I am writing this because for some reason, I have to have at least 1 post to access certain Subforums on here (weird!). I was diagnosed earlier this year with IBD- indeterminate colitis after bloodwork and a colonoscopy(including biopsy). Put on Prednisone immediately and my GI wanted me on 6MP, which I refuse to do at this point. Well, I don't know, now I am on Prednisone still (since April of last year with 1 month break). I started Pentasa last week. Feel very frustrated and overwhelmed by information (or lack of) re: these diseases. I am set to see a new Naturopath (one experienced with IBD) next week and I am all for trying diet and alternative treatment options.
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Angrybird
Moderator
Hello and welcome to the forum 
How are things at the moment tummy wise? What dosage of the Pentesa and Prednisone are you on? What put you off the 6-mp? Are you following any type of diet at the moment?
AB
xx
How are things at the moment tummy wise? What dosage of the Pentesa and Prednisone are you on? What put you off the 6-mp? Are you following any type of diet at the moment?
AB
xx
David
Co-Founder
Hi there and welcome to the community. Out of curiosity, what are your specific symptoms and is the GI doing anything to get a more solid diagnosis rather than leaving it as Indeterminate Colitis?
Hi there,
I also have been diagonised with indeterminate colitis and know it can be fustrating when you don't fall cleanly into any one group (i.e UC or Crohns). Firstly I started as IBD of the "ulcerative colitis type" and now they think it is Crohns. I was recently put on azathioprine which I hear is similar to 6MP and have found it very effective. It has helped me to get off the pred and keep the symptoms (D/bleeding) at bay. I hope things go well with the naturopath next week. Have you seen a dietician yet? Its always helpful to know what foods can cause discomfort as well.
I also have been diagonised with indeterminate colitis and know it can be fustrating when you don't fall cleanly into any one group (i.e UC or Crohns). Firstly I started as IBD of the "ulcerative colitis type" and now they think it is Crohns. I was recently put on azathioprine which I hear is similar to 6MP and have found it very effective. It has helped me to get off the pred and keep the symptoms (D/bleeding) at bay. I hope things go well with the naturopath next week. Have you seen a dietician yet? Its always helpful to know what foods can cause discomfort as well.
Hello Angrybird,
Things are decent right now tummywise, I am currently on 20 mg prednisone daily and 4 g Pentasa (for just about a week now). Well as far as the 6mp, my mom has MS and materal Grandma autoimmune hepatitis. Both have taken immunomodulators and have suffered from some scary side effects. I am also feeling like drugs (antibiotics, heavy NSAID use) very likely contributed to my disease and I find them very scary and unnatural. I have been following a gluten-free diet for about 6 months now. Congratulations on being pregnant (I find it comforting-I don't have children yet...), is it your first?
Thanks for your support,
B
Things are decent right now tummywise, I am currently on 20 mg prednisone daily and 4 g Pentasa (for just about a week now). Well as far as the 6mp, my mom has MS and materal Grandma autoimmune hepatitis. Both have taken immunomodulators and have suffered from some scary side effects. I am also feeling like drugs (antibiotics, heavy NSAID use) very likely contributed to my disease and I find them very scary and unnatural. I have been following a gluten-free diet for about 6 months now. Congratulations on being pregnant (I find it comforting-I don't have children yet...), is it your first?
Thanks for your support,
B
Hi David,
I am pretty symptom free right now, I think... Prior to my first major "flare" (April 2012), I had what I'll call loose stools (not D) for about 3-4 years. I had one week long episode of D in 2010 I think, went to an urgent care clinic (I was uninsured) and was told I probably had IBS and to follow up with a GI. I did not (uninsured).
In April of 2012 I had really bad D 10+ times per day, severe fatigue, severe cramping pain, lack of desire to eat, and my eyes were swollen shut. I went to an eye doctor and was told my eyes seemed okay, it was probably a blocked duct or something. She prescribed an antibiotic but suggested I try hot water compresses first, which worked (or the inflammation went away on its own?) This flare lasted about 5-7 days maybe. I did go to the ER as I was concerned. I was basically given hyosciamine sulfate (spelling?) and a referral to a GI.
