When you feel better you can add back in other foods and see how you do.
Good luck.

Thank you very much! I will check them with my parents and try out the tips! I'll also talk with my doctor about my shaking problems and see if there's a solution for this - it not only becomes stressful not being able to hold something but it also affects my daily life.
Keep up the good spirit! :thumright:

 

[duh panda]

1. Is it possible to become infertile because of Crohn's?

Crohn's disease itself cannot cause infertility as far as I've been informed or seen in any studies. However, there are some medications that can impact fertility or the well being of a fetus. Methotrexate is the big one that can have a highly negative impact on a fetus or infants who come into contact with bodily fluids due to traces of the medication. There are some medications that are more or less ideal for when you wish to pursue pregnancy and can effect how you choose to pursue treatment. Because having a family and having children is very important for you make sure you advocate for your well being on this front - make sure your doctors know that you wish to preserve your fertility because having children is a priority for you.

2. How should I treat my anemia?

Anemia is often a biproduct of crohn's - once your crohn's is managed hopefully your anemia shouldn't be an issue any more. I was always informed to be wary of iron supplements, which is what's most often provided for anemia, because it can irritate stomach lining and cause more issues then it solves. Anemia generally isn't a huge threat, but it can contribute to low energy levels and quicker fatigue upon exertion having an impact on day to day ability.

3. Is it true that salad is bad for you?

Salad isn't necessarily bad with crohn's, but it's highly dependent upon how active your disease is, how the disease presents (is there stricturing? fistulas? these complications often require a low-residue diet to lower likelihood of intestinal blockage). I have severe stricturing and narrowing of my small bowel, portions of the large bowel and a couple masses that have cut intestine space for passing food in half or less. I still enjoy salad, but i keep it as a small portion and only 2-3 times/ week. My limit for vegetables (specifically raw vegetables) changes frequently - it's a balancing act and you learn what your body does or doesn't tolerate through experience and time. My general guidelines when it comes to food is no seeds of any kind (I will scrape them off of cucumbers, zucchinis, watermelon - i dont care how soft they are, i remove them), I remove all skins from foods (including softer skins such as on zucchini). Diet is so controversy with crohn's I tend to try to avoid the debates on if one diet or approach is better then the next, my idea is to eat according to what my body can or can't work with - despite a long history of complications, I have not had a complete blockage which I think has a lot to do with learning to finally prep my food how I need it rather then avoiding foods or entire food groups completely.


4. I can't do exercise. Why?

I'm not sure why you'd be instructed to not exercise... being able to exercise (walk a flight of stairs, do some laps around the floor) was key for me being discharged when I was initially hospitalized/ diagnosed at 16. It might be that they don't want you to be exerting at a high level. Walking, gentle exercises (yoga, swimming - low impact) are usually encouraged and can be beneficial for getting adequate blood flow into the digestive tract so it can function as it should. I suggest clarifying with your doctor whether or not you can resume activities as long as your pain levels are okay.

5. Can my younger brother also have Crohn's disease in the future?

Your younger brother's odds of having crohn's in the future are the same as what yours were or anyone else's is. Sometimes, multiple members in a family may have crohn's/ IBD diseases. They have found some genetic markers for crohn's but nothing precise enough to be able to claim crohn's is genetic or runs in families. So for now, yes your younger brother may get crohn's but he is not at a higher risk for the disease just because you have it.

6. I became lactose intolerant, is this normal?

Lactose is broken down in the (stomach? I think) and absorbed in the small intestine. If you have inflammation or active disease in the small intestine it may inhibit or slow the absorption of lactose causing temporary lactose intolerance. Yes, it may be a result of the crohn's. If you were tolerant of lactose and dairy before diagnosis you should be able to enjoy foods containing lactose again after active disease is treated/ managed and your symptoms decrease. That said - even when my disease is on its best behavior rich dairy heavy foods like a milkshake can seriously throw my gut for a day or two. You may not tolerate as well as before, but there's hope and possibility


7. Is coffee bad for you?

Again, this goes with diet so whether or not coffee is bad for you depends on who you talk to. Is coffee a huge treat for you? If it's something you enjoy and as long as it's not doubling you over in pain coffee should be fine - same as tea. In excess, certainly bad but if it's a treat or one cup a day sort of thing it's key to keep enjoying things you love - if coffee is one of those things may want to test how you feel after drinking it. Keep a diary for a month, 2 weeks while drinking coffee, 2 weeks without drinking coffee and see what you think upon review.

