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Crohn's Disease
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Posted 3/21/2012 2:23 PM (GMT 0)
I am a 15 year old girl and after suffering for some time, I was diagnosed with Crohn's in early february. I was diagnosed with a MILD case and was prescribed Pentasa, Peptac, Buscopan and painkillers for when I need them.

Lately the effects of the Pentasa have been taking their toll. I have been experiencing muscle aches + spasms, headaches and excessive tiredness. I am also have boughts of nausea and the pain I have been having in my lower right side has not decreased. I just cannot understand why such a "Mild" form of the disease is giving me so much bother. Its really getting my down.

Lately my attendance in school has been bad. I have caught up with the work I missed from being in hospital, but I have been feeling so bad recently that I've been taking days off or going to school and coming how early. My absenteeism is really starting to stress and worry my mother as it is my 1st GCSE year, and the strain of my condition is starting to affect family life.

I am trying to cope as best I can with my condition but the realisation that I will carry this for the rest of my life, hits me every time. It stings a little seeing all my friends going out places and doing teenage things and knowing, no matter what, that I will never quite be the same.

Ive also recently applied for a job in my local shop, nothing massive, just something part-time. I have an interview tomorrow evening and my mum is refused to let me go to it, because if Im to unwell for school, I am too unwell for a job. I totally agree with her view, but what she doesn't realise is that I see this job as a chance to start afresh. I hoped that this job would give me a chance at normality again and give me acceptance so that I can deal with my Crohn's, get on with things. I really want to try and improve my attitude and my attendance at school!

It would be greatly appreciated if anyone would write me to tell your personal experiences and give me a little advice! Please take just a little time to write and asap!

Soph x

Posted 3/21/2012 5:19 PM (GMT 0)
Hi Soph, welcome to the forum.

I'm concerned that you're not feeling well, and I have sincere doubts that the Pentasa is causing your problems. It sounds more like the Crohn's is causing these problems, and the Pentasa is not very effective at treating your inflammation.

Can you tell us more about where your inflammation is and what your symptoms were that led to your diagnosis? How long were you in the hospital and what was the first treatment you had?

The goal of treating this illness is for you to get better.  All the way better.  No problems with appetite or fatigue or achy joints or crampy belly.  Really, it can be done and often is.  So if you are not feeling better the thing to do is go back to your DR and talk about what's going on, to figure out how to change your treatment plan so that you can feel better and get back to your studies.

Posted 3/21/2012 5:45 PM (GMT 0)
I was in hospital for three weeks. I went to the doctors with severe pains in my lower right side and I had many boughts of vomiting. After the vomiting cleared I was constantly feeling nauseated. I was very tender to touch so the doctor sent me to A&E. They admitted me and did function tests, xrays, bloods, CT scans and a small bowel series. After doing the small bowel series they found inflammation on the small bowel and said it was a mild form. Since then I have been on the Pentasa and I'm feeling pretty miserable!
Posted 3/21/2012 6:19 PM (GMT 0)
Hi Soph, Sorry to hear you're having such a rough time! This darned disease can be rough even on adults, let alone being teen with active disease (((((((hugs)))))))))). If I were you I'd get back to see your doctor and let him/her know how you've been feeling. Perhaps they can try a different medication, there are alot of options out there. Are you watching you diet for foods that might be giving you problems? Sometimes finding out what foods might escalate your symptoms can help if you can eliminate them.

Take care, check back with us and let us know how you are feeling.
Posted 3/21/2012 7:20 PM (GMT 0)
Soph, did they treat you with any steroids while you were in hospital? Usually that is the first course of treatment, to get the inflammation to go down. Pentasa is really good as a maintenance med, not so good at getting you to remission.

Call your DR back, right away. And you should look into a Low Residue diet for now, to give your bowel a rest while it's inflamed.

