• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

GH and in remission for the first time in 5+ years

Hello Everyone,

This is my first post here, however I have been reading and learning different treatment options from all the abundant information contained in the site.

I was diagnosed with Crohn's 5.5 years ago and have had constant pain in my lower right abdomen and also constant bathroom trips with diarrhea. I would go to the bathroom at least 10 times a day everyday without exception. I would also have blood in the stool sometimes both black and red so it was coming from the upper and lower intestines.

I tried all the traditional medications to include:

1. Asacol
2. Prednisone
3. Entocort
4. Remicade
5. Nexium

I got a lot of the side effects such as high blood pressure, the shakes, really bad acne, high white blood cell count, etc. The medications did not seem to help that much especially for the side effects I was experiencing. I was starting to get very depressed that I would have this pain and diarrhea for the rest of my life.

I am a bit of a progressive thinker so did some research both on this site as well as the internet. I came across a few research articles that spoke about treating Crohn's with GH. I spoke to my GI doc about it and he was dead against it and wanted to try more traditional treatment options. I thought, nothing you have prescribed to me has helped and I had heavy side effects from it so I am going to put some faith in myself. He would not prescribe the GH to me so I had to get it a different way.

I started the treatment 6 days ago today. I am taking 2.5 I.U's of Kigtropin. I woke up this morning and walked in to the bathroom to get ready for work and something just didn't feel right. I started to think what was different and realized I had no pain in the lower right abdomen. It almost brought tears to my eyes as it was something that was constant for so long that I almost didn't even notice anymore unless it was worse than normal. I drove to work and didn't go to the bathroom until 9:45 for the first time and surprisingly it was solid and normal. I haven't had a normal deification in so long and also would have normally been on bathroom trip 4 or 5.

For anyone considering alternative treatments, I would highly recommend this as it has worked wonders for me. I will see how the long term effects are and report back, but so far, it has been a miracle for me. Thank you everyone that has posted their experiences with this treatment and good luck.

Rob
:)
 

Gianni

Moderator
I'm glad you found something that has given you much hope and immediate relief. I would like to see what happens 6 months, a year, two years while on the treatment. The placebo effect is very powerful and may be playing a factor here so that is why I'd like to see an extended timeline here. I too try to think progressively and am very interested in alternative treatments so please keep us posted on your results.

One last comment, you never mentioned what GH was. I am assuming it is a growth hormone? (HGH)?

Gianni
 
Hello Gianni,

I would agree that the pain could be a placebo effect, however the frequency and consistency of going to the bathroom would not be placebo. I don't think I could will myself to having solid bathroom visits and only 3 times a day now.

I will definitely keep everyone up to date on this as I composed a thank you letter to Dr. Slonim for his research on Growth Hormone and crohn's. He did reply to me a few hours later. I am going to schedule to see him at Columbia University Medical Center in New York in the next week or 2 as he said he had other supplements that he feels would be beneficial in addition to the Growth Hormone. This is the first promising thing since being diagnosed with this disease.

This is day 2 with no pain and normal bathroom habits. WOOHOO

Rob
 
Very very interesting. This is one of the drugs forgotten about, and never given the time of day, yet has 70%+ chance of remission in slonims study.

I've personally known 5 people that swear by this. No side effects. I think in slonims conclusion it mentions it could be a great alternative to remicade without all the side effects or cancer risk. I've had many conversations with dr Alfred slonim over the last 10 years about growth hormone. However CCFA dropped the ball again, in my opinion on purpose. Funding not results is the only reason why this is not a treatment option and approved for the use of crohns. There are just too many of these golden eggs just laying around. It's so unjust.

Anyways this post is just to support what you say. It may have been 6 days for you only, but I've seen years of remission from friends. Too bad you have to find alternative ways to get it. Try making appointments with endocrinologists instead of GI's and you might have more luck....definitely.
 
I had spaghetti with red sauce last night and did not get heartburn. This is a first also. I still have no pain at all in my abdomen. I spoke to Dr. Slonim via email and he is a really nice doc. Very educated and upbeat about helping all of us with this disease.
 
