Thanks to everyone who has been sending me their experiences and comments about the website. It's been quite a year! It's really nice to know that lots of people are getting some good use from it. Here's a sample of the mail I've received. Some letters have been edited for space. If you want your e-mail address displayed by your comments, be sure to let me know. Otherwise, I won't put it up. After all, we all value our privacy! Several people have a nasty habit of not fully typing their e-mail address, especially on the forms. "TBM121399" is not a complete address. I must also have the "@wherever. com" to send you a reply. So please, send all of the information for an accurate response. One more thing: I get so much mail everyday that sometimes I accidentally overlook a letter or two. If you don't get a response in a few days or so, e-mail me again and remind me, please! Thanks for you help, and your mail!
My name is Sonya and I have, guess what, Crohn's Disease. One thing I
find hard is taking pills. I should mention that I'm 16 years old so this is a
pretty baby-ish thing. I know it's a simple thing for most people, but for me
it's torture. I feel like I'm going to choke on a pill if I don't crush it
up and take it in some juice or something. Of course some pills taste disgusting
even in juice. I would really appreciate it if you posted this on your web
site so that maybe some other people with the same problem could comment or
help.
I am not a teenager anymore however I was diagnosed with Crohn's when I was
11 years old. Before I was diagnosed I went through three
hospital stays--one in my area and two in Birmingham, AL at Children's Hospital.
It was a very tough time. I started out as an overweight kid and wound up
barely weighing 60 pounds and losing a pound a day. After being diagnosed
I was placed on Prednisone. At the time I couldn't swallow pills so
my mother would crush them up every morning and dissolve them in coke for me to
drink. (By the way if any of you have supportive parents or a supportive someone
who is going through
this with you, you should let them know how much you appreciate them. I am
a mother now and I can now relate to how tough it must have been for
my mother during this time--to watch her child suffer and give up her whole life
to stay there and be strong!) Anyway with the Prednisone came this huge
appetite. I went from eating nothing to eating everything! My
friends at school didn't understand why I was losing and then gaining all the
time because every time I tried to come off the Prednisone, I got sick and
started to hurt again. Finally, the dreaded news came: SURGERY. I
remember crying in the doctor's office when I thought of how much school I would
miss. I was only 14 and very scared. When the day came I was
surrounded by lots of friends and family. When it was all said and done I
had had a small bowel resection with four feet of my small intestine
removed! But the best part is now : I am now 26 years old, married
with two children
and a great life. My surgery was almost 12 years ago and I have not had
one day of problems since. You see there Is HOPE!! Thanks for
being there as a resource and for listening and reading my story. I only
wish I had this type of resource all those years ago. Be thankful that you
have this connection with others.
I would like to thank my Lord Jesus Christ for saving me and then healing me.
Hi! My name’s Lowenna, I am eighteen and three quarters and I am British. I was diagnosed with Crohn’s Disease on 11/19/99, however I have been suffering with this condition for over five years. It has taken five and half years, 12 Consultants, 2 G.P.s, 8 hospital admissions and over 100 investigations to diagnose.
The first time I was admitted to hospital was with suspected appendicitis when I was 14. I saw the Consultant pediatric surgeon who ran several tests and could find nothing wrong so he referred me to a Pediatrician. This pediatrician had me readmitted to his hospital 30 miles away, he ran the same tests and again found nothing, so he proclaimed that I was suffering from a virus.
During the next few weeks my condition worsened, the abdominal pain intensified the diarrhea increased and the fever continued, as did the exhaustion. I saw the pediatrician several more times but he suggested nothing. After his comment ‘what shall we do with you, throw you away in a dustbin?’ – I never went back to see him again. However, I was readmitted under the initial Pediatric Surgeon who said that I was suffering from IBS and a virus (it was the only way he could explain the fever).
Over the summer several more symptoms started to appear so I was sent to see a Consultant Endocrinologist and an Orthopedic Surgeon (as I was suffering from severe lower back pain and an X-ray showed thinning of my vertebral discs). The Endocrinologist measured several of my hormonal levels and claimed that I had a high insulin level, which was the cause of my problems – even though this diagnosis ignored the abdominal and spinal pain. The Orthopedic surgeon did an M.R.I., which proved to be normal. Both consultants claimed that these were conditions, which I would grow out of, and no treatment was suggested.