The idea for why coffee may be bad for crohn's stems from the idea that the disease complications all stem from initial inflammation of the lining, caffeine is a known inflammatory so it may raise inflammation levels in the body thereby possibly increasing the severity or longevity of present symptoms. I cut out coffee first when inflammation levels are high or i'm experiencing disease symptoms because it's easier then cutting out other inflammatory foods like... sweets/ desserts. I'm a sucker for a great cookie etc. but this is 100% person choice and what works best according to what I am and am not willing to sacrifice.



8. Panic attacks, anxiety and stress, can Crohn's cause this?

Yep, sure can. Since crohn's effects the digestive tract it impacts your absorption of food and nutrition. So it's not the disease per say that causes this, but the symptoms and complications of the disease can impact nutritional status and malnutrition/ malabsorbtion of nutrients can effect mood, especially stress/ anxiety levels.

Your medications may also cause anxiety/ stress and lead to panic attacks. Prenisone (the main corticosteroid used in crohn's) works by effecting the adrenal glands which help control the release of the stress hormone in the body misleading your body to believe it's in a constant state of distress/ flight or fight and this is brutal on mood/ emotional well being.

I really urge all newly diagnosed, especially teens, to talk to a therapist who specializes in chronic illness and/or anxiety&depression to learn ways to work with/ cope with the many ways crohn's can impact your life. I am also a stress cleaner! Something about how methodical cleaning is is just so very calming/ satisfying. That said, it should always be a choice if it's becoming a compulsion it may be a red flag for not addressing or coping with the anxiety in a way that gets it out of your system.

9. My hands shake all the time, is this normal?

If you are on prednisone, it can cause shakes. It usually takes about 2 months for mine to go away each time i start a new round of prednisone.

IF it is this, make sure you are taking medications at the same time ever day - especially any corticosteroids because of how they are processed by the body.

I find for prednisone/ corticosteroids the best time is 8 a.m. since this is when a human body naturally produces the hormone it replaces in the adrenals the side effects are less severe if I time it with this instead of working against it and taking whenever I feel like it. Prednisone/ corticosteroids can also impact blood sugar levels and result in temporary diabetes or blood sugar imbalances - can result in shakes, weakness, dizziness, anxiety, mood swings in my experience. If it's so severe that you're still having trouble eating or accomplishing basic daily tasks I'd bring up this possibility with your dr.

Whenever you have concerns, whenever you are confused or think you might have misunderstood your physician about ANYTHING don't shy away from picking their brain for more specifics or information until you feel you are confident and comfortable in your understanding and with the guidance they are providing you.

 

[-Rita-]

Wow! Thank you so much Duh Panda! That was great information! I feel like weight was lift off of my shoulders, thank you! :thumleft:

I'm thinking of starting to write a small diary regarding my disease and my everyday symptoms along with my questions to show to the doctor next time I visit her. I'll probably do it next month and show it to her. :ylol::ylol:

Keep up the good spirit! :thumright:

 

[smt]

The risk for siblings is as under:

http://www.ncbi.nlm.nih.gov/pubmed/12465729

RESULTS:
Older siblings are associated with a graded increased risk for ulcerative colitis (P for trend <0.001) and an adjusted odds ratio of 1.15 (95% CI 1.07-1.24) for three or more older siblings. Younger siblings are associated with a graded decreased risk for Crohn disease (P for trend <0.001) with an adjusted odds ratio of 0.83 (0.76-0.90) for three or more younger siblings. The greatest protective association with Crohn disease was seen for younger siblings born within 2 years of the subject. Older maternal age is independently associated with a decreased risk of Crohn disease, with P for trend <0.001. Additional adjustment for social class did not substantially alter the results.

 

[smt]

An excellent article: http://www.ccfa.org/assets/pdfs/WomenandibdFamily-IBD-Link.pdf

The lifetime risk of developing CD for a first-degree relative of a CD patient is 5-8%. The lambda value for a sibling is 35.