For pediatric patients, a complete liquid elemental diet is often just as successful as steroids at inducing remission. You should talk to your DR about that as well.
Posted 3/21/2012 7:58 PM (GMT 0)
No they didnt put me on any steroids. They gave me the Pentasa and away I went. But thank you so much for letting me know. I didn't know that. I've booked to see my doctor on Friday and Im going to mention the steroids because I think they would really do me the world of good. Thank you so much again and I'll keep you posted to see what the doctor says/does! :)
Posted 3/21/2012 9:06 PM (GMT 0)
I was diagnosed one month before my 15th birthday. It started with a couple of weeks in the hospital for severe malnourishment, and I also had the IV steriods to help get the inflammation under control. When I went home for that 1st week out of the hospital, I was still connected to the IV for feedings at night. I remember thinking to myself at home that life would never be the same again.

Slowly, things get back to "normal" and time helps separate you from the memory of the hospitalization. Yes, there's still the realization of this disease every time you have to take your medication. I think the daily meds was probably the hardest thing for me.

But I agree with the above that it is important to first get the active disease under control. This CAN be helped by meds, but it can sometimes be difficult to find the right meds or med combo that work for you. Perhaps you don't respond to Pentasa. Or perhaps Pentasa is a good maintenance med, but you need the steriods to kick you into remission first. (I think that is the more common US practice. Steriods for a short period of time to induce remission. Another drug for long-term maintenance.)

My doctor tells me that continued pain, vomiting, etc. is not acceptable. If she gives me a med, but I'm not doing any better...still having the symptoms, I should call and see her for evaluation and a different medicinal approach.

Check out the link in my signature "Just diagnosed, worried about future?" There was a lot of good advice shared to another teenager last year who had these very same questions.

Good luck, and please keep us updated.
Posted 3/23/2012 5:42 PM (GMT 0)

SophNoph96 said...
No they didnt put me on any steroids. They gave me the Pentasa and away I went. But thank you so much for letting me know. I didn't know that. I've booked to see my doctor on Friday and Im going to mention the steroids because I think they would really do me the world of good. Thank you so much again and I'll keep you posted to see what the doctor says/does! :)

How did your Friday appointment go?
Posted 3/27/2012 9:06 PM (GMT 0)
Went to the doctors and explained how I was feeling. She said that all my problems were down to the crohns and not my medication though she refused to put me on steroids and referred me. She did a urine test, thyroid, blood picture, blood sugar, inflammatory markers, arthritis etc. . . Today when I got home I found out the nurses had called and said I had an underactive thyroid and I was put on a daily dose of thyroxine. Things are just going from bad to worst!
Posted 3/27/2012 10:34 PM (GMT 0)
I am sorry, I wish I could help but I have nothing practically useful to say :-/

The only thing I would say is that your disease does not sound "mild" to me. Mild disease does not result in a 3-week hospital stay. I would be almost inclined to recommend seeking a second opinion, but you probably don't feel like rocking the boat at this point and I don't know how much use it would be anyway. I wouldn't be very surprised if your mild diagnosis ends up getting revised at some point, though. It's been my experience under the NHS that most doctors tend towards downplaying disease severity, sometimes to quite a startling extent. It took years and a few "it's not as bad as it looks on the scope", but my disease was finally 'upgraded' to severe this year. What annoyed me about that was that the IBD nurse led me and my parents to believe I was practically in remission a few months ago. Anyway, won't bore you with the details, but long story short, I was anything but in remission. My dad was more bewildered by me than the whole thing, because I knew how bad I still felt...

Anyway. One thing to remember about Crohn's is that it can wax and wane at any time. Sometimes it does this of its own accord, without the aid of drugs. It might be that you had very bad inflammation at one point, but by the time you had the tests it had lessened. Another possibility is that the doctors simply missed some of the inflammation. It happens. The average human has something like 20 feet of small intestine and 5 feet of large intestine, if I recall my numbers correctly. It's not easy to reach all that bowel, which is why Crohn's is often a hard disease to diagnose.