Over the next 2 years other symptoms started to appear - my eyes would become sore and red for no apparent reason, my arms would ulcerate and I started to pass out. The latter problem was investigated but the rest were left.
Frequently I would complain to my G.P. about abdominal symptoms, especially pain (always on the lower right hand side) – however, she always proclaimed that it was stress. It was because of this comment that it took me over a year to pluck up the courage to go to the G.P. to tell her that I was suffering from rectal bleeding. This summer she sent me to the original General Surgeon who was involved in my case. I saw him after a 3-month waiting list and by this time the whole of my gums, lips, throat and tongue had become severely ulcerated and were continually bleeding. He informed that I had a fissure that was cause the rectal bleeding and claimed that my mouth ulcers were due to the stress caused by my recent A-level examinations – however, he did refer me to a Maxillo Facial surgeon.
After several more unsuccessful trips to the dentist and GP, I went to see my Consultant Endocrinologist and asked whether my ulcers were due to a nutritional deficiency – his reply was that ‘only people in the 3rd World and alcoholics get vitamin and mineral deficiencies,’ having done A-level Biology I knew this was not the case. As my condition was deteriorating and after finding out there was a 27-week waiting list to see the Maxillo Facial surgeon, my parents took me privately. Within 2 seconds of looking at my mouth he said I had Acute Narcotizing Ulcerative Gingivitis caused by my impacted wisdom teeth, he then took an armful of blood for testing. The following week he told me that the bacterial infection was due to a deficiency of iron. So he prescribed me iron and antibiotics, these seemed to help. Needless to say at this point we changed G.P.s.
The following month I went on a family holiday in France and ended up in hospital, seeing a Maxillo Facial surgeon – had more antibiotics, painkillers and anti-inflammatories.
By August the infection had occurred 4 times, each time requiring antibiotics. It is hardly surprising that with such a mixture of antibiotics, aspirin containing anti-inflammatories and painkillers that my abdominal symptoms got much worse. A locum GP told me that I needed an urgent referral to a doctor as he suspected IBD. The following week my new GP had me admitted to hospital (without meeting me) only to find that the consultant doctor was away on holiday and a replacement had not been found. I was discharged only to be re-admitted a week later on his return. By this stage I was suffering from unbearable abdominal pain, diarrhea, rectal bleeding, vomiting, weight loss, severe spinal and joint pain, mouth and throat ulcers, ulcerated arms and red, painful eyes.
The following day he did an endoscopy to exclude Celiac’s disease and a sigmoidscopy. Both proved to be normal, as was suspected as neither got to the area where I getting the pain.
Two weeks later I had a White Cell Scan (a blood sample was taking from a vein, the white blood cells were then isolated and labeled with a radioactive isotope. These white blood cells were then injected back into my vein and their localization was followed with a gamma camera) this test showed inflammation of my bowel (at the point where the ileum and caecum join), hip and mouth – therefore indicating that I have Crohn’s disease. To ensure that surgery is not necessary at present I had to have a small bowel barium meal follow through.
I am now taking Entocort for my bowel inflammation and although I have only been taking it for a 15 days it has already reduced my abdominal symptoms. I am using hydrocortisone cream on my lips – which has alleviated the horrific mouth ulcers. Furthermore, I am on Ensure Plus to prevent any further weight loss. I am informed that because the steroid that I am taking for my bowel is non-systemic (to prevent awful side effects) my eye and joint pain caused by inflammation will not be treated and therefore, once my Consultant is convinced the Entocort is working will consider treatment for these complications.
I am relieved now to know what is wrong with me and pleased that treatment may be commenced. Despite being ill when I did my A-level examinations I still managed to achieve AABB in Psychology (95%), Biology (91%), Chemistry and General Studies. However, in September, on medical advice I had to defer my University entrance, to read Experimental Psychology, until next year.
If anybody out there has suffered such a horrific ordeal in getting a diagnosis, or has suffered from the rarer non-bowel complications, or has had to defer University because of this disease please e-mail me. Also e-mail me if you are a vegetarian with Crohn’s and have been put on a lactose free diet.
