Crohns medications

[hawaiianlily]

I hate Asacol and I find it does nothing but cause joint pain especially in my fingers to the point that I can't pick up a glass.  I have never felt any benefit from it and I know there are alternative meds out there, but my doctor refuses to give me anything else.  My crohns is in the rectum and large intestine.  I have a pain in my lower left side and a lot in my rectum especially after a BM which my doctor says is from scar tissue and nothing can be done about that either but opt for a colostomy bag.  

[lizziecee]

Hi Tonya, Good to see your interesting post. When  I was dx in 1970, my gastro said that some people with Crohn's only get one or two flares, and the disease "burns itself out". Guess he was trying to give me "hope for the future". I am pleased your daughter is in remission without drugs, as the drugs themselves can cause serious side effects, but for those of us with intractable Crohn's, severe rectal haemorrhages requiring blood transfusions, IV steroids etc. an immuno-suppressant seems to be the only way to keep the disease in remission.

Hope your daughter continues to do well and thrive.

Lily - pleased to be of help - when I was dx in 1970 there was no internet, and indeed no books in the library for me to research. I was floundering.  Doctors in those days didn't believe in explaining much to the patient, but thankfully, the new generation of doctors have a very different attitude. My current gastro is on his first consultancy appontment and blinds me with science at times, but at least he takes the time explain what is happening to my body, and the latest trials and research. He is my idol.

Methotrexate, as you say, is licensed by the FDA for the treatment of some diseases, as it is here in England by NICE, our governing body of medications and treatment. This does not stop consultants prescribing it "off licence" for Crohn's. It is a cytotoxic chemo drug and needs constant vigilance with monthly blood tests. I believe when I first started it I had weekly blood tests for 3 months, then fortnightly, and now only monthly. It can be particularly toxic to the liver and this is why the blood tests are necessary. I have 2 parameters "out of range", MCV and MCH, something to do with enlarged red cells from the bone marrow, but my gastro and GP (where the blood tests are normally done) are aware and feel they are not elevated enough to stop the drug. Pleased to read you have a new gastro, who is youngish so should be up to date with current meds. I have never had a resection in the 38 yrs of Crohn's, as even initially, my gastro said I should steer clear of surgeons as the shorter the length of the intestines, the worse the diarrhea. However, I now have two strictures in my small intestine, where the disease started, and may need resection if the narrowing gets worse and a blockage occurs. We'll see - I have no symptoms at present, so my gastro is holding off on surgery at present.
Good luck with the new gastro  - please let me know how you get on and what advice/treatment she has for you?

Take care both,
Liz.

[tonya3]

My daughter, 13, can not take any medications by mouth.  Asacol, pentasa, 6mp, etc, they all give her pancreatitis.. So I did alot of studying and she has stopped all her bleeding, rectal pain,  urgency to go to the bathroom all the time, diarrhea.  Its all stopped!!  She has been sick for 4 years and now she is on nothing except  fish oil , probiotics, calicium,  vitamin, and the most important  l- glutamine.

[hawaiianlily]

Lizzie,  I can't thank you enough for your response.  I have always had a gut feeling that there had to be drugs out on the market that should be considered before surgery which should be the absolute last option.  You make me feel sane.  I checked the drug you mentioned and it is approved by the FDA here, but I did not find the drug being used for crohns.  However, it seems that the same drugs that are being used for arthritis are also the same drugs being used for crohns.  I had my doctor find me another Gastro Dr. and its a female and her credentials are excellent and she has only been in practice nine years.  Perfect, I think, since I find the older doctors so unwilling to try out new options.  I am also shocked about the scar tissue and so relieved that this may not be the problem.  You have given me so much hope.  Again--thank you for being here for people like me.
Gratefully Yours,
Lily

[lizziecee]

Hi Lily - sorry for the late response - I have been away for a week. Can you not find another doctor, especially a gastro who has experience of treating Crohn's?  Asacol is really a very old drug and there are so many newer alternatives on the market now that could help you. I have had Crohn's for 38 years and have never heard of "pain in the rectum and lower left side" being caused by scar tissue. If this was the case I would be in constant agony with all the flares and severe rectal haemorrhages I have had in the past.

I have found I am my own best advocate, and indeed had to fight with a previous gastro to get methotrexate, as it is not licensed in England for Crohn's (only breast cancer,psoriasis and rheumatoid arthritis), but is available off label when prescribed by a hospital consultant.  Luckily in the UK we have free health care, so cost is not a problem. I have had the best 7 years of my life , since having a weekly injection of methotrexate, which I do at home.

It sounds as if your Crohn's is "active" with the pain you are suffering, and a colostomy bag will not necessarily fix the problem and perhaps make it worse. Please try and see another gastro - that is if you are currently being treated by one. If just a GP or PCP, ask for a referral to a specialist......please!

Take care,
Liz.