Newbie - PLEASE HELP

[sl.calvin]

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Hi, my name is Calvin and I've had Crohn's for 4 years. I achieved remission in 2009 with Methotrexate until May 2011 when complications came. I started to have a mouth infection and couldn't eat at all. No doctor knew what I really had. After I was treated, I started to have arthritis on my left knee and had to stay on antibiotics and IV (needless to say I also had an abcess forming near my bowels). After getting out of the hospital and feeling a bit better, in less than a week, I went back in due to severe pain. Nothing calmed my flare-ups and I had a microperforation in my bowels. I had to get a part of my intestines removed. 21cm from small intestines and 29cm of large intestines. They had to reconnect them during it was really inflammated and they WISHED it stay connected. Didn't happen. I had up to 4 litres of "feces" in hy tummy and they had to re-open me urgently. I had an ileostomy for 3 months and they connected me recently. Awful summer, missed my first semester of Cegep, and now, all I can wish for, is to feel better. I am on Remicade right now and dropping my Prednisone dose.

It's been a week since they reconnected me (Operation went really well, no flaring, good condition), I began with some diarheea but thought it was fine. But now, I'm a bit worried, I'm still having diarheea but kind of formed. What I don't like is I went to the bathroom 5 times today (not a lot of stools each time). I have a little bit of pain in my descending colon.

I'D REALLY LIKE TO KNOW HOW I CAN TREAT MYSELF WITH SOME NATURAL TREATMENT (SUPPLEMENTS OR FOODS I SHOULD TRY). I really need help... I've gone through too much and I just really want it to stop...
I'm just 17... I really want a break... and a long one.
I registered to this forum to get help... I don't know what to do anymore...
PLEASE HELP...

PS: I also posted this on the Support thread.

 

[Nica]

Hi welcome to the forums.

Crohn's is a really hard pill to swallow at times. I know I have had it for almost 12 years.

I can't suggest an herbal therapy for you as none have worked for me, at all. I have tried several.

Some ideas I have for you are LDN there is a sub forum about it on the treatment thread or Humira.

I would call your GI if you are starting to get symptoms back lowering your pred dosage. Maybe you need to up it again and taper more slowly.

 

[Lisa]

If it has only been a week since your last operations, what you are experienceing MAY be 'normal' - your bowels may still be getting used to working properly again. I would check with your Dr to see how long they expect you to feel pain and when you should expect your bathroom trips to be more normal.....

 

[Astra]

Hi Calvin
and welcome

I can't help you with this, not had any Crohns surgery myself, but there are others on here who will be along to help you.
Hang on in there
lotsa luv
Joan xxx

 

[TMPerry]

Calvin,

I was diagnosed my freshman year of college and I had to wither away before they did exploratory surgery. After 4 hours I came out with 3/4 foot of my small, foot and half of my large and my entire illium removed. Along with some other things crushed. After removing that much of my colon, I get worried if I have a solid stole. My understanding from my previous doctors now going on 20 years, due to the decreased colon less absorbtion is done. Also as result, I am severe aneamic because the illuium is where most of the vitamins are absorbed.

Sorry there is no miracle, but some words of wisdom "CHARMIN" or the softest Toilet Paper you can buy and sometimes if it is really bad (for example, my body does not like rich foods such as crab, pork, or some other shell fish) by baby wipes.

I agree with the previous, that they might be taking you off of predisone to soon. I think after my first re-section I was on it for at least 6 months along with my maintanence drugs.

Keep Smiling This Too Will Pass,

TMPerry

Diagnosed December 1991
Med List
Asacol
Nexium
Iron Infed
Folic Acid
Vitamin E 800

 

[aliciars]

I have heard that David Klein has some really helpful books about acheiving remission naturally. I haven't bought them yet - but I keep hearing about them.

That's all I've got for you as far as something to try.
Hope you find some relief soon.

 

[Kairos]

I'm 33 and going on 17 years with Crohns. Best thing I can advise is be prepared for the worst, so when it hits you'll be ready. It'll also help you appreciate the times you feel well. I wish I could suggest something but nothing has really worked for me recently. I've been flared up probably 30 of the last 36 months. Lotsa rest, and antiinflammatories. Identify what works for you and stick with it. Be willing to try anything. Good luck.

 

[Liam]

Hi Calvin, welcome to the forum.

Try not to panic (easier said than done, I know), this will almost definitely sort itself out. I know exactly what you are going through.

In summer 2010, I had a large segment of my small bowel removed, and after the second surgery, it took ages for my bowels to get moving again, then when they finally did get moving, they didn't seem to want to stop.

I was going toilet anywhere from 6-15 times a day for the first few weeks, after the surgery. I was worried that it wouldn't settle down, and I was convinced that it was going to be like that forever. And I know this is the case for many people after they have just had surgery. But things do settle down, which I know might be hard to believe right now, and it may take weeks or a few months, but I'm certain things will settle down for you.

The bowel needs to sort itself out again and to develop and new routine. And this can vary in the amount of time it takes from person to person. There are certain foods that are advisable to eat post-surgery, as these will stay in you longer. Stuff like bread, potatoes, chicken, etc.

Vegetables, fruit and too much water may make you need the toilet more, at least that is my experience of too much water & veg.

The best thing to do right now, is to relax and if you feel up to it, maybe create a food diary and jot down all the foods that appear to go down well, digest well, stay in you for longer etc, as this will help also.

I wish you the best of luck for the future and I hope things settle down for you.

 

[Liam]

Calvin, if things are really bad, and you are dehydrating yourself due to diarrhea, then it might be advisable to see your doctor or consultant about prescribing you some anti-diarrhea tablets.

I thought about this myself and nearly asked for some, but I was advised that it is best to let the bowel settle down naturally without any medications or interventions. But everyone is different, we are all individuals, ask your doctor and see what works for you.

Best wishes,

Liam

 

[Sue-2009]

Calvin...Peace and hugs to you! We've all been there! Hang in there...Hopefull it will get better sooner rather than later...Glad you found us! Remember...today is better than yesterday to get crohns. We have more med, research and online support than ever.. As if that helps! I feel for you...Stay strong, lean on friends family and us! There is sunshine after a storm. Sue

 

[Josephine]

Hi Calvin,
Welcome to forum.

 

[stargazer]

Aloe vera juice supposedly works wonders. I have not tried it personally however. Iron is important and a good mulitvitamin. There is a good brand called Usona that makes a vitamin and mineral supplement combination and is easy for your body to process.