I am not a teen, but I have Crohn's, and would like to share my wonderful
news with those who have it. For four years I had Crohn's Disease that was
not diagnosed. You can imagine the problems I encountered. I was afraid to leave
the house and nothing seem to help, I was embarrassed to dine out for fear I
would have an accident. Immediately after eating there was a "rush"
trip to the bathroom, and I would be screaming in pain.
My weight dropped from 162 pounds to 135 pounds. I am 5' 9" tall and looked
like death warmed over. Finally after much complaining to my doctor, I was
sent for a colonoscopy, since the doctor did not check the small intestines; he
found nothing. This continued for three more years, and I was treated
like a nut case. Finally one day I lost all patience with my doctor and
had a "temper fit" in her office. She sent me back to the doctor I had
seen before. I told him of my plight, and he in turn sent me to gastrointestinal
doctor. She found the Crohn's. I was immediately put on Pentasa. It helped
for awhile, but the Crohn's
continued to worsen. Then came the nasty Prednisone. I could not live with how
this medication affected me, and stopped taking it. I was told at that time I
would have to take a type of medication that was given to cancer patients. NO!!!
I was chatting with a cousin in TX whose brother is a doctor. She told me he
prescribed Cat's Claw's Bark for his Crohn's patients. I had never heard of it,
but she assured me that it worked. My "Vitamin Crazy" :O) Chiropractor
doctor suggested that I take Flax Seed Oil 1 Table Spoon 3x daily. I had nothing
to lose at this point, so I purchased the Cat's Claw Bark and the Flax Seed Oil
and began taking them. I ceased the other prescribed drugs. I took 100 Cat's
Claw Bark capsules 3, 3xdaily, and took the Flax Seed Oil. My last X-ray was
October 1, 1999. There was no sign of Crohn's Disease.
The Radiologist, I can't remember his name, was amazed. He promised to get
with a partner and take this medication apart and find out exactly what it
contained that worked. He encouraged me to send a message to the Crohn's Disease
web site and share my experience with everyone. It has worked and is still
working. I have gained back 14 pound. I now weigh 149 pounds. I am able to go
out with friends and have dinner, my energy is back and my husband is please to
have his wife back. I can walk across the room without being totally exhausted,
and he doesn't have to do the house work. :o)
I just want to see teenager have a good life and not have to suffer as I have.
It isn't necessary, believe me. This sounds like an advertisement for a vitamin,
but believe me it isn't. That is the main reason I have been reluctant to send
this message. I do hope it is helpful, I urge you to try it. I know, it sounds
to simple to be true. The first Cat's Claw's Bark I purchased was "Nature's
Best." The last bottle I purchased is Nature's Herbs; I take only 1 capsule
3xdaily. I would suggest going with the Nature's Best at first. Nature's Herbs
is much stronger, and 3 capsules 3xdaily causes the results of taking an entire
box of Imodium A-D. <grin>
I am 19 years old and I was just "diagnosed" with Crohn's not even
a week ago, December 3rd, 1999. I went in with complaints of my appendix and
after a series of less-than-pleasant pokes and prods, they took out my appendix
and ended up finding Crohn's in my lower intestine. It's a lot to deal with,
especially because I have never had any special stomach problems or
"flare-ups." I am a generally healthy person and don't see where this
is coming from. I went to see my doctor today and he told me he wants me to get
a second opinion from another doctor, so I am somewhat hopeful, but I am
prepared. I guess I feel a little depressed after reading your website because
the docs didn't make it out to be so bad to me and I am realizing that this is
much more serious than I once thought. I had no idea
of all the complications with lactose intolerance, and I am wondering if this
will affect me. right now i am recovering from my appendectomy, and will go in
week after next to hopefully get some more tests done (which sound less than
joyful!) and I am pretty scared about them. they have me on 60mg of Prednisone
right now and I am pretty scared about all the side affects. I don't want facial
hair or anything gross! my doc today told me to take it down to 40 mg's
tomorrow, so I am thankful for that. I go away to college and I am really
anxious about how this is going to affect me because my doc is over two hours
away and my insurance company will not cover me to see an doc "out of my
network" unless its an emergency. I'm hoping this wont affect me in my
performance at school, or my social life! Anyways, I am sorry for blabbing on,
but you seem really knowledgeable and ready to learn and help. if you have any
insight for me, I would love it.
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