Re steroids. I'm slightly surprised you weren't given any. That's probably down to your age (steroids can inhibit growth) and perhaps your so-called mild diagnosis. For the Crohn's, there is another option which has been proven to work as well as steroids, and that's a strict liquid diet. It works best in the young (for some reason) and for those with disease in the small bowel only. The drinks are special drinks which have to be prescribed and you can only drink those - you can't eat or drink anything else on the diet. The drinks can be in two forms: elemental and polymeric. Elemental is where all the nutrients have been broken down into their simplest forms, ie proteins into amino acids. Polymeric drinks is where the proteins haven't been broken down, but are whole proteins.

Recent studies have shown that the polymeric drinks work just as well and that's good. The reason that's good is that the elemental drinks taste absolutely foul: this I know from personal experience! I would always recommend a feeding tube for an elemental diet now - or simply switching to the much more palatable polymeric drinks. (Elemental 028 is an example of an elemental drink, Fortisip is an example of a polymeric one.) If you do do a liquid diet, the normal length of time to stay on it for is 4-8 weeks. After that, you don't just eat anything you like, but wean back to solid foods slowly through a reintroduction diet.

Erm... this may be more info than you wanted! I just thought I'd throw it out there as a possible alternative treatment, especially as steroids have been denied to you.

Anyhow, good luck. I am sorry about your thyroid diagnosis; hopefully somebody else can give you advice on that. Anyway, heh at me: for somebody who had nothing to say, I ended up saying quite a bit. >_>
Posted 3/28/2012 2:23 AM (GMT 0)
Soph, there is definitely hope that things will get better. In fact, a lot of people with Crohn's do well for many years. CDers in a flare are more likely to seek advice and support online than CDers who are in remission, so you are likely to find more ppl in a flare online.

I do hope that you will be one of the lucky ones who gets better quickly and can get back to being an active healthy teenager. Keep up with your doctors, follow their advice, stay away from foods that for sure cause you more symptoms, often dairy, wheat or gluten, fatty foods, sugary foods. Make sure to eat the veggies and fruits that you tolerate. Try cooking and mashing them, if needed.

I wish you well.
Posted 3/28/2012 2:30 AM (GMT 0)
Soph,

I am also on Pentasa and I have been on it for about three years now. When I was first put on it they had me take a steroid (Prednisone) to make the inflamation go down. So I am surprised they didn't put you on the steroid, as well. But everyone is different. I still have achy joints sometimes but its definitely tolerable... better than it used to be, I believe. Sometimes I do get tired and don't feel like I have the energy level I should as a college student. I have been having a harder time lately with severe stomach cramps and am thinking about switching medicines, although I would like to stay on Pentasa because it is one medicine that seems to have the fewest side effects. The most important thing is to find a medicine that works for you. I would give the Pentasa a little more time. And make sure you have a good doctor! I know how hard it is to find something like this out at such a young age. At times it can see truly unfair but just remember you are not alone and they are finding new things out each and every day.

HMJ
Posted 3/28/2012 2:47 AM (GMT 0)
Soph I am sorry I am not going to have alot of advice for you becasue we are also just being faced with Crohns. We were told my son Kota had Crohns a little over a month ago which was a few weeks before he turned 12.

He was put on Pentasa, 6mp and high doses of steriods, culturelle, nexium and a multi vitamin.

He says most days he feels like total crap. He has horrible cramping and goes back in forth between having the poops and not being able to go. He says he aches all over all the time. He is so tired he doesnt feel like doing anything but cant sleep either. He stays hungry because of the steriods and now has put on some extra weight becasue of them and that bothers him. He is homeschooled so that has been better becasue we do it as he feels like it during the day or night. But he is just so tired. We are also know dealing with high heart rate.

Our house has always been the house that all the neighborhood kids come to. They dont understand because Ko doesnt feel like doing anything. They are all a little younger than him.  Ko is the one they all look up to. And he doesnt want them to all know he is sick. He doesnt want to be treated differently or maybe made fun of. He has alot of other medical problems beside just the Crohns.