 

[smt]

As far as I can understand, the chances are considerably more that your brother would develop CD than a member of the general population. I would beg to disagree with duh_panda on this. The article says this.

 

[-Rita-]

An excellent article: http://www.ccfa.org/assets/pdfs/WomenandibdFamily-IBD-Link.pdf

The lifetime risk of developing CD for a first-degree relative of a CD patient is 5-8%. The lambda value for a sibling is 35.

Thank you for your reply!
I was really worried about my sibling because we have a large family background related to chronic gastric diseases and the idea of him possibly having it as well came up during a visit to the doctor where she talked about my background and it worried me. As long as he's okay and has a decreased chance of getting it it's okay with me. I prefer to be the one having the disease instead of him.

 

[smt]

Yes, the probability is 5-8%, but as I said the lambda value is 35. Lambda is the relative risk of developing a disease in siblings as compared to the population prevalence. Let us hope that he would not have it. Sending my best wishes to him.

 

[duh panda]

Wow! Thank you so much Duh Panda! That was great information! I feel like weight was lift off of my shoulders, thank you! :thumleft:

I'm thinking of starting to write a small diary regarding my disease and my everyday symptoms along with my questions to show to the doctor next time I visit her. I'll probably do it next month and show it to her. :ylol::ylol:

Keep up the good spirit! :thumright:

I highly suggest journaling a bit every day regarding disease. After a time it all becomes so jumbled it helps to have a reference for myself and for my appointments.

My journaling on crohn's usually takes a list like format where i just quickly scratch down how things are in various categories such as weight, emotional wellbeing, pain level and location(s), fatigue, exhaustion, appetite and current status of any symptoms as well as what exercise I pursued for the day. If I'm playing with diet i'll throw in what foods i'm working with so I have a more reliable memory then just my recollection weeks or months later.

You so got this!

 

[duh panda]

Smt - thanks for sharing a link and solid info. Glad we're starting to see numbers to back theory. It has been a while since my diagnosis so a lot of related topics, such as whether or not crohn's is seen through a familial link, are most probably out dated in my mind.

 

[Maudddy]

For the question of lactose intolerance, I also tested positive for that.
So I started just like you with a dairy free diet (for 6 months or so), but I noticed that I didn't feel any different. So I slowly introduced milk products again and didn't have any problems with that at all. So I am back on a normal diet milk wise. I am not a big milk consumer like you said you are, but this was a good way for me to try it out.
So remember like duh panda said diet wise it really is trial and error!

 

[smt]

As regards the first question, the following is an excellent resource:

http://www.ccfa.org/assets/pdfs/pregnancyfactsheet.pdf

I think this is an important point:

"Heredity
It is possible, but certainly not inevitable, that a child of a parent with IBD will have it too. If one parent has Crohn’s disease or ulcerative colitis, the chance of a child developing the condition is approximately 2-9%. If both parents have IBD, the child’s chances may be as high as 36%. "

 

[ronroush7]

Hi, Rita. I am anemic and try to take some kind of iron supplement. Instead of dairy, I do almond or coconut milk because I am lactose intolerant. Coffee aggravates my. Crohn's disease. I wish the best for you.

2

 

[Caitlin84]

Prednisone makes me shake and it makes me anxious and agitated. It took a month or two after I stopped taking it before the shaking went away.

Salad is not something I can eat w/o diarrhea. Sometimes I eat it anyway and just deal with the consequences. Same with any other trigger food. It depends if I'm in a flare or not as well.

My little brother doesn't have any digestive problems, so its obviously not a guarantee. But if he does get it, he has a big sister to help guide him through it.

I also firmly recommend a therapist. Helpful in many ways.

Sorry to hear about the diagnosis, hope you find the support you are looking for here.

 

[-Rita-]

I would like to thank all of you for all the support and answers you've been giving me. It's amazing how this community works.
I've used some of your tips and started looking at my diet more carefully and scratching out things that are doing me bad.
I'll also talk with my doctor next time I see her and I'll discuss all these matters with her as well.
Thank you all!
Keep up the spirit! Bless you all !

 

[ronroush7]

Bless you, Rita.