Seems like a good idea I did some looking it up it speeds up healing alot. This means anything you eat will cause attacking on a low level that you might not feel but the GH speeds up healing a bunch so you dont get the mucus and bleeding and going to the bathroom.

Long term effects I dont know what it could do with crohns. Many sports stars were banned with stuff that uses GH.
 
Problems caused when the body produces too much GH
The most common disease of GH excess is a pituitary tumor composed of somatotroph cells of the anterior pituitary. These somatotroph adenomas are benign and grow slowly, gradually producing more and more GH. For years, the principal clinical problems are those of GH excess. Eventually, the adenoma may become large enough to cause headaches, impair vision by pressure on the optic nerves, or cause deficiency of other pituitary hormones by displacement.
Prolonged GH excess thickens the bones of the jaw, fingers and toes. Resulting heaviness of the jaw and increased size of digits is referred to as acromegaly. Accompanying problems can include sweating, pressure on nerves (e.g., carpal tunnel syndrome), muscle weakness, excess sex hormone-binding globulin (SHBG), insulin resistance or even a rare form of type 2 diabetes, and reduced sexual function.
GH-secreting tumors are typically recognized in the fifth decade of life. It is extremely rare for such a tumor to occur in childhood, but, when it does, the excessive GH can cause excessive growth, traditionally referred to as pituitary gigantism.
Surgical removal is the usual treatment for GH-producing tumors. In some circumstances, focused radiation or a GH antagonist such as pegvisomant may be employed to shrink the tumor or block function. Other drugs like octreotide (somatostatin agonist) and bromocriptine (dopamine agonist) can be used to block GH secretion because both somatostatin and dopamine negatively inhibit GHRH-mediated GH release from the anterior pituitary.[citation needed]


Use of GH as a drug has been approved by the FDA for several indications. This means that the drug has acceptable safety in light of its benefits when used in the approved way. Like every drug, there are several side effects caused by GH, some common, some rare. Injection-site reaction is common. More rarely, patients can experience joint swelling, joint pain, carpal tunnel syndrome, and an increased risk of diabetes.[34] In some cases, the patient can produce an immune response against GH. GH may also be a risk factor for Hodgkin's lymphoma.[38]
 
I am monitoring all my blood levels as I am very familiar with the risks of GH. I am taking a very small dose at 3I.U's 5 days a week. Please find below a risk of the Remicade medication my GI doc wants to put me on and decide for yourself which is worse.

BTW, these were taken directly from the Remicade site.

What should I tell my doctor before I take REMICADE®?
You should let your doctor know if you have or ever had any of the following:
Tuberculosis (TB) or have been near someone who has TB. Your doctor will check you for TB with a skin test. If you have latent (inactive) TB, you will begin TB treatment before you start REMICADE®.
Lived in a region where certain fungal infections like histoplasmosis or coccidioidomycosis are common.
Infections that keep coming back, have diabetes or an immune system problem.
Any type of cancer or a risk factor for developing cancer, for example, chronic obstructive pulmonary disease (COPD) or had phototherapy for psoriasis.
Heart failure or any heart condition. Many people with heart failure should not take REMICADE®.
Hepatitis B virus (HBV) infection or think you may be a carrier of HBV. Your doctor will test you for HBV.
Nervous system disorders (like multiple sclerosis or Guillain-Barré syndrome).
Also tell your doctor about any medications you are taking, including vaccines or Kineret (anakinra), Orencia (abatacept) or Actemra (tocilizumab) and if you are pregnant, plan to become pregnant or are nursing. Adults and children should not receive a live vaccine while taking REMICADE®. If you have a baby and you were using REMICADE® during your pregnancy, tell your baby’s doctor about your REMICADE® use before the baby receives any vaccine.
What should I watch for and talk to my doctor about before or while taking REMICADE®?