By the time I got into the GI, I had returned to my normal (loose stools-no pain). I now regret having ever taken prednisone as I seem unable to get off of it without experiencing symptoms (pain, increased frequency, D). Lately I have been having some knee pain which my GI did not seem to think it was related to anything?
My GI does not seem to think it matters much if I have UC or Crohn's. He explaned to me that at this point he would treat me the same for either I guess...
I have read many of your posts, and found some comfort in them-thanks for your support David.
B
B
I am pretty symptom free right now, I think... Prior to my first major "flare" (April 2012), I had what I'll call loose stools (not D) for about 3-4 years. I had one week long episode of D in 2010 I think, went to an urgent care clinic (I was uninsured) and was told I probably had IBS and to follow up with a GI. I did not (uninsured).
In April of 2012 I had really bad D 10+ times per day, severe fatigue, severe cramping pain, lack of desire to eat, and my eyes were swollen shut. I went to an eye doctor and was told my eyes seemed okay, it was probably a blocked duct or something. She prescribed an antibiotic but suggested I try hot water compresses first, which worked (or the inflammation went away on its own?) This flare lasted about 5-7 days maybe. I did go to the ER as I was concerned. I was basically given hyosciamine sulfate (spelling?) and a referral to a GI.
By the time I got into the GI, I had returned to my normal (loose stools-no pain). I now regret having ever taken prednisone as I seem unable to get off of it without experiencing symptoms (pain, increased frequency, D). Lately I have been having some knee pain which my GI did not seem to think it was related to anything?
My GI does not seem to think it matters much if I have UC or Crohn's. He explaned to me that at this point he would treat me the same for either I guess...
I have read many of your posts, and found some comfort in them-thanks for your support David.
B
B
Hi Abic,
I have not seen a dietician, but I did see a naturopath who wanted me to go gluten and dairy free. I did both for aout 4 months and now I eat some dairy when I want to. I think the naturopath I am going to see will probably recommend the SCD diet and I am trying to get prepared for that. I really thought that the biopsy was going to give a definitve answer, but I guess it did not. It seems like there is more blood with UC right? I do not have blood (very minimal once, maybe... ) so I think Crohn's or something else...? Either way, it stinks! I'm glad you are doing well and thanks for your reply.
B
I have not seen a dietician, but I did see a naturopath who wanted me to go gluten and dairy free. I did both for aout 4 months and now I eat some dairy when I want to. I think the naturopath I am going to see will probably recommend the SCD diet and I am trying to get prepared for that. I really thought that the biopsy was going to give a definitve answer, but I guess it did not. It seems like there is more blood with UC right? I do not have blood (very minimal once, maybe...
) so I think Crohn's or something else...? Either way, it stinks! I'm glad you are doing well and thanks for your reply.B
Hi Again,
Yes- can understand with the diet. It can be pretty restrictive and we are all so different. My GI told me that yes, UC does tend to have blood- however if you also have Crohns in your colon (Crohns colitis) you often bleed as well. Like you my biospies did not indicate which one it was! And I have symptoms of both- i.e fresh /dark red and sometimes even black blood! So we are in the 10% that have a diagnosis of 'one or the other!' What are your main symptoms?
Yes- can understand with the diet. It can be pretty restrictive and we are all so different. My GI told me that yes, UC does tend to have blood- however if you also have Crohns in your colon (Crohns colitis) you often bleed as well. Like you my biospies did not indicate which one it was! And I have symptoms of both- i.e fresh /dark red and sometimes even black blood! So we are in the 10% that have a diagnosis of 'one or the other!' What are your main symptoms?
Just read you post to David. I had the same experience with prednisone. However, my GI put me on AZA which helped stop the relaspe so I could get off the prednisone. My doc was also not that concerned about whether it was UC or Crohns because he said he would treat me in the same way despite which IBD I had. I guess over time they will be able to differentiate between the two when it is more established.
Angrybird
Moderator
Ahh I see, hopefully the Pentesa combined with diet can get you off the Pred. If not then don't completely rule out the 6-mp (or other meds), I am on this and have been for about 10 months now and have had no issues. This is my first baby and I have been doing very well, I think it helped that my tummy was fully settled before I fell pregnant.