I know how you feel when you say you want to have a normal life. Thats what Ko wants also. And as a parent there is nothing we want more than for our kids to be free of pain and live as normal as you can.

Sorry I dont have any advice but please know you are not alone. Crohns is a horrible thing that turns lots of people life upside down. I pray they find a cure and everyone can be free of all their pain.

You are in my thoughts and prayers

Posted 4/4/2012 10:38 AM (GMT 0)
Hi Soph,

First of all to reply to your question, yes, it will get better.  There are many different kind of medication, and/or combination of medication, so I'm sure you will find something that eventually will work for you.  I totally understand how difficult it is to have this disease at your age.  I have a daughter who is 16, and one of her best friends has Crohns.  I know it's not easy for her, but my daughter is very supportive because she knows what Crohns means because of me!  She hasn't told everybody that she has Crohns, but her teachers know, and some of her very close friends, so she has a "support" group at school, if things get rough. Otherwise, she is a typical 16 year old girl, she goes to the mall, to a party, I know she doesn't drink alcohol, and watches her diet, but still has a lot of fun.

You know what I tell myself when things are bad? That there will be better days coming! And the more you believe it, the chances are higher!

Just keep reminding yourself, that OK maybe it's a disease we will have for the rest of our lives, but it's not life-threatening, and we can still enjoy and have fun, because there are a lot worse diseases than this one!

Keep your cheen up, and everything will be just fine!

Christina

Posted 4/4/2012 6:35 PM (GMT 0)
Hi Soph,,,, First I'm so sorry to hear you have this disease,,,and I pray everyday for a cure for you all.
My son has Crohns, and got it at age 33. At first they thought it was Colitis,,,but last year he developed a perianal abcess and later a fistula.
He has been on Remicade infusions for almost 4 years, and his Gastro doctor said it is what keeps his under control. He doesn't take any pills at all
and eats what he wants. Just goes in for an infusion every six weeks. Until this abcess and fistula hit him,,he was feeling normal, and now they think
it is Crohns because you don't really get abcesses or fistula's with Colitis, just diarrhea and pain.
I hope you are seeing a Gastrointerologist, and not just a regular family doctor, This disease needs a specialist to make you feel better.
I wish you well...keep us posted on your condition
Posted 4/17/2012 8:04 PM (GMT 0)
Well after pleading with my GP, she sent an urgent letter to the Gastro specialist in a bigger, more developed hospital in my area. I told him about everything, including the immense pain I've been getting lately. After months of being told I have Crohn's he told me that even though he is pretty much convinced, they still were not certain, so he has referred me to have a colonoscopy in the coming weeks and in the meantime, finally, he has put me on steroids, aswell as B12 and calcium supplements. I really am dreading this colonoscopy and don't feel I need it. Previous test have pointed strongly to the Crohn's and Crohn's is what I am being treated for. I really am sick to the back teeth of all this poking and prodding! It's stressful enough trying to revise for exams without worrying about a colonoscopy too. I've heard it's not too bad and I'll be back on my feet on no time but still!  mad  On the upside, my friends have been extremely supportive and understanding!

And Ps. Thanks to anyone who has taken the time and effort to reply. It's amazing to know that your not alone and people can sympathize. Maybe someone could let me know of their experience with a colonoscopy.

 And Littlebitsmommy, I really feel for poor Kota. I know what it's like to struggle every day, but try not to show it, especially to my younger sister. I really hope and pray that things improve for him and the family!