The following serious (sometimes fatal) side effects have been reported in people taking REMICADE®.
You should tell your doctor right away if you have any of the signs listed below:
Infections (like TB, blood infections, pneumonia)—fever, tiredness, cough, flu, or warm, red or painful skin or any open sores. REMICADE® can make you more likely to get an infection or make any infection that you have worse.
Lymphoma, or any other cancers in adults and children.
Heart failure—new or worsening symptoms, such as shortness of breath, swelling of your ankles or feet, or sudden weight gain.
Reactivation of HBV—feeling unwell, poor appetite, tiredness, fever, skin rash and/or joint pain.
Liver injury—jaundice (yellow skin and eyes), dark brown urine, right-sided abdominal pain, fever, or severe tiredness.
Blood disorders—fever that doesn’t go away, bruising, bleeding or severe paleness.
Nervous system disorders—numbness, weakness, tingling, changes in your vision or seizures.
Allergic reactions during or after the infusion—hives, difficulty breathing, chest pain, high or low blood pressure, swelling of face and hands, and fever or chills.
Lupus-like syndrome—chest discomfort or pain that does not go away, shortness of breath, joint pain, rash on the cheeks or arms that gets worse in the sun. The more common side effects with REMICADE® are respiratory infections (that may include sinus infections and sore throat), headache, rash, coughing and stomach pain.
Psoriasis—new or worsening psoriasis such as red scaly patches or raised bumps on the skin that are filled with pus.
 
Problems caused when the body produces too much GH
The most common disease of GH excess is a pituitary tumor composed of somatotroph cells of the anterior pituitary. These somatotroph adenomas are benign and grow slowly, gradually producing more and more GH. For years, the principal clinical problems are those of GH excess. Eventually, the adenoma may become large enough to cause headaches, impair vision by pressure on the optic nerves, or cause deficiency of other pituitary hormones by displacement.
Prolonged GH excess thickens the bones of the jaw, fingers and toes. Resulting heaviness of the jaw and increased size of digits is referred to as acromegaly. Accompanying problems can include sweating, pressure on nerves (e.g., carpal tunnel syndrome), muscle weakness, excess sex hormone-binding globulin (SHBG), insulin resistance or even a rare form of type 2 diabetes, and reduced sexual function.
GH-secreting tumors are typically recognized in the fifth decade of life. It is extremely rare for such a tumor to occur in childhood, but, when it does, the excessive GH can cause excessive growth, traditionally referred to as pituitary gigantism.
Surgical removal is the usual treatment for GH-producing tumors. In some circumstances, focused radiation or a GH antagonist such as pegvisomant may be employed to shrink the tumor or block function. Other drugs like octreotide (somatostatin agonist) and bromocriptine (dopamine agonist) can be used to block GH secretion because both somatostatin and dopamine negatively inhibit GHRH-mediated GH release from the anterior pituitary.[citation needed]


Use of GH as a drug has been approved by the FDA for several indications. This means that the drug has acceptable safety in light of its benefits when used in the approved way. Like every drug, there are several side effects caused by GH, some common, some rare. Injection-site reaction is common. More rarely, patients can experience joint swelling, joint pain, carpal tunnel syndrome, and an increased risk of diabetes.[34] In some cases, the patient can produce an immune response against GH. GH may also be a risk factor for Hodgkin's lymphoma.[38]
Yes most of those were reported on much higher doses. There are also many tell tale signs to look for, long before you get problems. For instance it mentions enlargement of the forehead and hands and feet (almost never happens, as dosing is almost never this high, except when abused by body uilders (10 -15 iu's/day)). Well this happens when someone is taking too much gh as you see in the reference amount. They start getting a tingling feeling in their hands. That is the sign to say they should come down a little on the dose. However in all gh is relatively safe (in recommended smaller dosing), and ESPECIALLY compared to the drugs we are offered nowadays....does any of them NOT have an increased cancer risk?

So far out of 5 people I know, there has not been 1 side effect or one person who decided to come off because of such. Just saying -be more scared of that remicade and 6mp that most of us find ourselves on
 
Top