Regards,

             Soph x

 

Posted 4/17/2012 8:20 PM (GMT 0)
Well, a colonoscopy is the gold standard for diagnosis, and since you've had imaging studies that show inflammation the scope should find it, too. Biopsy will confirm. I guess one possibility is that you have ulcerative colitis instead of Crohn's, which might slightly change the path of treatment. In any case, I am glad you pursued better treatment and I hope the steroids help you feel better. It is worth noting that if you are taking steroids for long enough (more than a week) you might not have any inflammation on the scope. So you might want to hold off on taking the steroids for now.
Posted 4/17/2012 8:41 PM (GMT 0)
hey soph,

Buy L-glutamine powder , its an amino acid and its the primary source of nutrition for the cells of your intestine.
Posted 4/18/2012 2:53 AM (GMT 0)
Hey Soph!

I'm young just like you (22 y/o) and understand how devastating something like this can be to your life.  The poking and prodding is rough, but honestly, you just have to get used to it, because with a chronic disease needles are quite common.

I was also going to say that Pentasa really isn't going to be causing you any of those problems, it will be your disease.  Best thing to do is to attack your health problems from the core.

Don't worry about the colonoscopy!  It's plenty easy, no pain and from start to finish it is very quick!

Also, I definitely agree on the steroids!

As for the thyroid issues, do not fret over that.  It may be a pain now, but once you and your doctors are able to find the right medication for your thyroid issues, you will feel LOTS better.  Chances are, the underactive thyroid is what is making you feel really crappy.  As soon as you are able to take care of it, you will feel loads better!

Lastly, I would always talk to your doctor before trying new things.

We're all here for you for whatever you need!

Posted 4/18/2012 1:45 PM (GMT 0)
SophNoph - I had a colonoscopy last October and wrote about my experience here:

https://www.healingwell.com/community/default.aspx?f=17&m=2227884


It's a little lengthy, so I won't re-type the entire process in your thread. If you have any questions after reading about my recent experience, please let me know.

Posted 5/3/2012 8:49 PM (GMT 0)
Colonoscopy tomorrow! Aaaahhh! I've took 2 sachets of Klean Prep and in total Im supposed to take four. It says in the instructions that when your bowel movements are clear, you can stop. I haven't eaten a lot and I have fasted since about 6pm yesterday. When I look into the toilet bowl it is pretty clear with just a few of the tiniest little yellow specs. Can I stop now? I've vomited three times while taking the prep and I don't want to take any more if it's not needed. Write back ASAP!!!!!
Posted 5/3/2012 10:36 PM (GMT 0)
Yeah, you can stop now. I've not always taken the full amount of prep and it's been okay. Should drink some non prep stuff to replace those lost fluids, however. Vomiting + diarrhoea will dehydrate you quickly.
Posted 5/3/2012 10:49 PM (GMT 0)
Hey! I'm 15 have Crohn's as well! I've been in & out of the hospital & seeing a GI since I was about 18 months old. It gets old VERY quick. I've never taken Pentasa but I've taken simmilar meds & it can cause a lot of side effects. If your disease is mild that doesn't mean it WON'T hurt. It will hurt because of the horrid inflammation but your disease probably isn't severe inflammation wise &/or how much it affects your GI.

Mine affects my mouth ALL the way down to the anus. It does get better! I promise! I still have my days where nothing goes right but now that I'm on a good combo of meds, I'm getting better. I lost 85 pounds in like 8 months & I'm always trying to maintain it. IDK if you have that issue but I find high calorie snacks help a lot.

I miss at LEAST 3 days of school a week. I was out of school for a whole month due to me being hospitalized this year. I'll be a junior next year & although I miss A LOT of school I never stress. I've managed to keep all of my A's & B's. I'm also in HONORS classes by the way.

Try not to stress because that makes the disease symptoms worse. I'm here if you ever want to email me & just vent away or if ya have any questions & want to talk to another ten with Crohn's.
Posted 5/3/2012 10:50 PM (GMT 0)
Yes, when I did my prep I didn't drink all of the stuff. I wasn't even completely clear. I was still having light yellow liquid when I went. But I couldnt drink anymore. I told them the next day and they said that was fine.
Posted 5/4/2012 6:48 AM (GMT 0)
Thanks a lot, I was really unsure! I've been having that too. So nervous!
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